Living not drowning

Development

2011-10-15T12:55:00.000-07:00

Edith has reached nine months and every day we tick off another milestone. We watch her like a hawk, looking for signs that she is developing "normally" or crucially, signs that refute autistic development. We often video or photograph moments which we think are key. So tonight she sat on the bed, giggling at Bea's Tiny Tears doll and I said "kiss baby". She grinned, leant forward, have TT a big slobbery kiss and, critically, turned to her daddy and smiled. That one subtle, natural, usually unnoticed step in development, a missing part of the autistic jigsaw, is so clearly in place. Joint attention. I've never met a baby who shares their experiences so readily. We know James developed this skill, though I'm not sure it was quite this early and certainly never at this intensity, and we have video footage of him reference pointing, cheerfully checking we had seen what he had. Joint attention is so critical in "normal" development yet it is rarely asked about at this young an age. The CHAT test, which has been validated above 18 months, screens for children at risk of developing autism and joint attention, or rather lack of it, is a major red flag. But at 9 months it's not mentioned in the various developmental checks. Simon Baron-Cohen believes you can tell in the first tear of life whether a child is autistic and I was once sceptical. Now I wonder....

All change

2011-09-01T16:06:00.000-07:00

It's been a year of change, with the arrival of Edith, Bea starting school and finally employing a permanent after school carer for James. And as the long summer holiday draws to a close we face yet more changes. Change is hard for people on the autistic spectrum. Characteristically, they find it hard to deal with and disruption to their routine throws the whole world into chaos, making it hard for them to predict what's coming next. We've always felt that James isn't actually that affected by changes, he doesn't seem thrown when we get a reavemwnt cater to cover leave or if I serve supper later or earlier than usual. Overall he's quite passive and seems to cope with these sort of changes quite well, at least on the surface. I'm not so sure how well he's going to cope with the changes coming up at school though. He's been in the same classroom for 3 years mow and a couple of his classmates have remained the same throughout too. But this year he's changing classrooms, entering a class with completely different children and has new teachers and teaching assistants.... I hooe he (and they) copes....

Dipping my toe back in...

2011-08-28T15:58:00.000-07:00

Hmmm. The water's still warm! Might have to come in more often....

It's been a long time since I last added to these pages and so much has happened. It would take too long to post a full update but the major change for all of us has been the arrival of baby Edith Agatha in January this year. Needless to say, life has been hectic since then but I feel I'm coming out of the fog now and beginning to feel vaguely in control once again.

A major cause for anxiety had been around James' response to another new sibling - the last time we brought a baby home he spiralled into a frightening and profound regression and "declared" his autism. So it was with trepidation that I crossed the threshold for the first time with Edith in my arms. I am very relieved to say he has taken her in his stride. Well, he covers his ears and gets distressed when she screams but quite frankly I often feel the same way! In many ways nothing has changed for him. We still provide him with one to one care and life revolves around him and his needs. It has been Bea who has made all the sacrifices and bourne the brunt of any hardship. Overnight she went from only child to middle child with none of the positives and all of the negatives. Luckily, if there's one thing that James has taught her it is resilience and she has coped very well with all the changes (although she breaks my heart when she turns to me and says "Daddy looks after James, you look after Edith, but who looks after me?....)

Escape..........

2009-12-19T08:04:00.000-08:00

After a lot of deliberating, I decided to stick with my arrangement to come up to Edinburgh and visit my parents with Bea. My husband had arranged to take time off work to cover for James and I had organised resptite for the weekend so things seemed stable at home. My emotional state is still all over the place, as to be expected, but the thought of escaping and being able to not have to think about cooking, cleaning, sorting out school bags, collecting children from various activities was rather tempting. There is also the fact that I am guaranteed more sleep than at home as we get up very early to get James ready for school.

My anxiety levels were quite high for the trip up, in part because Bea had been unwell the day before and I wasn't even sure that we'd make it. In the end she was a dream on the train, apart from the incident when she threw up everywhere..... I nearly held myself together, and quick change of clothes seemed to sort it all out. I don't know why my children don't travel well - I have a LOT of stories about journeys that have been affected by ill children, but will save those for another time.

So I have escaped from a lot of the daily stress. What I can't escape from is my internal stress. I have always been a ruminator, and it has escalated back to levels that remind me of the time not long after James began to regress. That has made my grief harder to control, as I feel like I'm reliving all the grief I went through when I "lost" James. Because that's what James' autism feels like to me, a loss. I see the face of the boy I gave birth to, and love with all my heart, but I find myself wondering where the interactive, lively, loving, giving, entertaining little boy of two went? He just disappeared into a frightening, overwhelming world of autism. And I grieved then and I am grieving again now, this time for two children. And our future. And all my plans and hopes. I will find the strength to get through this and find another path, but right now I wish I could escape from my runaway brain.

What a difference a week makes...

2009-12-16T01:07:00.000-08:00

This time last week I was parking my car.
This time last week I was happy and excited.
This time last week I was waiting to see my baby for the first time.
This time last week I told my daughter we were going to see her new baby brother or sister.
This time last week my future was bright, full of hope and promises.
This time last week I felt lucky.
This time last week I had never felt this sort of pain.
This time last week I didn't know....

This time this week I feel more alone than I ever have.
This time this week I can't imagine tomorrow, let alone my future.
This time this week I wish the outcome had been different.
This time this week I am broken, in agony and scared I'll never lift myself out of this gaping hole.
This time this week I feel so guilty for watching Bea watching me go through this.
This time this week I am holding my ill daughter, mourning for my dead baby and it just doesn't seem fair.
This time this week I am counting down the minutes to the moment when I saw the scan and knew what I was facing.
This time this week I feel the loss more acutely than this time last week.

It's over....

2009-12-14T14:11:00.000-08:00

Today was the longest day of my life, and I can only hope that I never go through this again. I'm exhausted, emotionally and physically and feel as though all my stuffing has been knocked out. Perhaps the most difficult part was the number of small but significant difficult moments that came up through the day.

This post may contain some slightly difficult issues, so if you are feeling sensitive I'd suggest you read it when you're feeling stronger. I certainly don't want to upset anyone.

I arrived at the hospital at 830 this morning, starved from midnight as advised. I knew that it was very unlikely that I would be in theatre before 1230 as they had warned me that I would be on the emergency list. Being a Monday, I knew there would have been lots of other emergencies over the weekend, so I was sort of prepare for a wait, but I was needed at home for the evening, so I could help with James. We're having some difficult evenings at the moment (last night was a classic - having been sat on the toilet on and off for 5 minutes, he did a massive poo in the bath so we needed one of us to shower the children, the other to deal with the rather unpleasant bath....), so I couldn't leave David home alone with both children. Plus, I wouldn't have been able to get home from the hospital without him.

I had explained this last week, and begged them to make sure I was on the list as early in the day as possible. Sadly, this didn't happen. The night SHO had failed to put me on the list early enough and when the day team came and told me I was ver upset. I begged them to get me on the list earlier, explaining that I would have to self discharge if it got to 6pm. I find it really upsetting that I have lost my baby, have chosen to attend for an operation, yet cannot be added to an elective gynae operating list. If I was having a termination, it would have been a completely different story, with me being far more in control and more likely to get a slot that suited me. It's really not fair and I will be bringing this up when I write a carefully worded letter to PALS.

When the SHO was doing the consent form, I asked whether the products could be sent for genetic analysis. Explaining that we already had a severely disabled child, and that knowing that there was (or wasn't) a genetic explanation would help us gain some closure. Apparently it isn't protocol until you've had three miscarriages, due to NHS funding issues. I know James' problems don't have a specific genetic explanation (although there is strong evidence that there is a genetic component in autism), but if we knew that there was a chromosomal problem with this baby that might have a recurrence risk then we can start making decisions about whether we would continue trying to extend our family or not. The thought that I may never hold another baby in my arms fills me with sadness and sorrow, but I know we would never be able to handle another severely disabled child with James' needs. I couldn't provide the sort of home I would want to provide for any of my children if we brought another disabled child into the world. Of course, I am aware that there may be no answers from these tests. I am also very aware that tests will not rule out autism, and that we could proceed with a pregnancy and be facing rearing another autistic child. None of this is easy to deal with, and I guess I'm quite raw at the moment and will be guided by how I feel a few weeks down the line. We discussed many of these issues before trying for a baby, and whilst in the first weeks of this pregnancy, so I know we'll make the right decision for us.

Eventually, the registrar agreed to write the form, but asked me to take it to the genetics department myself and talk to someone there to try and persuade them to do the test "off protocol". I was aghast, and it was the hardest conversation I had all day but I must have found a symmpathetic laboratory assistant as she took my request form to the powers that be and they agreed without a fuss. But there was more to come - when it looked as though I would not be going down to theatre until very close to the cut off time to get the sample to the lab, they suggested I took the sample up there myself! Or alternatively get my husband to do it.... I'm sorry, but I found that totally inappropriate, I would have just about come round from the anaesthetic and was expected to toddle down the corridor to the genetics centre holding a jar that contained my dead baby. I lost it at that point and told them that the porters would just have to do the job they were paid to do.

Finall, at 230, they let me know that I was going down to theatre. I started getting dressed and then removed my jewellery etc. I asked where I could store them and was told just to leave them by the bed. I was shocked, especially when I was told that they had never had anything go missing. There was no way I was going to take that risk - I have had £4000 worth of jewellery go missing from hospital grounds so once bitten, twice shy. I demanded somewhere locked for my valuables and was told there was nowhere. I lost it, screaming and shouting at the poor healthcare assistant, refusing to go to theatre until somewhere was located. Eventually everything was easily sorted, but not until I had had to get beside myself with frustration. Yet another thing I'll be mentioning to PALS...

On my way to theatre, I became more and more emotionally distressed, experiencing the most profound, deepest, most intest, all consuming, visceral pain I have ever experienced. The theatre staff were so kind, compassionate, understanding and allowed me to wail, my cries were almost not human. The anaesthetic was administered quickly and easily and I woke in recovery feeling warm, safe and knowing it was over. I'm still in pain, both physically and emotionally, but knowing my baby is no longer inside me is somehow a relief. It's going to take a long time to heal from this profound experience, but it can only make me stronger.

Empty

2009-12-13T09:42:00.000-08:00

I know all about the grief cycle - we studied it thoroughly enough during our psychology and psychiatry training at medical school and I have supported various families through their losses, both in the neontatal period and with older children. So here I am, in the midst of my own experience and all I feel is empty. Perhaps because at the moment I don't feel there's any closure, I almost feel distant from the whole experience. If I hadn't been for my scan on Wednesday I would still be pregnant (in my head, at least). I would be planning my future with my new baby, and thinking about all the logistics of adding to our family. Instead I'm in limbo, neither pregnant nor actually NOT pregnant. I'm hoping that my operation tomorrow will mean I can start facing my future again. Planning a very different future, but still a future.

I'm staying strong at the moment for the family. James has no idea what is going on and is going through a rather challenging time at the moment. His current favoured activity in the car is to undo his seatbelt and wind down the window, throwing himself out, Dukes of Hazzard style. I'm hoping a friend is going to be able to lend me her spare five point harness car seat suitable up to age 8, as it's getting quite dangerous now.... He's very hyper at the moment too, and perhaps that's because I don't really feel up to spending time with him. I feel so guilty about that and David is managing the brunt of his difficult behaviour but I need to look after myself at the moment.

The weekend has actually been easier than I expected. I had a stall at Duck Pond Market selling my crafty bits and bobs. I've been going there since April, and this was my most successful weekend. The scarves went down very well and my hand dyed yarn is proving very popular. I'm guessing I'll be back to dyeing over the Christmas break, to restock. I had avoided dyeing whilst pregnant as there is a risk of respiratory difficulties with inhaling the dye powders. So now I can do as I please! The other crafters at the market are amazing people - I have shared my difficult news with them and they've all been so supportive this weekend. I wouldn't have got through the weekend without them. I also indulged in some therapeutic spending, which was lovely.

Think of me tomorrow, my friends. I will be waiting and knitting a therapeutic project to keep my mind occupied. I'm sure there will be a lot of tears and heartache, but it will be the beginning of a new phase, the start of a clean slate, and some sort of closure.

Falling apart

2009-12-11T22:29:00.001-08:00

I'm sorry to come and share such terrible news, but feel it will be cathartic to get it out.

In my last post I mentioned that things her had gone from mad chaos to madder chaos! Part of that was driven by the lovely news in October that we were expecting our third, and much wanted, baby. Ironically, I had just increased my working hours to two days a week, with the intention of taking on a third day in the New Year. Life was about to get complicated again. We talked and worried about the future - what if James regressed again when the new baby arrived, how would I cope with three children, what would the summer holidays be like, juggling a new baby and James (as well as Bea), how would Bea cope - she's already playing second fiddle to James and a new baby would possibly sideline her even more. And we made plans for the future, where the baby would sleep, what new car we would buy, sorting out all the clothes that I've hoarded in the loft, planning names, excitement at the prospect of a summer not working and looking after my lovely children. The future looked bright and exciting, as well as challenging.

Three days ago our world fell apart. I was 12 to 13 weeks pregnant (my dates are a little uncertain and whilst I had pushed for an earlier scan it never happened) and went to my nuchal fold scan. We had agreed that if the nuchal fold was suggestive of any abnormalities I would go forward for further testing. We never anticipated what happened when I entered the room. I took Bea along, and will probably regret that for the rest of my life. I wish I hadn't allowed her to experience what was the most painful morning of my entire life.

There were two sonographers in the room, the trainee and her supervisor. The trainee started the scan and David and I were beaming with excitement. We were about to meet our new baby. At first all she could find was my (very full!) bladder, then there was a gestational sac. There was something inside it, but I wasn't convinced it was quite what we should be seeing at this stage. The supervising sonographer took over and as soon as she put the probe back on my abdomen I knew what we were facing. She asked me if I had experienced any pain or bleeding and I felt like saying "not until you asked me, and now I am breaking in two". She asked me to empty my bladder so I could have an internal, and I went to the loo all composed and serene as if it was happening to someone else. I'm still not sure if David understood at this point or not. The internal showed the sac and a collection of cells but no heartbeat. I told her I could see there wasn't a heartbeat and I knew what had happened. I needed to know when my baby had stopped growing and she said around 9 or 10 weeks. I got dressed and was taken to a side room, where I shed a few tears and then composed myself for Bea's sake.

The next hour was the most horrific of my life. We went up to the Gynaecology ward, and waited, and waited, and waited. There were no tissues, there were posters about Chlamydia screening, there were other women in there laughing and cuddling their partners (I now know most of them were waiting for early scans because of bleeding or pain) and I just wanted to die. I felt as though my life had come to an end, that it would never be the same again. I just wanted to close the book, and reopen it at a new and happier ending. I wanted them to be wrong and to still have my baby inside me. I finally saw a nurse and she suggested I should just let things happen naturally. Or I could take some drugs that would induce a miscarriage. But I want the possiblity of some answers, and have pushed to have an operation as that way histology can be performed. If I can find out that there was some sort of reason for this to happen I will feel more at ease. Perhaps it was a genetic defect or an infection that meant the baby couldn't survive. Then I can stop torturing myself with all the questions I'm currently asking myself.

Think of me on Monday, when I will be spending most of the day at the hospital. I don't know how it will go but I will come back and share with you as soon as I feel able.

So, what have I been up to?

2009-11-15T08:59:00.001-08:00

8 months is a long time, so perhaps you feel you'd like to know a bit more about what I've been up to. It's a long story, so I hope you've got a cup of tea and are sitting somewhere comfy!

The bottom line is that life has gone from mad chaos to, well, madder chaos! The only thing that could make our lives more hectic would be if we got a dog - luckily neither myself or my husband are dog lovers!

James managed to get through most of the last term of school uneventfully. All the winter bugs and viruses had worked their way through his system so he managed to get through a whole term without missing a day. This was a major acheivement - the first two terms, he was missing at least one day alternate weeks! I was called into school on numerous occasions which started to get embarrassing! If a qualified doctor can't decide whether he child is well enough for school, what does she do with patients?!

In May we had booked a week at The Thomas Centre - the descriptions and ethos made it sound like an ideal venue for a holiday for families like ours. It is impossible to explain how much organisation is required when going away with a child like James. He needs his routines and can't be allowed to roam freely around the house/grounds unlike other children his age. He gets bored and distracted easily so needs to have activities available to him but if he doesn't enjoy them we need to be able to leave quickly and diffuse the situation. So a holiday "village" set up specifically for families with autistic children sounds ideal doesn't it? We phoned ahead and made sure there would be stair gates (to keep him out of the kitchen) and with plenty of preparation felt we were leaving with all we'd need. But things didn't go according to plan. The first hurdle was that a week before we were due to go, I fell down the stairs at the train station and fractured my coccyx. Ouch. There is no treatment, other than rest and painkillers, so I was in agony and could barely bend for the week before we left. I wasn't relishing the idea of a five hour drive with a sore lower back, and my expectations weren't dashed! Not only was I in agony, but James found the journey very difficult and spent the majority of the time throwing things out of the car window (thankfully, not himself or his clothes!). We are now considering buying a new car with electric windows at the back!

The complex itself was lovely - there was a small childrens play area in front of the cottage, a large trampoline in the grounds, a heated swimming pool which you booked out for the family so had total privacy, a games shed with ten pin bowling and a pool table, and a play room with a piano and children's toys. Perhaps my biggest disappointment was the fact that whilst luxurious and comfortable the actual cottage wasn't geared up to a very active autistic child. We spent the first few hours "de-Jamesing" the place, putting things out of reach, moving lamps and breakables into other rooms and generally worrying about how much damage he'd do. I was surprised that this hadn't been considered when designing the place, to be honest.

The week had a lot of ups and downs. Actually, an awful lot of downs for me, but that was as much to do with my levels of pain as anything else. There were surprises - for instance James HATED his trip to the Aquarium in Hull and was indifferent to the animals at Rushmoor Park but loved the outdoor play there. He surprised us several times by sitting down (outside) and eating his lunch without moving. A huge achievement for him, and us. By far the most successful day was our trip to Pleasure Island. James has always been a thrill seeker (as a four month old baby, a good way of calming him down was to turn him upside down - I guess he had a lot of proprioceptive and sensory needs even then). He spent the whole day grinning and cuddling us and Bea loved it too. Whenever we go away we always make sure there is a similar facility around for us to access.

Luckily our journey home was a lot less stressful and my pain had subsided a bit by then. We haven't decided whether we would go back and perhaps will wait until James is a bit calmer to try again. What has become clear is that we are unlikely to take any more holidays for quite some time, as it was more exhausting and stressful than staying at home. One option would be to take a carer with us, and we will definitely be considering that for any future family breaks.

So that's part of my update, and I'll add more soon!

Long time, no post

2009-11-03T06:44:00.001-08:00

I have just noticed that my last post was back in March! I can't believe it's been so long. Time just flies. We had a rather hectic summer and the first half term break has been and gone, and now we have the run up to my least favourite time of year. Christmas is full of pain for me - James' birthday is 3 weeks beforehand, and it feels like rubbing salt in the wound. All around me people are getting excited about present buying, the children are getting feverish with anticipation and the joys of the festive season abound. I am usually drowning in a sea of dark depression, facing the thought of four days stuck at home with very little to do and a child who has no idea what Christmas is about, let alone what to do with the (few) presents he gets. And I have no idea what to get him either. Can you imagine how hard that is, having a child for whom you cannot find a suitable gift? I suppose I could buy him some new clothes (he is back to chewing through t shirts at a rate of one a day...) but that doesn't really count does it? Or maybe some new shoes - we have such a hard time getting his shoes fitted that they now cost me over £50! He has no interest in the TV, so a DVD is out of the question, and he can't ride a bike or scooter so that's not an option either. It is one of the many things that makes me feel an inadequate parent.

But I'm not going to continue in this negative frame of mind. I stumbled across this little gem on someone elses blog and thought it might cheer me up to fill it in and share.

All about me:
Things you've already done: bold
Things you want to do: italicize
Things you haven't done and don't want to - leave in plain font

1. started your own blog
2. slept under the stars
3. played in a band
4. visited Hawaii
5. watched a meteor shower
6. given more to charity than you could afford
7. been to disneyland/world
8. climbed a mountain
9. held a praying mantis
10. sang a solo
11.bungee jumped
12. visited paris
13. watched a lightning storm at sea –
14. taught yourself an art from scratch
15. adopted a child
16. had food poisoning
17. walked to the top of the Statue of Liberty
18. grown your own vegetables-
19. seen the mona lisa in france
20. slept on an overnight train
21. had a pillow fight
22. hitch hiked
23. taken a sick day when you’re not ill
24. built a snow fort
25. held a lamb - and bottle fed it
26. gone skinny dipping
27. run a marathon
28. ridden a gondola in venice
29. seen a total eclipse –
30. watched a sunrise or sunset –
31. hit a home run
32. been on a cruise
33. seen niagara falls in person
34.visited the birthplace of my ancestors
35. seen an Amish community
36. taught yourself a new language
37. had enough money to be truly satisfied
38. seen the leaning tower of pisa in person –
39. gone rock climbing
40. seen Michael Angelo's David in real life
41. sung karaoke
42. seen old faithful geyser erupt
43. bought a stranger a meal in a restaurant
44. visited Africa
45. walked on a beach by moonlight –
46. been transported in an ambulance
47. had your portrait painted
48. gone deep sea fishing
49. seen the cistene chapel in person
50. been to the top of the Eiffel Tower in Paris
51. gone scuba diving or snorkelling
52. kissed in the rain
53. played in the mud
54. gone to a drive-in theatre
55. been in a movie
56. visited the great wall of china
57. started a business
58. taken a martial arts class
59. visited Russia
60. served at a soup kitchen
61. sold girl guide cookies
62. gone whale watching
63. gotten flowers for no reason
64. donated blood
65. gone sky-diving
66. visited a nazi concentration camp
67. bounced a cheque
68. flown in a helicopter
69. saved a favorite childhood toy –
70. visited the Lincoln Memorial
71. eaten caviar
72. pieced a quilt
73. stood in times square
74. toured the everglades
75. been fired from a job
76. seen the changing of the guard in london
77. broken a bone
78. been on a speeding motorcycle
79. seen the grand canyon in person
80. published a book
81. visited the vatican
82. bought a brand new car –
83. walked in Jerusalem
84. had your picture in the newspaper
85. read the entire bible
86.visited the White House
87. killed and prepared an animal for eating
88. had chickenpox
89. saved someone’s life
90. sat on a jury
91. met someone famous
92. joined a bookclub
93. lost a loved one
94. had a baby
95. seen the Alamo in person
96. swum in the great salt lake.
97. been involved in a law suit
98. owned a cell phone
99. been stung by a bee

What does your list look like?

Two for the price of one

2009-03-25T11:59:00.001-07:00

Yes, you've guessed it, I have not one but two poxy children. Fun and games all round here. I guess we've been rather lucky that neither of them have been particularly unwell with it, no prodromal fever or coryza and not too many spots. But I feel like I'm stuck here, and am getting cabin fever. There have been a few bonuses - as James isn't being picked up at 740am we're getting a lie in (although Bea joined us at 6am this morning, putting a dampner on that plan!) and he's more tired than usual so is sleeping until 9ish. He's also less "busy" than usual and far more amenable to instruction and requests.

I read a very small newspiece in the British Medical Journal a few months ago. It related to a finding that children with autism appeared less autistic when they had a fever. I suppose that the background assumption might be that as they have areas of the brain that function in a different way to typically developing children, their brain's response to a temperture may be different too. I must dig out the reference and read it properly. When I first saw this, it made me think about James. He is certainly less autistic when he's ill, but he doesn't need to have a temperature. He is quieter, less frenetic and more predictable. He moves a bit more slowly and is easier to engage. He allows himself to be hugged and reciprocates more than when he's well. His language is a bit more clear at times, although he will sometimes mumble and not bother speaking at all if he's really unwell. But it makes me wonder whether in his case the fact that he is slowed down by being ill is what reduces his autistic features. This is pertinent at the moment, because we are going through an assessment for probable ADHD and the outcome is likely to be a trial of medication. I am in two minds - on the one hand if the medication allows his brain to slow down, he may be able to access more from the curriculum and hence make greater progress at school, on the other hand we're looking at giving him a drug which has some pretty impressive side effects. I think we'll probably agree to give him a trial period and then make an informed decision about long term treatment once we've seen how he reacts.

I guess just as we might as well have both children with chicken pox at the same time, we may as well have ASD and ADHD....

Happy Mother's Day!

2009-03-23T12:48:00.000-07:00

A day late, but as you'll see there are reasons for that. Yesterday was Mother's Day, a day I find slightly bitter sweet. Some of that is no doubt to do with the way it's become yet another commercialised merchandise driven celebration - I'd rather a hand made card and an hour in bed than a bottle of perfume (or, as I was shocked to discover, some anti ageing cream, advertised as "the perfect gift for Mother's Day - call me ungrateful, but if my son or daughter gave me anti ageing cream for Mother's Day, I'd be quite offended). The other reason is that it's yet another reminder of what we don't have.

Six years ago, on Mother's Day, I found myself holding a white stick with two clear pink lines. We danced around the flat, shaking, crying (with happiness), amazed that we had achieved this incredible thing - we had made a baby. I was stunned, as I had previously been told I would probably find conceiving difficult and need medical support, but it had all happened naturally, within three months of trying. We held each other close and from that moment on, I began to see myself as a mother. I imagined future Mother's Days, with cards, hugs, kisses and joy. I wondered what my baby would be like, how s/he would be at one, two, five, ten. In all my imaginings I never considered that I would be mothering a severely disabled child. I was realistic - things were never going to be the same, it was no longer just me and my husband, we had another life to consider, another human being to nourish, teach, love and support. But not once did I consider that I might have to deal with continued frustration, constant worry, stress, anxiety and rejection from my own child. I guess you tend to look at child rearing with rather rose tinted spectacles during your first pregnancy.

This was the first Mother's Day, of six, that I was greeted with "Happy Mother's Day!" by my child. But not by James, by Beatrix. I don't know whether James will ever learn to use phrases like that, he's just about stringing a two word phrase together, mainly "Want x or y or z" relating to food! Perhaps with time he will. I was treated to a leisurely afternoon, relaxing in my summer house, knitting and reading the paper. Though I had taken James swimming and then on his weekly social exercise at the supermarket, so I felt like I deserved some time off. I watched as the children jumped on the trampoline and climbed their new climbing frame and I felt blessed. I think this is a reflection of me having accepted things more readily now, and seeing that we can't change James, and love him as he is. For me, and for my husband, we share the view that if someone could take away James' autism, we would do it without a moment's hesitation, but that's not going to happen, so acceptance eases the burden of grief and loss.

So I'm relaxed and bathing in the hazy glow of maternal love when my husband asks me to take a look at Bea's neck - she's got lots of red spots. My bubble bursts - the dreaded chicken pox. That's a full week of quarantine at home. And then in a couple of weeks James is going to get it too. Quickly do the maths, and realise it will be the school holidays. Joy. Oh well, onwards and upwards! Happy Mother's Day - I wasn't expecting that sort of present!!!

Friendships

2009-03-16T12:04:00.000-07:00

Today when I picked James up from the childminder, he was playing with her new colleague. He had met her before, but was clearly drawn to her, hugging her, giggling uncontrollably and grinning from ear to ear. Watching the two of them together was a very precious moment - a lot of people find it hard to engage with James, and difficult to get anything back from him, so to watch her naturally follow his lead and get so much back was incredibly uplifting. It was as if he had found a new friend.

Friendships and autism don't really mix - the children with high functioning autism and Aspergers often desperately want friends but are let down by their social skills and their inability to "read" other people. This can lead to a lot of stress and even depression during their adolescent years - imagine the loneliness and isolation, knowing you're different, but unable to conform and "fit in" at a time when being part of the crowd is so important. And then there's the children like James, who have no idea what a friendship is, so aren't even aware of what they're missing out on. James is so engaged in his own (autistic) world that he doesn't notice people coming and going, and is very isolated in his "play" (if you can call it that) so anyone who tries to be friendly is ignored. Like a lot of autistic children, he prefers the company of adults and older children - I guess because they're more likely to help him get his needs met. I do get upset from time to time, but then I console myself with the thought that he won't get hung up on all the intricacies and challenges that adolescent friendships bring. No falling out with friends, no trying hard to support them through difficult times, no feeling left out when they meet new people, no worries about fitting in. Perhaps these are more "female" views of friendship, but I'm sure boys go through a lot of this too. I have a feeling that Bea is going to give me a double dose of teenage angst though, so perhaps I should be thanking my lucky stars!

My friendships are a source of support, laughter, hugs, booze and hope. Over the last two years I have met so many inspiring, special people who have helped me in all sorts of ways. I don't know where I'd be now if it weren't for them. I really need my friends, and hope that to some extent they need me, even if it is only for more yarn related advice! It's funny, when I think back to the days surrounding the time of James' diagnosis when all I could see was closed doors and doom and gloom I can't help seeing a new perspective now. It's as if he's opened doors for me, brought these wonderful people into my life and made it all happen.

Here's to autism and friendships - maybe they don't go hand in hand directly, but in a roundabout way, through joint experience and understanding, they are strongly interlinked.

Laughter is the best medicine

2009-03-10T12:07:00.000-07:00

I can tell that winter is well and truly behind us, you can't fail to have noticed the crocuses, the daffodils and the sunshine! I have even tried hanging my washing out to dry a couple of times - I love the smell of freshly dried laundry. With the dawning of spring, I feel my general state of mind lifting and lightening. I have a wave of positive thinking and feeling, with the impetus to finally drive change. I am able to take charge of all the areas of my life that need work, and actually do something about them. I honestly think I am made for hibernation - the idea of curling up somewhere warm and dark for a few months and waking up to find spring in the air holds a lot of appeal. I wouldn't miss a thing about winter - it has the two lowest points in the year for me, James' birthday and Christmas. The aimless trawling through shops and catalogues and online "bargains" in a futile attempt to find something that might interest him only deepens my depression. The sadness is palpable as we hand him a present that he doesn't even acknowledge. OK, the only thing I would miss about winter is mulled wine, but it doesn't have to be winter for that!

With my new drive and vigour comes a return of laughter into my life. I find so little to fuel my sense of humour through the winter period, but now I'm full of hope and laughter. The best source of laughter for me is usually my children - James has episodes of manic laughter which we often can't fathom, but they're so intense it's impossible NOT to join in. Bea is going through a very amusing phase and comes out with all sorts of funnies, telling my husband "you got boobies daddy" (I think she meant nipples - his physique is a LONG way away from developing man boobs!), pointing out people falling asleep in the coffee shop, telling me I can stop cleaning and go to the ball with Prince Charming (and of course, I did as she said, I'm never one to cry off a ball, and housework is a definite second to a hot date!). But topping the charts for laughter provision this week is my good friend's blog - Slightly South of Sanity. I beg you to read it. I challenge you to read it and not cry tears of laughter - I read passages out to my husband and we're both in stitches. She has such a way with words, and I know for a fact that none of this is made up! So if you're in need of a pick-me-up, don't turn to the gin, pour yourself a double dose of laughter!

General ignorance

2009-03-08T12:37:00.000-07:00

Sadly, this is not a reference to the (excellent) round in QI where Stephen Fry throws random questions out at his contestants (incidentally, his blog is here, and he has a whole dedicated website here, I had no idea you could spend so much time mulling over the lovely Mr Fry...If you don't see me for a while, you know where I am!). No, I'm afraid this post refers to the good old general public and their attitudes to disability in general, and James in particular.

Two incidents today had my blood boiling, and sadly these aren't isolated incidents. They chill me to my core, as I am seeing the world that we truly live in at its ugliest. The attitudes towards disability, the speed with which people pass judgement and make comments, the arrogance that is so blatantly displayed - this is the legacy that I am passing on to my son. This is what I have to hope he is able to overcome in order to fulfil his potential, achieve meaning in his future, and live a happy, safe life. It fills me with great sadness, as he has enough hurdles to jump and here society will add its own.

Parking spaces - a much discussed and moaned over topic in my parenting forums. The advent of "Parent and Toddler" spaces has brought with it an alarming picture of the true nature of public spirit. I don't think there is a single mother who hasn't either had to struggle with a buggy/car seat/unwieldy toddler in a "normal" car parking spot because there are no parent and toddler spaces left. The distress this causes is bad enough, but then salt is rubbed in the wound when you see the single man (or woman) jumping back in the badly parked car in the designated space. Not a toddler in sight. Not even an older child. If you dare to take them up on this, you are more often than not met with a barrage of expletives - I have been told that "I can park where I (insert expletive) like" and that "it's not my problem". I've also been told that I got my own parent and toddler space so "it's none of your business". Of course, the stores don't make it any easier for parents as the parking restrictions are rarely (in fact, I'd go as far as to say never) enforced. So they get away with it, again and again.

Disabled parking bays are another issue altogether. We are fortunate that Bea is still young so we will often use a parent bay when out and about. But James is getting older and I don't want to use the parent bays all the time. As we are in receipt of the highest mobility component of DLA, we are entitled to a blue badge. Our excuse for not having sorted this out is that we need photo booth style pictures of James, and we'd have to catch him first! I have never actually used a disabled bay, but am sure that once we have the badge it will be very useful. So I am mindful of the issues that badge holders have - if it frustrates parents to be unable to park in designated bays, imagine what it is like for blue badge users (here I am referring to the legitimate holders - it's quite frightening to hear the statistics for the black market value of blue badges and how many fraudulent badges are flying around out there). On a Sunday I take James swimming at the local pool. The car park is usually full, but there are about 5 disabled bays. I have occasionally been tempted to use them, but refrained as we don't have a badge at the moment. I ended up parking quite a way from the pool, which was inconvenient but no huge problem. However, on my way back to the car, I had a double take when I saw the following. A large 4 by 4 was parked over two disabled bays. In the front sat a man reading his Sunday paper and playing the radio. Not a blue badge in sight. I couldn't let it pass and made a comment about how if you are going to be selfish and park in a disabled bay at least to show some consideration and not park over TWO bays. I'm sorry to say that he didn't even acknowledge my comment, let alone move his car.

Not 10 minutes later, I was to experience further frustration at people's selfish, ignorant behaviour. I continue to take James out to a variety of social settings, to help him learn life skills. If I don't teach him these things, who will? Who is going to show him how to hold a basket, fill it with staple food and take it to the checkout? Who will teach him to empty the basket onto the conveyor belt and hand over the money to the checkout assistant? Unlike Bea, he doesn't naturally learn from observation, he needs every step taught to him, over and over again. Recently, he has started to hold a basket, which hasn't come naturally to him. He holds it awkwardly, allowing items to spill out if not reminded to hold it upright. He walks with a stumbling gait, trying to maintain his balance with the basket. One thing I noticed early on in James' development was that he would walk right over our feet without noticing they're in the way. He has continued to bang in to things, to walk into people, not looking where he's going and unaware of obstacles (he has even walked into lamp posts and letter boxes). In the supermarket today, teetering up the aisles, he must have looked quite strange, wearing his rucksack with reins and screeching to himself to help keep calm. I tend to be on my guard, making sure he doesn't bang in to other people and keep him out of the way of obstacles. Occasionally, I take my eye off him momentarily, whilst I pick something from the shelf or look around for where the sugar is hiding. As we walked along, James lolloping forward, me hawk eyed and careful, I was rather shocked to hear a comment, clearly aimed at us. "(precede with expletive), a "sorry" would be nice". If there's one thing I can't bear, it's people who make comments behind my back, quick to pass judgement and not taking the fuller picture into account. I couldn't hold back and let her know that James is severely disabled and was doing very well, and that she should be the one apologising. And followed up with a request that next time she makes her comments to my face rather than behind my behind my back. I doubt she'll change, usually the ignorant don't want to be educated.

Hidden costs

2009-03-05T11:32:00.000-08:00

There has been a recent ad campaign from a charitable organisation (to my shame, I can't remember which, but a reputable charity) which quotes the extra cost of raising a disabled child as £26000 per annum. Just to make that clear, I don't mean that raising a child with a disability costs £26000 a year total, but that it costs £26000 MORE per year to raise a child with a disability than a child without. James is 5, so my quick calculation tells me that it will cost me £338,000 MORE to raise James up to his 18th birthday than for parents of non disabled children. That's a rather large nest egg that we won't be able to leave him.... Ironic, really, as he will need the money more than most, as he probably won't be able to work or live independently.

So where does this money go? What are these extra costs? Well, some of them are hidden, results of the impact of a disability on the whole family. As I write yet another cheque for more school jumpers (he's chewed through around 6 so far and that's only in one term....) I tot that up - 18 school jumpers a year at £10 a go = £180, most parents I know buy 4 or 5 for the whole year, so he's just cost me an extra £130 or so. Add in the polo shirts I had to buy at M&S yesterday and you probably have another £40 excess cost. He's chewed through a second coat this month, I don't think many people buy three coats a year for their reception age child. He usually comes home from school with a full change of clothes on, so there's twice the amount of washing to do, and that's without the extra sheets and pyjamams that often need changed overnight. Luckily, nappies are now provided free, but wipes are provided by us. I wonder how many people have bought 6 copies of the Mr Benn DVD? James has a "thing" about spinning the discs in their cases and then biting them so they're no longer usable. At first glance, we have a sizeable DVD collection, but many of them are duplicates or triplicates, and a lot of them are unusable. We haven't actually got the time to sit down and go through them, workign out which to throw out and which to keep! When we go on holiday, we have to rent a three bedroom property as James has to sleep on his own. So even though we're a family of 4 we are looking at properties aimed at families of 5 or 6 - that's another £200 or so excess. Then there's my work - I am back one day a week, but because I no longer work out of hours, my pay has been cut dramatically. In fact, my loss of earnings is probably over the £26000 mark, so every penny I've mentioned so far is in excess of this. Our childcare costs are higher than if James were not autistic, and our childcare choices are limited so we're stuck between a rock and a hard place. For James to access any extra curricular activity, he has to be accompanied by either myself or my husband. If Bea is coming too, we all have to go, which is obviously often the point of family trips, but sometimes I would like to be able to take the children on my own somewhere.... Many families buy in extra therapy to complement (or in some instances even supplement the lack of) resources provided to them through health. I used to take James to music therapy at Nordoff Robbins in Gospel Oak - a journey of about 12 miles taking 45 minutes on a good day, a fair amount of costs incurred in petrol and wear and tear on the car. The sessions were £20 and I also paid a babysitter to look after Bea, which was £30 for the afternoon. So for a 30 minute session, it cost me £50 plus petrol... Multiply that by 30 weeks and we're talking about £1500 per annum before petrol. This is just the tip of the iceberg.

Then there are the emotional costs to us as parents. Those are not financially quantifiable, but have an impact far beyond emotional wellbeing. The impact on our wider life can't go unmentioned. If James wasn't as disabled as he is, it is likely that my husband would have climbed the career ladder faster and we would be far more financialyl stable. We're not struggling, unlke many other famlies with disabled children, but things would be easier if we had a bit more security. That said, it is perhaps ironic that around the time that James was diagnosed he was toying with applying for posts in the financial sector and had he been successful, he could well have been at risk of unemploymnet now, so James may have brought hidden costs, but perhaps he has brought some hidden protection.

And it all comes tumbling down....

2009-03-04T06:39:00.000-08:00

I knew things were going too well, that I was finally finding my feet and things were flowing smoothly. I finally got paid last month (after working for 3 months with no pay....) and James has been well throughout the term so far, so I am getting used to having more of the day to do things with Bea. We have regular respite coming in (funded until this month by our friends' donations, but now finally we've got our first payment through Direct Payments we can buy in more help) and we have a fantastic holiday coming up at The Thomas Centre. I'm actually starting to enjoy my job, and am really enjoying teaching the Imperial College medical students. James has settled well at school, the childminders and after school club, and Bea has settled at nursery well.

And then the bombshell............

At the moment, the children go to a childminder one day a week. There are actually two childminders working together, so there is always an extra pair of hands and extra support. This is essential when working with James if there are lots of other children around, as he does get a wee bit wild. So when we were chosing childcare this was really high on my list of priorities. Luckily the pair we found also had a lot of experience with children with disabilities. It felt like a huge weight off my shoulders when I rang and heard about their experience and set up. Unfortunately, they are not working together after Easter, and this is going to mean James can't be dropped off there - the bus drops him at 330 and there is another school pick up happening then. As he goes to and from school on council organised transport there is no other way of getting him to the childminder a bit later. So I'm back to the drawing board.

It's rather ironic, as I am on the steering group for Harrow's "Aiming High for Disabled Children" initiative. This is a government driven programme, facilitating the provision of short breaks for children with disabilities and their parents. It includes provision of things like after school clubs and chilcare facilities. So I'm sitting on the group, trying to take things forward and improve facilities for other families whilst my own childcare arrangements are in tatters. How ironic.....

Always expect the unexpected

2009-03-02T10:57:00.000-08:00

James constantly amazes me, I find myself in awe of all he does and achieves in spite of his disability. He drives me to distraction too, but that's children for you!

Last week my parents came to visit. They haven't been here for nearly 3 months, which is a long time when you're only 5, and could well be long enough for James to forget them entirely. After all, he's not with them that frequently, so their bond is one that perhaps doesn't come naturally. In addition, both my parents find James difficult to deal with - they love him unconditionally, and try to engage with him, but there comes a point when you stop trying. They're not there, by any means, but the lack of reciprocity gets tiresome and you feel like you've explored all avenues. I often go through periods where I am less focussed in my efforts to engage with James, usually coinciding with periods where I feel overwhelmed, depressed and miserable. I actually need to be making all this effort, because every now and again he surprises me, and it's then that I can reap the rewards for my efforts.

My parents arrival was one of those moments - the minute the doorbell went, he ran there, helped me open the door and how I wish I had had a camera the moment he saw my parents through the glass door. His face lit up, he started grinning from ear to ear, and kept chanting "Nene, Dede, Nene, Dede, hello, hello, hello!". He was like a wind up doll, except he kept on going. He climbed all over my father, demanding hugs and smiling and stroking his face. He was very affectionate with my mother too, which made her day (historically, he has always been more free with affection towards my father, so this was very touching for my mum). He does make strong bonds, and other people really are important to him. So I am bolstered in my efforts and will keep doing all I need to do to support James and help him progress.

Another "unexpected" moment came when we were at Thames Valley Adventure Playground on Saturday. As we were getting ready to leave, I gave James his coat, slightly absent mindedly. I haven't ever seen him put a coat on without help, so you can imagine my surprise when he took it, looked at it carefully, worked out which arm to put in first, hooked it over his shoulders and popped his other arm in! Wow....

So always expect the unexpected, without that you will miss many an opportunity.

Toilet woes

2009-02-20T10:57:00.000-08:00

After my last post, bemoaning Bea's lack of interest in toilet training, I thought we were on to something when she hopped out the bath, sat on the potty and produced a poo! This is the first "sign" that she has awareness of needing to use the potty for a poo, she is pretty good with wees. Sadly I was wrong. After wrangling her into a nappy last night (she was insisting on big girl knickers which would have been a disaster, she isn't even dry during the day let alone at night as well!) and buying my way out of a confrontation by offering to let her wear knickers OVER her nappy, she insisted on wearing knickers to nursery this afternoon. I was a little reticent, but she insisted she would use the potty or toilet and had chosen a special pair of knickers, so I gave up and sent her with a couple of changes of clothes. When I went to collect her I could tell there had been an "incident" - she was in different clothes, which is always a tell tale sign. Oh well, guess we've got a while to go.

James meanwhile is a LONG way off being out of nappies - he has no awareness of what's going on, no desire to not be in nappies (which I think is going to be key, once he has decided he no longer wants to wear nappies then I think we might be on to a winner), he can't communicate his need to go to the toilet, he can't communicate that he is wet/soiled and he probably hasn't appreciated that if he DID communicate his needs to us we could do something about it. Unfortunately, he has some awareness - he doesn't like having a dirty nappy on and rather than complain or moan, he sticks his hands in his nappy. I used to hear about children who would smear, and it just made my heart ache for their poor parents. Imagine living a life controlled by your child's bowel habits - fearing going out in public in case they have an "incident", living in a house that is constantly smeared, cleaning up the mess several times a day. No overnight stays with friends, no spur of the moment trips to the zoo, no chance of holidaying in a hotel. I never dreamt that I would be stuck in the same situation, praying that James would poo when we were around so we'd be able to do something about it immediately. It feels as though we are constantly on red alert - when we go out, we have to have an emergency pack, with wipes, nappies, change of clothes, antibacterial wipes and antibacterial hand foam. It's like a military operation, making sure we are fully prepared for every eventuality. Luckily, preparation seems to be sufficient - as long as we're prepared, disaster doesn't strike. Usually, disaster occurs when we're preoccupied, unable to give James our full attention. So on Friday afternoon, while I'm preparing dinner, we had one of our "incidents" - the children had been having fun in an enormous cardboard box that had contained some goodies from GLTC. I was in the kitchen, when I heard a cry of "No! James, that's POO!"from Bea. Sure enough, I run through to the playroom to find James crouching in the box, hands covered. At least she warned me this time!

The other night we had a rather unfortunate incident in the bath - I had decided to be reckless and bath the children on my own, but neither of them wanted to co-operate. I ended up putting James in the bath and going to Bea in her room. I had just undressed her when I noticed it was rather quiet in the bathroom (a bit of a tell tale sign that James is concentrating on performing....) and sure enough there was a rather loud splash! Mayhem broke loose, and some of the shouting that occurred would probably have caused most neighbours to call social services. Actually, I'm amazed how little shouting actually occurred - especially as Bea was freezing cold, James was sick from laughing whilst sitting on the toilet and I was covered in poo...

So toilet woes continue to rule my life for now. Maybe Bea will give up and toilet train herself in summer if I don't bother to try anything else....

Topsy turvy

2009-02-18T10:42:00.000-08:00

The last three years has seen a lot of blue skies thinking and turning things on their heads to try and work out the best way to tackle a situation. James' regression and diagnosis really turned my life upside down and there isn't a day goes by when I don't have to think outside the box.

When Bea was born I was still blissfully unaware of James' problems. We put her in cloth nappies at birth - much to the midwives' amazement, many of whom had never seen a cloth nappy! I found the washing just about manageable, and bolstered myself with the thought that we would toilet train James over the summer, so it was only a temporary thing. Little did I know that nearly 3 years later I would still be changing two sets of nappies. We continued using cloth at home with James until was 4 and a half, when I finally got hold of the continence advice service and we were given free nappies from the council. I thought I would finally get one child toilet trained last August, when Bea announced that she wanted to wear knickers and hated cloth nappies, but sadly this has not been the case. We had a good go, but with the upheaval of James not being in any form of placement in September, and then starting nursery and with our childminder, it wasn't really good timing. And every time we've tried again since, she has shown little interest in actually communicating her need to go to the toilet (apart from when sitting in the trolley in the supermarket, when she will even now insist at the top of her voice that "I need to go to the toilet" even when she's wearing a nappy!). I am sure that if I didn't have James' extra needs to juggle, I would have been able to knuckle down and tackle this. But my life is too complex, there are too many conflicting needs, and I can't do it without compromising something else. So once again, I feel I'm damned if I do, damned if I don't.

Siblings of children with special needs do get a different life experience - I'm not sure that they ever wish their life could be different, but I'm sure that at some point we'll have to deal with Bea's awareness tha James' difficulties mean sacrifices and different expectations for all of us. For instance, I cannot imagine us visiting friends overnight for a party, nor going on a joint holiday with another family. Once Bea starts school, it is going to be difficult for her to attend any after school activities unless James is in some sort of respite facility as I will need to be home when he is dropped off and we would struggle to walk to school and back with him. I have taken James to swimming lessons since he was 4 months, and we still go weekly - Bea has been swimming about 4 times in her life. Most of my friends with children with similar gaps are able to take them both to their lessons - I'm going to have to wait until Bea is competent at dressing and undressing herself as James still needs complete supervision to change. Sometimes when we're walking a short distance I find myself holding James' hand (tightly) and asking Bea to hold his other hand - it looks very sweet, this "older sibling leading younger sibling" tableau, but first appearances can be deceiving.....

Maybe there should be a book for siblings with special needs, one they are instructed on in utero. It would read something like this:

Don't give your parents cause for concern, ever, especially not by displaying similar signs to your affected sibling (the more I look at Bea, the more obvious her "autistic" traits are - not that I think she is autistic, far from it, but more than some typically autistic features in James are a strong and positive presence in Bea's character and personality, for instance her strong will, her persistence, her enjoyment of thrills such as spinning around and swinging high)
Toilet train as soon as possible, preferably without any involvement from your parents
Develop a sense of danger (and safety) early on in your life - or at least, don't end up dragged to A&E for x rays and plaster casts three times in the space fo 6 months at the age of 2.....
Be a listener - as a child, this means listening to your parents and (preferably!) doing as you're told. As an adult you may have to listen to your parents concerns about the future....
Don't ever say "it's not fair" because I'm afraid life's not fair. And you're going to learn that sooner than most.
Love your sibling unconditionally and show them your love, because that is going to light a light in your parents' hearts and show them that it is all worthwhile

I'm sure there would be a lot more in the book, but it's a start!

So this week has been a bit more topsy turvy than most - half term is quite a struggle for James as he loses all his routine of school. He has adapted reasonably to the complete upheaval of starting school quite well, apart from missing at least a quarter of the second half of last term! When he gets picked up at 745, my heart is no longer heavy and in turmoil - I know that he is in the best possible hands and that he is finally making progress, something we hadn't seen for so long that we'd almost given up hope. But holidays fill me with dread, worry and nervous anticipation. Thank goodness that there is a playscheme at Kids Can Achieve, and James goes there every day it's open! I've used the time he's there as an opportunity to take Bea places I can't go with James in tow - today we went to the garden centre and a lovely cafe and yesterday it was shopping...

On a totally bizarre last note, I found one of my telephones in the kitchen sink this afternoon. I have no idea how it got there, who put it there (I suspect James, but can prove nothing....) and whether it got damaged, but it just shows how chaotic and topsy turvy my life is at times.....

It's my birthday!

2009-02-16T11:42:00.000-08:00

Well, actually, it's my blog birthday - I just realised that my first ever blog post was written a year ago today. I can't believe it - it feels like yesterday. A friend had suggested that I blogged about my experiences with James, as she felt I had amassed a wealth of knowledge and resources and that other parents might find my insight and experience useful. I have no idea if this is the case, or whether there are a total of 5 people who read my blog, but I know that this blog has helped me more than I imagined it would. I have a "safe" space to share my ups and downs, to talk about painful, poignant moments in my chaotic life. Somewhere I can deal with my problems in a lighthearted manner, having had time to reflect on the experience I can usually see the funny side of what was, at the time it occurred, often a frightening, overwhelming or frustrating situation.

So what are my birthday wishes? Well, I would be really intrigued to know who, if anyone, actually reads this blog, and how you came across it. So, messages would be highly appreciated and as a birthday gift I will donate £1 for every response to this post to my local branch of the National Autistic Society. There's an incentive!

In the last few days I've found myself in a couple of interesting situations. Last week at our coffee morning, I was gobsmacked to see a friend come in for coffee. It turns out she has concerns about her son who is a month older than James. I felt so empowered by my ability to support her and guide her through the various stages of the process and I felt that it is this sort of work that I should be doing now. This was reinforced today at work when the mother of one of my patients told me that her older son had recently been diagnosed with autism - we sorted out the (simple) problems of her younger son, and then I armed her with knowledge and information about autism. She left with a prescription for her youngest child and a list of "homework" to do before our next appointment. It felt like I could give her this information and support knowing she was listening to me - when you are talking to another mother who has experienced the same difficulties you are talking to a kindred spirit. I felt she really listened to me and just hope that when I next see her she has applied for DLA, contacted HomeStart, sorted out Portage and got herself on an EarlyBird course! That's quite a lot of homework...

Anyway, I'm going to sign off now, but wanted to say one last "Happy Blog Birthday" to me!

Just how far have I come....

2009-02-13T14:01:00.000-08:00

The last couple of days have really brought home to me how far I've come over the last two years. This time two years ago we were spending every weekend dragging ourselves round huge numbers of houses in our quest to find a home for the family. We had just received James' "formal" diagnosis and our flat had sold with a one day "open house" so the pressure was on to find a suitable property. I knew that moving was the right thing for us, we needed more space and the postage stamp sized garden was up a set of precarious stairs so James couldn't even go outside for two minutes on his own.

James has always been drawn to the great outdoors, so our house hunting priority was a house with a good sized garden. I think that we've done well - our garden is around 80 foot long and while it is northish facing, we still get plenty of sun (well, we used to get more but then the neighbours built an enormous extension that steals a lot of sun in summer boo hiss...). But just like the rest of the house, it was heavily neglected and run down and unsafe to leave the children in alone (when I say alone, I mean with me watching closely from the kitchen whilst cooking/cleaning/on the phone, not that I leave my children in the garden while I go out shopping!). We had a complete garden makeover from All Gardening last May, and it was the best thing in the house that we spent money on. The garden has gone from being an eyesore to being the talk of the road and we spent every dry moment of last summer out there (and quite a few wet ones too!). I'm looking forward to seeing the garden blossom over the next few months - spring is well and truly here (I saw snowdrops today as opposed to snow) and we're getting a feel for our garden through the seasons.

Anyway, I seem to have meandered from my point, which was how much things have changed for me in the last 2 years. I think the time around James' diagnosis was perhaps the bleakest in my life. I felt lost in a downwards spiral - I had a 6 month old baby who still needed me completely, and I had just found out my eldest child had a lifelong disability. I felt lost, lonely and scared. Add to that the certain knowledge that I would be leaving my (small but perfectly formed) support group of childminder and friends near our flat when I moved. I had one close friend who had moved nearby to where we were house hunting, but we were going to be travelling very different paths. I was now thrown into a maelstrom of appointments, interventions, training courses, literature on autism, forms to apply for statement of special educational needs, professionals meetings - not the idealised pathway that I had imagined myself travelling as a mother of two juggling life with two children and a fulfilling career. I began to question my abilities - as a mother, as a wife, as a carer, as a doctor, as a friend, as a paediatrician. How was I ever going to cope? What did my life hold for me? What was the point? I just wanted things to be the way I had expected they would be.

It is only now that I see how deeply I grieved for the loss of my son - of course, I hadn't "lost" him in the conventional sense, indeed he was very much alive, but I no longer had the child I thought I had when I held him in my arms through those long, cold December nights. It felt as if someone had stolen him from me and replaced him with a child I no longer recognised, one I had no connection to and one I couldn't understand. But I was wrong - I do and did understand him, probably better than most people, and our connection is very deep and meaningful to both of us. As time has passed I realise that he is still very much the infant I gave birth to, I just didn't know how he was going to grow up. The more time I spend with him and the more I think about his early years, the more easily I have accepted that autism was always a part of him (his poor feeding, his screaming episode the first time we went swimming, the way he didn't really "play" with my friends' children which I initially put down to him not seeing them often, the way he enjoyed the way I read "The Very Hungry Caterpillar" but if someone else read it he turned off because they weren't reading it the "right" way, the way that when I was heavily pregnant I let him spin CDs in their boxes just to get 5 minutes peace, the way his face lit up the first time he went on a roundabout). But the bleak times felt relentless - I cried rivers of tears, I cried anywhere and everywhere - in the park, on the train, at the medical appointments, with friends, with my husband, on my own, whilst watching TV, on the phone. I was terrified of how I would manage once we moved - where would I go with the two children? I couldn't take them to toddler groups on my own as James' behaviour was too difficult to manage without one to one supervision.

Two things changed all of this. My friends on Damsels pointed me towards Home Start a wonderful organisation that provides support and help to parents of young children in a variety of difficult situations. I was able to contact them before we moved and a volunteer was identified for me very soon after we moved. Just that chance of an hour a week with some help for me was liberating. I also contacted the local branch of the National Autistic Society and was very lucky to talk with the local support coordinator who put me in touch with a variety of agencies such as Kids Can Achieve.

So here I am, nearly two years on, finding myself the one who provides support, information and a listening ear to parents who have found themselves on the precipice around diagnosis. What a long road it has been, with a lot of uphill struggles, but I think I am somewhere near to having dealt with my grief and resolving the issues that diagnosis brought up for me.

Coming out of hiding!

2009-02-12T11:27:00.001-08:00

It's been a while hasn't it? The last 5 months have been quite a roller coaster but I think we're on a pretty even path now. No doubt there will be another major dip around the corner, but for now I'm going to enjoy what I have. Over my weeks of absence, I had moments where I thought I really was drowning, but the clouds have lifted and spring is in the air and with it the smell of hope, joy and life. Compared to this time last year my life is infinitely easier and as a family I think we are all happier.

I'm not usually one for list but I thought I'd just wrote down a few of the issues that contributed to my absence! They're in no particular order, just as I remember them.

Renal colic - at least this bout didn't require 3 days in patient management. I was mortified at having to call an ambulance but I couldn't have taken my husband and the two children (unfed!) to hospital at 730 in the morning. The ambulance crew were not impressed when they saw how we had to secure the door behind them - a dead lock, chain and 2 stair gates were seen to be putting them in potential danger as they wouldn't have been able to escape easily. I had to point out that if it were not for these measures, our son would be well known to the local police and possibly the ambulance crews....

Infected blisters (severe enough to develop into an abscess which required draining and a course of antibiotices) caused by ill fitting shoes - sorry Clarks but I won't be using your shoe fitting service again. Luckily there is a fantastic service run by Footling where a qualified fitter comes to your home and measures your child's feet. I will never take James to a shoe shop again!

Severe crush injury to Bea's fingertip - sustained on the day that my husband was rushed to hospital (see above). So having told him we couldn't possibly accompany him, we ended up having a jaunt to the A&E department anyway. Luckily it wasn't fractured, although it has taken a LONG time to heal. I expect a call from social services any day now as Bea has had so many A&E attendances over the last 6 months. It is both a reflection of the fact that she is a second child and that we are often preoccupied with keeping James out of danger that she attempts rather brave and foolhardy stunts.

Full time school starting - although, to be honest for the first term James didn't make it through a full week as he caught so many coughs, colds and infections that he was either sent home or kept home at least one day a week before Christmas. The school is amazing - James is so happy there and is making so much progress it makes my heart leap with pride. To think that we were beginning to think we would never hear him talk again when his regression was at its worst.

My return to work - it's not been without hiccups and difficulties, but I am starting to get used to being at work one day a week. More about work another time though.

Christmas - the most stressful, difficult and downright miserable time of year for us. I find the whole thing just gut wrenchingly awful, as if someone is taking my soul from me every day for weeks. There seems to be no end to the festivities and wishes of a happy and peaceful Christmas, and few people truly understand why I find it so difficult. Next year I'm planning to build a den and hibernate. I'll go in in November and come out mid January.

I think that those are the major things. But as I say, things are brighter and better now, and I feel we're coming out of the fog. I hope I'll be around a bit more now.

Precious moments

2008-09-28T12:23:00.000-07:00

Sometimes life stands still for a few seconds and I capture a "precious moment". I seem to have had several this week and they have taken me unawares, hitting an emotional core I didn't realise I had, making me well up and take a deep breath, making me deeply grateful for all that I have.

When we first decided to have another baby, still blissfully unaware of all James' difficulties and the path that we were going to follow, we imagined providing him with a sibling, a lifelong companion, a playmate, someone to share his childhood with. In the months that followed his regression and diagnosis, I found myself in some very dark places, wondering whether we had done the right thing in having another child. His autism became apparent around the time of Bea's birth and while I don't blame her (or us) for that, I wonder if we'd be treading this same path if she hadn't been born then. On the other hand, we never had to struggle with that difficult decision to have another child KNOWING he was autistic. I didn't spend my whole pregnancy concerned that I would have another autistic child. I enjoyed my second pregnancy more than my first, and felt much less unwell and exhausted. But once James' problems became apparent, my downward spiral started - I watched Bea constantly, trying to see if there were any early indicators that she too might be autistic. She slept well and soundly, and was a quiet, content baby - I worried. She was happy to watch what was going on around her, but was not particularly vocal - I worried. She loved rough and tumble play, spinning round, going upside down - I worried. She often failed to respond when I called her name - I worried. I think I have only just stopped worrying now - I see her running around with her doll, having tea parties, making "stories" up, using her imagination, looking directly at me when she talks, using long sentences with personal pronouns and I think "gosh, I think we're almost out of the woods". Then she starts on a jigsaw - not a 6 piece or inset jigsaw for her, no she's tackling 24 piece jigsaws and managing with little effort. And the niggle of doubt comes back.

Regardless of any autistic features she may or may not show, she has recently become a hugely important figure in James' life. When she was relatively "new" we tried to bath the children together - James would automatically turn his back on her, attempting to ignore her presence altogether, only interacting on his own terms (well, what we did was sung "If you're happy and you know it kiss your sister" which he duly did!!!). I spent hours crying my eyes out, convinced she would never be able to forge a relationship with him as he would avoid her at all costs. But recently I have had many a "precious moment" as I see more and more sibling interaction - Bea will take has hand and walk by his side when we are out and about. He enjoys her presence on the trampoline and I have fought back tears when I have seen him holding out his hand to her and then smiling his beautiful smile as she takes is and they start a "game". I don't understand the rules of this game, I don't even know if there are any, but the squeals of laughter and the look of delight on both of their faces shows me that they are sharing a "precious moment" of their own. The other day Bea told me that "James couldn't talk" because "James is different" - I was speechless. I often tell her that James is autistic and can't talk, but I wasn't sure how much she understood. Clearly more than I thought.

Perhaps the week's highlight was yesterday evening. I was absent mindedly blowing into a bottle to create a muscial note, a throwback to my days as a flautist, and James picked up his lidded beaker and started blowing on the spout and making direct eye contact with me. I think this is the first time in over a year I can put my hand on my heart and say he actually "copied" me. A very precious moment.

The drugs don't work...

2008-09-20T23:23:00.000-07:00

Strictly speaking, I should entitle this post "The hormones don't work...." but I'm not going to be too pedantic.

Why am I here, blogging at 7am? Once again, it's one of the joys of autism. Many people (both adults and children) with autism have sleep disturbance/difficulties. Countless exhausted mothers have dragged themselves to appointments with me, looked at me with eyes weighed down by chronic sleep deprivation and begged me to help their child sleep. Some wake up in the middle of the night, unable to fall back to sleep and proceed to ensure no one else in the household can get any more sleep. Some are unable to switch off and get to sleep, turning bedtime into an exhausting "game" involving parents putting them back to bed and the child boucing straight out again. As with many autistic behavioural patterns, bad habits become entrenched and it can be impossible to break the reliance on certain rituals (eg the light on, watching DVDs, jumping on the bed, or, for the parents, lots of caffeine!). James dares to be different - as with many of his autistic features, he is inconsistent. One night he will fall asleep at 8pm and we won't hear a peep out of him until 7am. We daren't sleep soundly, but enjoy the peace and quiet. The next night, he'll be up until after 10pm, much of it spent jumping around on his bed, pulling the covers off his bed and generally causing as much chaos as he can in hhis tiny box room. After a "late" night, he may sleep late with us having to wake him at 8am, but he often wakes in the small hours, screeching, jumping and making sure that if he's awake then so are we. Other nights he'll fall asleep at 8-9pm and we will lull ourselves into a false sense of security - tucked up in bed at 5am the grim reality of autism rears its ugly head once more. We lie there, hoping that a miracle will happen and he'll go back to sleep. The bed is warm and inviting and a sanctuary from the reality of what is happening in the next door bedroom. We dose fitfully, trying to ignore the call of the wild. But some things can't be ignored and we reluctantly rouse ourselves and start the day, exhausted.

In the late 70s, many children (not just those with autism) were given promethazine (phenergan), trimeprazine(vallergan) or another sedating antihistamine. The problem with these is that they are using a side effect (drowsiness) of the drug's main property and were never tested in children. Though in fairness, the majority of drugs I prescribe for children are not tested on children. Many families would complain of the "hangover" effect and children would become either dependent on the drugs or they'd need larger and larger doses as they became resistant to the drug. We'd switch around, the same would happen. So when melatonin was first introduced in the late 1990s, it was hailed as the solution to all ills. On paper it looks ideal - a naturally occurring hormone (now synthetically produced rather than from animal brains which carried the risk of viral transmission) that is an essential factor in the circadian rhythm and hence in sleep. Given 30 minutes before bedtime, it causes a natural drowsiness and aids falling asleep. There is evidence that people with ASD have lower levels of melatonin production than average, and that may explain some of the sleep disorders apparent in this population. At the moment, melatonin is only available on a "named patient" basis in this coutry. This means that it can be difficult to get hold of, many pharmacies don't stock it and if you get it from your consultant/hospital you have to make a trip up there to pick it up. In the US it is available at health food shops as the FDA classes it a "food supplement". So when a friend came over from the States recently, she brought some liquid melatonin for us to try.

Was this the miracle we'd been hoping for? A full night's sleep? Uninterrupted? No bouncing around? No bed clothes ripped to shreds in the morning? Getting a dose into James wasn't as hard as we'd imagined - mixed into yoghurt or a fruit smoothie it was completely disguised and he took a full 2mg dose. We bathed him and put him to bed. 15 minutes later we were in shock - he was fast asleep. It had WORKED!!!! We had a wonderful evening, chatting and watching TV (the first time in months we had sat down together to watch TV). We fell asleep earlier than usual ourselves, we were far more relaxed than usual. At 4am the world came crashing down. James woke up but not his usual quiet squeaking and giggling. This was full on, destructive jumping, ripping, screeching, yelling. Often if he's awake before 5am, he'll fall asleep within an hour. No such luck this time - we tried all our usual tricks. We brought him in our bed (he just pinched me and clambered all over daddy), we gave him water (he chucked it back at us, literally), we offered him some toast (he gave a vehement "NO!") and eventually we just left him to it. He didn't stop until we took him down for breakfast nearly 4 hours later. Needless to say, we didn't get back to sleep and decided to avoid the melatonin for a while! There are some slow release preparations available, and I will try to get hold of some of that, but meanwhile we're trying to find the optimum dose for James. We thought we'd finally hit the jackpot a couple of nights ago, but with a 5am start today I think we're going to have to reconsider! Wish me luck (and a good night's sleep tonight....)

Timekeeping

2008-09-20T10:25:00.000-07:00

If I'm honest, I've never been good at timekeeping. I was fine when at school, held down my Saturday jobs and even did well in my first couple of years at university. I think the descent to current levels began when I embarked on my intercalated psychology degree. I went from having 5 full days, starting at 9am and finishing at 5pm to being a free spirit. Days were usually lax, perhaps one or two lectures and the occasional tutorial. I was busying myself reading and writing essays and projects and was self directed. Then gradually my standards slipped and I found myself sneaking in the back door for lectures, asking for extensions for essays and generally kicking back and relaxing. Nowadays, I sometimes find that rather than having "get up and go" I've got "get up and sit back down again"!!! Obviously I didn't do too badly, as timekeeping has never been an issue at work, but I do find that I get behind in projects as I over commit myself - for instance, at the moment I have about 5 projects on my knitting needles/crochet hooks and plans for at least 10 more!

Once you add an autistic child into the equation, you can forget about ever being on time. Usually by the time I've checked through the list of essentials we need for the day (nappies - check, water - check, Little Life rucksack - check, change of clothes - check, change of clothes for ME - check, snacks - check, money - check, wipes - check, RADAR key - check, fruit - check, sense of humour - check) James has got undressed, eaten the snacks, needs a nappy change and I'm close to despair! So getting anywhere on time with him in tow is pretty unusual. I do try my best, and have set my car's clock to run 5 minutes fast (though I probably compensate for that in my head so it's not that helpful overall). Despite my efforts, I usually fail, but occasionally I surprise everyone, including myself. Today we surpassed ourselves - we managed to arrive at a birthday party 24 hours EARLY!!! Do you think we'll make it on time tomorrow?

What a day....

2008-09-18T12:09:00.000-07:00

Whirlwind. Hectic. Frantic. Frenetic. Squealing, Shrieking. Fast. Tiring. Busy. Full on. Tiresome. Embarrassing. Awkward. Heartbreaking. Uplifting. Exhausting. Physical. Relaxing. Warm. Mystifying. Hysterical. Lovely. Fun.

These are the words I'd use to describe today. But when I sit and think hard about it, they describe autism. Well, they certainly describe MY experience of autism, and a full day with James usually involves most of those feelings/experiences/emotions.

This morning we managed to get ourselves out the door by just after 830 - we're getting closer and closer to the planned departure time of 8am for when I finally go back to work! I dropped my husband at the station (feeling very much the Metroland wife!) and then dropped Bea with the childminders. On to James' new school where we had a session in the hydro pool for all the children in the new class. James has always loved swimming - well, apart from the first time I took him age 4 months where he screamed so loudly and so much that he managed to give himself a petechial rash which is usually seen in meningococcal disease. That was a pretty fitful night of sleep for me! We have been going regularly ever since, and he has really shown an interest in the water. We have our best communication when we are swimming - he'll ask for my hands, or ask to swim on my back and I feel really close to him. The past year has seen an end to our shared swimming sessions as he has started "proper" swimming classes where I sit on the side and he goes in with his teacher. It was nice to get back in the water with him, and enojoy some special time with him again. The teachers were impressed with him and hopefully we'll be able to set up a regular swimming session within his new timetable at school. I have volunteered to go and help for that class.

After that, we went up to the weekly parent support group. James ate his way through ALL the crisps and biscuits provided which was a little bit embarrassing, but then the other parents have direct experience of children with special needs, so didn't blink an eyelid! I have been toying with the idea of setting up a support group for parents with young children with special needs, and we discussed this at todays meeting. It sounds as if I'll have lots of support and interest, so I am going to write a draft proposal over the weekend. I will probably approach Kids Can Achieve so that we can apply for joint funding. I really think I can make this idea a reality and am enthused about the concept, so am determined to make it work. Watch this space!!!

I was able to buy some second hand school uniform at the support group, which James was happy to try on. I think it hit me then - he is really going to go to school. He's grown up so much recently that I find it unbelieveable that in a few weeks he'll be off on the school bus on his own at 8am and not back until 430ish. If I'm honest, I'm worried that the days are going to be too quiet!!! But I'll be brought back to earth with a bang over half term - his childminders are taking a week of leave then....

After a quick stop at home, which left enough time for me to confirm my post as a group leader for the medical student tutorial groups, we rushed off to our annual allergy review at St Mary's. James usually loves going on the tube, but was petrified today. I literally had to pick him up and carry him on, he was rigid. Once we were sitting down, he was fine, and I got on with some knitting while he stared out the window, looking completely normal. I find that so frustrating at times - he has no outward signs that he is actually quite severely disabled. I guess if people listen to me for long enough, and watch him closely enough, they'll cotton on pretty quickly that there's "something" not quite right, but I am hugely aware that his autism is a hidden disability, with no outward signs to mark him as autistic per se.

Good news from the allergy perspective - he is ready to eat nuts!!! We have a formal nut challenge with peanuts in two weeks, but are to try and get him to eat other nuts from now on. Roll on Nutella sandwiches and cherry almond slices! Of course, as he hasn't eaten nuts for 5 years, he'll no doubt refuse them point blank.... He is still on an egg free diet - well, he's allowed egg as part of a dish eg egg fried rice or in cakes. Hopefully he'll grow out of his egg allergy in time, but persistence at age 5 means it will probably be in his early teens.

Now we know what the uniform is, we need to kit James out with appropriate clothing - I have never bought black or grey up until now, so had a quick look around Oxford Street for appropriate schoolwear. He had another frozen moment at the top of the escalators - he'd been fine coming up, but was not happy about coming down. Once again, I literally had to pick him up and shove him on. I've no idea what people around thought of me.

So I'm home now, exhausted, exhilerated, acheing, happy and content. I wonder what tomorrow will bring?

Breaking news!

2008-09-08T10:29:00.000-07:00

It's been a difficult week here - James is at home every day as his school had been unable to recruit a new teacher for his classroom. I've gone from him being at playscheme 3 days a week or more, to him at home full time and was already feeling the burnout hitting me. To add to my woes, over the weekend I developed labyrinthitis/vestibular neuritis and have been confined to my bed - I can just about sit up to read things on the computer and was able to do a bit of knitting this afternoon, but I have mainly been sleeping. Luckily, my husband was able to work from home today and the children had their first settling in day with the childminder (in the hope that I'll be going to work soon - but that's a completely different thread).

Just after 5 o'clock I got a phone call from the Local Education Authority to inform me that the school have been able to recruit a teacher! Very last minute (there can't be that many teachers who are out of work in September!) but excellent news for everyone. There will be a three week induction period during which time the children won't be there, but at least he'll be at school before half term! I can't believe it - we were prepared for him to be off school until November or even all term so this is amazing.

I'm over the moon, although my emotions are a bit labile at the moment, and I'm suddenly thinking is my wee boy ready for big school already? How the last 5 years have flown by - to think that 5 years ago I was heavily pregnant, anticipating the arrival of our first born and planning my shopping! I had fallen hook, line and sinker for all the media pressure to have the best pram, the perfect cot, the cosiest floor rug and was buying into the "lifestyle" of being a parent. Had I known what I know now, I would have saved most of my pennies. If I were to do it all again, from scratch, I would buy about 3 things - a good quality sling, an Amby hammock and a supply of Tots Bots nappies and Weenotions wraps. Oh and a supply of yarn from Cafe Knit so I could knit up lots of lovely hand knitted garments. As we often say in medicine, the retrospectoscope is a wonderful invention....

Here I am five years on, two children under my belt and James is about to start school. OK, not the school we would have expected him to go to (my husband bought a copy of "The Good School's Guide" almost as soon as he was born) but then how many of us truly walk the path we'd planned throughout our lives? The most important thing is that it is right school for him, where he can make progress and thrive. I can only hope that this happens for him and for us.

The kindness of strangers...

2008-09-06T11:41:00.000-07:00

I am just overwhelmed, amazed and speechless. That a group of strangers care enough about me and my family and our current difficulties that they have clubbed together and paid for some respite for us for James. But then I shouldn't be shocked, really, as that is the whole ethos of an internet forum - it's there to support people in all sorts of ways. I often find myself giving medical advice on threads about children's health issues (although I always cover myself by saying that I can't diagnose without seeing the child) and I am now considered an expert in baby led weaning and sling wearing, so I hope I have helped people with problems in the past. Now it's my turn to receive some greatly appreciated help and I am stunned. I am also angry as if the social services department was doing their job properly and handling their account appropriately, there would be plenty of funding for us to access respite through them, rather than having to depend on the kindness of strangers. It seems unfair that the government spout political nonsense about "Every Disabled Child Matters" and that families of children with disabilities are entitled to short breaks, yet the funding isn't avaialble to give this desperately needed respite. Or perhaps the money is there, it just isn't used properly. How the people who make their decisions, and suggest that our case isn't strong enough, can look at themselves in the mirror, I don't know...

Talking of kind deeds, on Ravelry, there's a forum called "Random Acts of Kindness" which is a wonderful set up where you make/give someone an item just because. You can make a wish list (I really struggled with that as I'm not particularly good at asking for things!) and then people either surprise you or contact you to offer something. This week I received a set of double pointed needles and have started knitting in the round - a skill I thought I'd never master, but which is deceptively easy! Another kind person sent my husband some gummy sweets - he's now stopped complaining about my knitting forums! I've sent out a couple of books and am making some scarves for people, so I feel I'm doing my bit. I am a strong believer in karma and it seems that the karma fairy is being good to me at the moment....

It's all go here!

2008-08-29T12:17:00.000-07:00

Life in the fast lane isn't usually a phrase I associate with myself (I guess I see myself lacking in get up and go - I'm more "get up and sit down"!!!), but recently I've pulled my socks up and seem to be getting places fast. Or at least, faster than usual! I am trying hard not to procastinate so much and am finding I'm less weighed down by indecision. My husband has even commented on how much easier I'm being and how much happier we are at the moment.

As you know, I'm hoping to get back to work very soon. I had hoped that I'd be at the hospital induction next week, but that's looking unlikely now. Just as well, really, as we haven't got proper childcare sorted. I had used Gumtree to advertise for a nanny. That was quite an experience - the responses included one nanny who said "I hope you have a nice big car for me to drive" and plenty of people who assured me they love children and watching them play and use their imagination. They had obviously failed to read my (detailed) advert which clearly stated James' difficulties and mentioned a need to have experience of special needs. Oh well. We did come across two fantastic potential nannies, but sadly their circumstances meant we were unable to employ them. I was planning on chosing a "good enough" candidate but thought I'd give the local Children's Information Services a ring and find out whether there were any local childminders with experience of autism. To my surprise a letter landed on my doorstep today with three numbers. I called the first and was amazed to find a vacancy for both children on the day I need. It's not often that the Gods look favourably on me, so I'm grabbing the bull by the horns, taking the children to meet her next week and hopefully they'll start with her the following week. It's such a weight off my mind to know that the person who will look after them will have a degree of understanding of James' needs and difficulties. He needs patient, quiet, dependable carers who will give him the extra attention he thrives on and I have a gut feeling that this is the carer for him. The bonus is that her house is on the way to work and a stone's throw from the station!

Sadly, it's not all go at the LEA - they confirmed that the school were unable to recruit a teacher so there's no way James will start at his planned school this term. I am devestated to say the least. But I will keep up my fight to try to get him into Radlett Lodge School as soon as possible. We have an assessment date soon, so that's a start.

Another kick in the teeth was when my social worker informed me that we had been turned down (again) for respite. I find it hard to believe that in this day and age we spend more money on arms and defence than we do on health and social care put together. From tomorrow, James is at home 24 hours a day, 7 days a week and I get no help or support from any voluntary or statutory agency. Yes, we'd rather send soldiers to Afganistan than help a desperate mother to grab an hour a week of much needed respite. It's outrageous.

Branching out

2008-08-14T11:00:00.001-07:00

Wow. How things are turning around and in a good way. I am quite stunned at the way this week has panned out.

First of all, I received all my goodies to embellish my items for "Made for you, by Shamu". I am now the proud owner of business cards, sticky labels and post it notes! Just waiting for my labels to arrive and I'll be off. I am in a very productive mode at the moment - Ravelry have been running an Olympic knit-a-long and I've signed up to create 11 projects before the end of the Olympic closing ceremony. My husband is now a crochet widow although he's not complaining too much as I am including items that I've left aside for ages and am determined to finish them. I'll load some photos and prices up on my website later so come and have a look! If things go well I may open an Etsy shop as I've been browsing a lot and am really excited by all the beautiful crafted items there.

Meanwhile, my husband has had three job offers in the last two weeks. This is the man who has been in the same job for over 8 years (this is quite unusual in his line of work, a fact that was celebrated at a lunch in his honour earlier this year!) so it's been quite an upheaval. He accepted one of the offers earlier this week, having considered the terms and pay rise (less holiday, more pay) and finally told his immediate boss yesterday. To our surprise, his current company have matched the offer so he gets all the perks of his current job and the pay rise we need so badly. Plus he doesn't have to write a letter of resignation!

Talking of jobs, I have my meeting with my consultant next week and am quite excited about the prospect of going back to work. I've just got my head around the thought of leaving the children while I swan off to work and childcare is almost sorted. Then a letter arrives on my doorstep asking whether I would be willing to meet some first year medical students and talk about James' condtion and the impact it has had on our lives. This will be their first exposure to "real life" patients and it is an important part of the curriculum so I was happy to agree. While I was on the phone I mentioned my professional interest and that I hold several medical education certificates, and asked whether I could work with the department in any other role. So as long as I can get my consultant to organise an honorary contract, it looks as though I've just got myself another job as a student tutor for the patient contact course! I am really excited about that and really pleased I took the bull by the horns and asked. Sometimes it pays to ask.

The good life

2008-08-11T11:12:00.000-07:00

I am definitely having a mid life crisis - I found myself chatting to a friend last night while making damson cheese, as we had a glut of damsons and I'd already made over a kilo of damson jam last week! I prowl my vegetable plot and inspect each and every specimen - I have a couple of ridge cucumbers, several courgettes, peas, aubergines, chard, carrots and lettuce that are all doing well. Harvesting should begin soon, although the amount of damsons I've had to deal with have kept me busy! So I have decided that this year all my Christmas gifts are going to be home made - I have already got the jams and cheeses ready and labelled and have made a list of other jams, jellies and chutneys that I'm going to make. So everyone will receive at least one foodie gift.

I've also thought long and hard about my knitting and crocheting, and have decided to try and make some pocket money selling my crafted items. So I've set up a blog that will showcase some of my creations and eventually help me sell some of my items - come and have a look and let me know what you think. I've called it "Made for you, by Shamu" and have already comissioned some address labels and business cards. My friend Vic, who has set up her new web based yarn selling business, Cafe Knit, has a stall at Queen's Park Day and I've offered to go along to help out. In return, she's going to let me put some of my wares on show for sale - so if I don't update my blogs much over the next month it's because I'm so busy knitting!

Growing up

2008-08-08T15:55:00.000-07:00

This is going to be a memorable few months with changes aplenty afoot. As James gets closer to his fifth birthday, I am more aware than ever before of the years passing. He is growing so fast and the years just fly past - I still remember his third birthday, when we were stuck in a limbo between being concerned and having discussed autism and actually getting his final diagnosis. It is only because I have been through the process, I can truly understand what a difficult time that is for parents. I refused to celebrate his birthday - I felt we had so little to "celebrate" - his regression was hitting a peak (or so I thought - little did I realise it would continue for another 18 months albeit at a much slower rate) and I felt further and further removed from his life. I had my very being shattered - if I couldn't predict and pick up my own son's autism, then how could I do it in my professional life? How would I cope with being at work and doing on calls with an autistic child? How could I sit across the desk from a family, asking them questions about their children, knowing that their answers echoed my own? Some of these remain unanswered - I still regularly cry and admonish myself for not having recognised James' autism sooner. My husband asks me what good it would have done, what it would have changed, how it would have helped James or us, and I can't find a good enough answer. The truth is that no matter when he was diagnosed, his current level of understanding and achievement would be no different. But you can't help thinking....

So in the next few weeks we are hitting some pretty grown up milestones - James ought to start school (depending whether the LEA can identify a school for him....). Unlike nursery, where he was only accessing 2 hours a day (and I was only getting 2 hours time away from him) he will be going to school for a whole day at a time. I won't know what to do with myself! I have had a taster of the freedom this will bring as he's been at the playscheme at Kids Can Achieve two days a week over the holidays and I find myself amazed at how much Bea benefits from the time alone with me. I can actually do activities with her that she's missed out on, such as taking her swimming or going out for lunch. Impossible with James in tow or during his 2 hour nursery session. But I still wonder how we're all going to cope when James starts school - for a start, as he will be going on school transport, we'll have to have him ready for the bus before 8am! That's going to be quite a feat, I can tell you (sleep deprivation means that I am VERY sluggish in the mornings....). I have a sneaking suspicion that he will be shattered and end up falling asleep on the bus on the way home, which will be a disaster for us as he then won't go to bed until around 10pm. I'm going to have to do some preparatory work for that too. Packed lunch will be a joke - at Kids Can Achieve he rarely eats his lunch until we're in the car on the way home, so who knows what he'll do at school.....

Meanwhile, Bea is growing up too - she has started to show a distinct interest in toilet training and is running around in knickers most of the time. I find myself excited, pleased and sad all at the same time - she is certainly no longer a "baby" and I mourn that loss. Yet I know how frustrated I get about James' retention of infantile behaviour, so I can see I am contradicting myself! As it looks as though James will be out of school for the greater part of next term, I have taken the step of enrolling Bea in nursery - another huge step for both of us. She starts next week and will be a year and a half younger than James was when he first went to nursery! But I know it's for her benefit in the long run, as she needs role models and peers that don't have autism so she can learn acceptable behaviour from them as well as having the structure that the nursery will provide. It's going to be a busy weekend, sorting everything out....

Escaping....

2008-08-03T11:49:00.000-07:00

It seems so long since I updated my blog and there's been so much happening I don't know what to omit and what to write about!

I'm sitting here, in my tranquil, quiet, no children zone (aka the lounge!) and watching the rain fall down. It's hard to believe that it's only the beginning of August - it feels more like a late autumn day. For the first time in months, the rain isn't giving me a foreboding, hazy feeling - I think I have finally found peace with all that has happened. This time last year, I was embarking on a road trip around Scotland and back to London on my own with the children - my relationship with my parents had hit rock bottom and I was asked to leave their house, where I'd been staying while my husband managed the renovations on the house. It's been a long and difficult journey to get through the last twelve months but I'm glad to say that I have salvaged my relationship with my parents and I can now call my house a home.

When we embarked on the renovations, one of the key features we planned for was the creation of space that was preserved as child free. So our lounge is generally kept for us to use in the evenings or when we're child free. It becomes our retreat at night once the children have gone to bed, somewhere we relax and escape from the chaos that has taken over the rest of our house.

Talking of escaping, I managed to get away with a friend for a few days in July - it was the first time I'd left the children for a night but if I'm totally honest I was so relaxed I hardly had a chance to miss them. Everyone survived (my parents came and helped out) and I came back feeling like I'd been away for 4 weeks rather than 4 nights. Sadly the feeling hasn't lasted - the day after I returned I was told that James won't be able to start school in September as planned. I have no idea what we're going to do as the LEA has left it too late in the day for us to organise an alternative placement for him. So I am likely to be facing having James at home instead of school for several weeks after the start of term. But more about that in another post....

One of the most stressful problems we're having at the moment is that James has become an escape artist himself - mainly out of his clothes and nappy.. So I've had to invest in dungarees for daytime use and some all-in-one pyjamas that we put on back to front so he can't undress and take his nappy off at night. I had never realised that I could be so creative and resourceful when it comes to solving seemingly impossible problems but I have to stay a step ahead of James at all times. For him, there really is no escape....

New beginnings

2008-06-27T11:19:00.000-07:00

There seem to be so many things happening around me at the moment that I hardly have time to sit back and appreciate them. The last year has been frantic and very challenging but I finally feel there is light at the end of the tunnel.

The new garden is proving to be a haven - James has always loved being outside and a large garden was one of our essential criteria when we moved. Sadly, the previous owners had neglected the garden so whilst we had the space we also had the bindweed, brambles and building material (6 skips worth!) to contend with. Bea learnt to walk on the old lawn, full of dandelions and horribly uneven. James spent most of last summer with his legs covered in scratches from the brambles and unruly roses. So now that it is a safe, relaxing environment I've finally discovered the joys of gardening. Our last flat had a raised level garden the size of a postage stamp and wasn't particularly fun to be in. I did have a short spell of green fingered dabblings the second summer after we moved in (we got married the first summer) and grew quite a lot of seedlings, but the following summer I was pregnant and haven't had a moment since! I am woefully ignorant when it comes to gardening so when our designer said he was leaving us a plot to use with the children I decided it was about time I learnt a bit more. In my usual manner, that has entailed a bit of shopping - although I don't think 2 books and 10 packets of seeds is that bad! I don't know if it's beginners luck or the fact that the soil was well prepared, but so far so good - I sown sweetcorn, peas, carrots, spring onions, radish and rocket in our bed and everything has germinated. The radish are attracting the slugs so I'm off to find some environmentally friendly (and child friendly!) methods to keep them at bay. Tonight we ate our first salad leaves from my troughs and I'll plant some more soon. My friend brought round some cucumber, courgettes, aubergine and chard yesterday but I'm not sure that they'll all survive outside (we don't have a greenhouse) but I'll give them a whirl too. Bea loves to help me and her sunflowers are doing well and she's getting the hang of dead heading - she's a little overenthusiastic at times though, and keeps offering me various leaves she's picked, telling me they're delicious.

With all this growth going on in the garden I've noticed that James is very happy to be outside on the trampoline or in the summer house with us. In fact, he's started requesting that I join him on the trampoline - I suppose it goes some way towards me getting a bit fitter! We've been using "Intensive Interaction" techniques with him for some time now, but recently he has been reacting more positively to it, as if he's suddenly clicked that we're joining him in his activities. He is showing a lot of affection and when my parents were here they commented on his greater level of intereaction and awareness. It has been a long time coming - it's over 2 years since we really noticed his regression and it seems that he is finally beginning to make a little bit of progress. I look to September, when he starts school, with a sense of trepidation and worry - I just hope he doesn't find the change too difficult and upsetting. He has struggled immensely over the last 9 months at nursery, mainly because it was the wrong environment for him, and I am hoping that the smaller class (there will be 5 other children with ASD in his class) and higher level of support will mean he can start building on these foundations.

Another big change in our life is that I am earnestly looking at going back to work - I've been away for over two years now and feel that if I don't give it a go now I'll never get another chance. In medicine there comes a point where you've got so out of touch that you have to virtually retrain and I don't want that to happen. So I've taken the bull by the horns and am planning to start one day a week in the middle of July. So a lot of our time has been spent trying to find suitable childcare for the children - special needs nannies and childminders are few and far between, but there are some out there. It's been quite daunting, inviting people into our house, interviewing them and having to talk about James' difficulties with virtual strangers, but it's one more step towards me getting this part of my life back on track.

Happy Birthday

2008-06-18T12:19:00.000-07:00

It's official, I am now half way to 70! I had a lovely day but somehow it was tinged with sadness, as I remembered my last "big" birthday when I hit 30.

Rewind 5 years and I am 18ish weeks pregnant, feeling my baby kick me, enjoying the blooming and blossoming stage (the nausea and exhaustion was starting to tail off by then!). We were abroad as we had decided to take a 2 week holiday in a deserted part of Cephalonia - we knew our lives were going to change forever in a matter of weeks, but we had no idea how much. I was a realist, and knew that the early years would be hard but I never expected it to be this hard. I guess that in my line of work, you can't ignore the fact that not every pregnancy has a perfect outcome and that even if you have a healthy baby that's no guarantee that you won't encounter problems further down the line, but like most people had never imagined it would happen to me. It's one thing seeing and diagnosing children with autism and other developmental difficulties but quite another to discover that your own child has a life long disabilty. Perhaps it's because of my professional background that I've struggled so much over the last 2 years - I haven't been able to be "innocent" and "uninformed" as everyone has expected me to know the answers. Sadly, with autism there are no certainties and I still don't have the answers. They say that too much knowledge is a bad thing, and I couldn't agree more - perhaps because I have seen the worst case scenarios and the poor outcomes I've wallowed more than most parents. I've talked to parents of older children who have said they were glad that at the time of diagnosis they didn't know how hard the struggle might be - I don't have that, I have seen the struggles, inadequacies and failings of the systems and I have seen both the positive outcomes and the negatives. I feel overwhelmed, surrounded by this sea of knowledge, unable to filter the useful from the inappropriate.

Another reason I've found this year hard is that so many things are happening on a daily basis that make me realise that James was struggling for a few months before I "noticed". The parenthesis are there because I often wonder if I was subconsciously denying the problems, or whether I was so wrapped up in my pregnancy (which was not without its complications) and new baby that I ignored them. Almost every day Bea does something that I know James couldn't do at the same age (and still can't - but that's another discussion altogether). So when my husband sent her in to me with my birthday card and she gave it to me with a big grin on her face as she said "Happy Birthday Mummy" I wept tears. Tears of joy because she looked so earnest and it was so touching and tears of sadness because I remember trying to get James to wish his daddy a happy birthday a couple of weeks after he was two. I shrugged and thought it was a bit much to expect of him. Clearly it wasn't.

Mummy, I want....

2008-06-11T05:46:00.000-07:00

How long have I waited to hear those words? So much about typical human developement can be understood with just that little sentence - the child has recognised the need to address the adult ("mummy") in order to share their desire, they have a sense of self as distinct from their carer ("I") and they understand that the carer doesn't know what they are thinking/feeling/wanting. Without the ability to share your needs and desires, caring for the child can become a guessing game, sometimes hitting the jackpot and other times ending up with a rather frustrating series of incorrect guesses that are rejected. James occasionally shouts out random words (in particular "want water") but we're never sure if he really means it (at the start of his regression, when Bea was a newborn his favourite phrase was "want a wee wee, want a poo poo" which was incredibly frustrating - countless times a day we'd find the potty, undress him, sit him on, find he wouldn't perform, redress him then he'd dirty his nappy 10 minutes later. I found it difficult to deal with to say the least....). We try to filter out what we do and don't respond to, which is especially hard when he finds communication so difficult. It is so tempting to respond to every attempt to communicate, but there are times when I just can't do what he's requesting, or don't actually understand what he wants/needs. As is typical of autistic people, James rarely directs his communication to anyone - it is more obvious now we are in this house rather than our old flat as he will be in the kitchen saying "water" when I am in the playroom.

So it's a bit of a kick in the teeth that the first time I heard "Mummy, I want...." it came out of the mouth of Bea, a day or so after her second birthday. I imagine this is the start of a slippery slope - gone are the days I can meander round the supermarket without the clammer of "Mummy, I want...."! So occasionally there are some benefits to James' difficulties - he has never pestered me for anything!

Not again!

2008-05-31T13:21:00.000-07:00

They say truth is stranger than fiction and I definitely agree. For the second time in her short life Bea has broken a bone. This time it's "just" her wrist (a torus fracture of her radius) but it's going to be harder than her collar bone as she's in plaster. So I'm sitting here debating whether to fork out a small fortune for a waterproof plaster cast cover or to risk improvising with a plastic bag and an elastic band. My husband has pointed out that since I've become obsessed with recycling there aren't many plastic bags in the house so it may have to be a bin liner!

In many ways I was lucky - this time it happened at the end of the day so we haven't had to endure a whole day of screaming and tears. Plus, as it was the weekend my husband was able to take care of James while I rushed to the hospital. There's no way he'd have been able to cope with the waiting area if he'd come along and I don't know if I'd have been able to manage with both children on my own.... She was so brave and let the nurse and radiographers handle her, wiping her tears away with her muslin and whimpering for James. Recently she's developed such a strong attachement to him that at times it's heartbreaking. If he isn't around in the day she'll cry and ask for him and if he is around she chases him around (while he ignores her), desperate for him to play with her. I find that so hard to watch as I worry that one day she'll stop trying. I know as she gets older we'll be able to explain to her that James is autistic and that's why he behaves the way he does, but right now she's not old enough to understand it properly. I do sometimes tell her that James is different and hasn't learnt to use cutlery/ wee on the potty/ not chew his tee shirt but usually it encourages her to copy his behaviour. At least that's a reassuring feature of normal development!

She wasn't too impressed when it dawned on her that the plaster cast was here to stay although now monkey is trussed up to match we're hoping she'll tolerate it a bit more. The plaster will be on for two weeks, which means we'll get it taken off just in time for our annual trip to London Zoo for "Special Children's Day". I guess my plans to take her swimming while James is at nursery are on the back burner for a while....

What a difference a year makes

2008-05-28T05:38:00.001-07:00

This time last year I was sitting amongst a wall of packing boxes wondering if we'd ever see the end of them. We had finally moved from our tiny one and a half bedroom lower ground floor flat in central(ish) London to a three bedroom semi in the suburbs, and I couldn't believe how many boxes we'd filled. Our flat must have been a tardis - the removal men just kept taking more and more and more boxes to the lorry and things seemed to appear out of nowhere! We had been renting a storage unit too (I have a complete inability to get rid of anything and have a dreadful habit of buying things "in advance" and "just in case" - how it's come back to bite me, as I have a garage full of toys that I bought for James that he will never be able to use or be interested in. There's something particularly cruel in that) so when they unloaded the last thing at 10pm on the Friday night I could have cried. The house had been left in a state - the kitchen was filthy, all the "fancy" electric sockets and light sockets had been replaced with basic white plastic ones, the garden was unsafe for the children as it was full of brambles and building materials, the doorbell had been removed, and the fitted wardrobes had vanished (I had clocked that they weren't included in the sale on the fixtures and fittings list, but had visited the house two days before we moved when it had been unoccupied for 3 weeks and they were still there so I had lulled myself into a false sense of security that the previous owner would leave them after all. I mean, the clue's in the name "fitted wardrobes" - I still have no idea what she did with them after removing them, or why she removed them in the first place!). The internal decor had left a lot to be desired when we had viewed but stepping back over the threshold the reality of what we had let ourselves in for became apparent. There wasn't one room that could be left untouched.

So here we are a year later and we now have a "home" rather than a shell. We have managed to do the following:

rewire the house
strip the floorboards and varnish/stain them
strip the wallpaper and then plaster and decorate the master bedroom, Bea's room, playroom and lounge, including replacing skirting boards and picture rail and blocking up a serving hatch between the playroom and lounge
build a virtually fitted wardrobe in the master bedroom
replace the boiler
landscape the garden

There's still plenty to be done, notably James' bedroom and the bathroom, and as with the Forth Road Bridge, it feels as though we're going to get to the end of it all and need to start again but at least we've broken the backbone. The garden was our biggest project, and has only just finished - just in time for all this rain! Apparently they removed over 6 skips full of building materials in the first week.... I am looking forward to sitting in my summer house, admiring the beautiful planting and landscaping and planning my Summer Solstice celebration!

All gone

2008-05-18T11:40:00.000-07:00

Finally, we've done it - when James began chewing his hair in earnest a couple of weeks ago (coinciding with the good weather and us putting him in t shirts) we agreed we were going to have to do something drastic. For the last four years (well, since it was long enough to be classed as "long") we have left James' hair long as it suits him so well. He has lovely blonde highlights that swish and sway when he shakes his head back and forth (one of his many stims!) and he has a pretty obvious plagiocephaly, so keeping his hair longer avoids the "Phil Mitchell" look. But I've seen pictures of trichobezoars (hairballs to you and me!) in medical journals and knowing my luck, James would be one of the rare cases that develop intestinal obstruction and require surgery to remove it! So after a lot of agonising and soul searching we decided to have it cut quite drastically. Ronan was a star, once again, and very patient with James throughout the "procedure". I was virtually in tears watching his locks fall to the ground, wondering if I was doing the right thing. When we walked out, he was barely recognisable to me - he looks much older and more "masculine" (although he has very male features, with his longer cut he was usually referrred to as a "girl" even when in what I'd call "boyish" clothes). I'm still doing a double take when I get him out of bed in the morning. I think he suits it shorter, but we've deliberately left him with a surfer look - it's much easier to look after now and we're not having to spend 10 minutes getting the knots out in the morning. Most importantly, he can't get his hair in his mouth - so he's taken to chewing the front of his t shirts! That one's going to be a bit more difficult to prevent I think....

A week away

2008-05-11T13:44:00.000-07:00

We're having some pretty major work done on our garden at the moment, and that has entailed both doors being open - impossible to manage with James. So I was glad that we'd organised a week away to the back of beyond. As a child we used to spend a week of our holidays in a Forestery Commission log cabin so when I stumbled across their new site I knew I'd found the place for us. We really needed a total escape and it's far easier for us to be in the middle of nowhere with James than in a crowded busy hotel.

I hadn't quite banked on the traffic on the way up - it was Bea who gave us more trouble than James though! He has always loved the sensation of movement and very rarely complains in the car. Bea on the other hand started crying about 20 minutes into the journey and kept going on and off for the next 7 hours. So on her birthday wish list is an in car DVD player - I remember how I used pat myself on the back and feel so smug about how happy James was to sit in the car and that he had no need of such entertainment. Don't feel so smug now though. It's often hard to sort out what is down to James' autism and what is just "normal" though. For instance, he has become pickier and fussier when it comes to eating and I never quite know how far to push it. His reluctance to try different and "new" things is most likely part of his autism, but there are lots of neurotypical 4 year olds who are pretty fussy. But on the other hand you can usually do some bargaining with them to at least get things tasted if not enjoyed (once again, though, this is starting to backfire on me as Bea is now demanding "teeny tiny Pontipine" pieces of every foodstuff - I thought it was a good idea at the time!!!). No amount of bargaining/explaining/begging works with James - occasionally I can almost force a orsel in his mouth but then I find myself feeling uneasy as that isn't really a long term approach or solution.

Overall, the holiday was really positive - James loved being out in the forest (obviously wearing his rucksack with reins) and Bea had a ball too. We had a wonderful day at Flamingoland where he must have had enough sensory stimulation to last most people a lifetime - he was in heaven with all the rocking, spinning, whizzing and water! He even noticed one or two of the animals - although I don't think he was that impressed to see the baby camel being born.....

But now we're back to reality and are exhausted again already. The washing machine has been on overdrive, I dragged the children food shopping yesterday and Special K that has been scattered all over the kitchen. Some things never change........

Locked in (again....)

2008-04-19T07:16:00.001-07:00

Sometimes it feels like there's a disaster waiting to happen around every corner. I feel as though I spend my life leaping from one disaster to the next. I spent most of last night awake worrying about whether I was doing the right thing - my parents are visiting at the moment and we decided to take advantage of the Ikea birthday sale, and planned to leave the house at 6am leaving them to get James and Bea up and breakfasted. My parents have found the last couple of years really tough - like me, their hopes and dreams for James (and myself) have been shattered by his diagnosis and the difficulties we are facing. Luckily, James still has a very strong connection with them - his face lights up when they come to visit (they live over 300 miles away so can only come every couple of months) and he shows them so much affection when they're here. It is still tough for them, though, when they know that they can't play with him in the same way their friends play and interact with their grandchildren. He has no concept of excitement or anticipation, and little interest in toys or gifts, so they are usually stumped for ideas for how to engage with him over and above hugs and food (and sadly, he doesn't enjoy the "usual" childish treats that grandparents enjoy indulging their grandchildren with - ice cream and cake don't wash well with him). But they love him unconditionally which is more important than any number of toys or ice creams.

As David and I drove off, I went through my list of things I had prepared for my parents - clothes, nappies, food, activities and thought I had it all covered. I was a little nervous when queueing as I worked out how long we'd be out of the house. Luckily we had our order all prepared and I was able to bypass most of the queue. Once we had paid, I phoned home to check how things were going - my sixth sense must have been highly tuned as I usually leave my parents to it. Turns out that they'd only just managed to rescue James from his bedroom - he has finally worked out how to slide the lock that is inside his bedroom door and had locked himself in! I have been begging my husband to remove the lock for months now but neither of us thought James could actually reach it plus he has pretty poor motor planning and fine motor co-ordination so I didn't think he'd ever manage it. It took my dad coming up to talk to him to get him interested enough to slide the lock open - he wouldn't have understood anyone's instructions of how to slide the lock open again so it was the lure of his Dede that drove him enough to try to get out of his room. Somehow I guess we'll be spending the afternoon taking the lock off the door (and removing all the other sliding locks around the house), rather than assembling our wardobe!

What animal would you be?

2008-04-15T11:04:00.001-07:00

We've had a rather busy few weeks, with plastering, painting, cupboard building, skirting board and picture rail fitting and general chaos. It's taken its toll on all of us, and something had to give, so for me it was my internet addiction. Perhaps not such a bad thing, as it's meant I've spent more time with my husband and less time staring at the computer screen!

My big "news" is that I am now unemployed - I had been on long term sick leave and childcare problems (plus my fragile state of mind) have made it impossible for me to go back to work, at least in the short term. This means I now have the joyful task of filling in my application for Carers Allowance, which once again brings home to me how much I do for James.

It's the second week of the school holidays and I'm frazzled - I usually complain that the nursery session isn't enough time for me to get anything done/spend time with Bea/have a cup of tea, but it's now that it's not there that I really miss it. Luckily James has had a few sessions at the special needs playscheme, so we weren't in the house while the carpenter was around this week. Last week I had a couple of days to spend with Bea and whilst I loved every minute of our 4 hours together it drove home the reality of how hard I find spending time with both children together. Whenever I take James somewhere new I find I'm constantly on edge as I'm not familiar with the layout, particularly the danger zones. He has absolutely no sense of danger and is like a 14 month old trapped in the body of a 5 year old. He still runs in front of swings (and has been knocked down several times) and is drawn to water and the exit gates. I have a vivid memory of having to hold a rather bemused Bea like a rugby ball (she was around 5 months old at the time) while I dashed to the gates of a local park where some "helpful" man had let James wander through (he'd actually held the gate open for him and let him pass - I was livid). This was pre-diagnosis but it's no better now. Because James couldn't let anyone know he was lost or give his name or any other details I can't let him out of my sight. I did buy some IdentiKids wristbands for him ages ago but he didn't like them on his wrist and chewed through them (and with all the chewing the ink ran so even if they'd stayed on the number wasn't legible!!!). Maybe I'll try them on his ankle next time.... So the thought of taking both children out on my own brings me out in a cold sweat - now that Bea is more active and testing the boundaries I find it impossible to keep both of them safe and occupied. Even at home I can't seem to get it right - if I sit down to do a planned activity with him she wants to join in (and can usually do it more easily than he can - it's both heartbreaking and heartwarming at the same time to see your 4 and a half year old being shown how to roll out play dough by his 22 month old sister....). As soon as Bea comes near him he loses interest and runs away or throws everything off the table or refuses to participate. If I am sitting down to try and do something with Bea, then he'll usually suss out that I'm preoccupied and find something inappropriate to get up to like chewing through loaves of bread still in their packet or pouring water all over the kitchen floor. A friend asked me how I spend my afternoons and we decided that the best way to describe it would be "damage limitation". I wish I had an extra pair of hands so I could keep them both entertained and safe. Which is why I think I'd be an octopus - I'd have enough arms to look after everyone AND I could give myself a pat on the back at the same time!

Every cloud.....

2008-03-22T12:41:00.000-07:00

They say truth is stranger than fiction and I know I couldn't have made up today's events. I think it's a fact of life that most children will sustain an injury that requires a trip to A&E at some point in life, but I always expected that it would be James I'd take first. He has no awareness of danger (his latest trick is to run away from us down the street when we take him out of the car in our drive) and is quite hypotonic (floppy) and so tends to trip and fall a lot. He has a high pain threshold and won't tell us when he's in pain (I can remember an incident when he was less than two when I found his toenail bleeding and hanging off when we were in a park and thinking how brave he was - this was before his formal diagnosis, and is just one of many little incidents that show me there were very subtle clues there before he "declared" his autism). But it seems that despite being the second born, Bea has found yet another "first" to outperform her older sibling - yes, she is the first of my offspring to sustain a broken bone. In fact, she's beaten me - I think my first fracture was when I was about 3, but I hope she doesn't follow in my tracks and continue to break another 10 plus bones. My last fracture was only about 6 months ago - I wish I could say I'd been running to save James from drowning or some such other heroics, but to my shame I was late on the nursery run and tripped over my own foot! Bea's story isn't particularly glamorous either - slipped on the kitchen floor, put her arms out to save her fall and broke her clavicle (collar bone). Considering it's been nearly two years since I last saw a patient, I was quite impressed with myself for identifying the cause of her screaming - even Mini Eggs wouldn't console her. My local A&E were very efficient (I did mention my training which helped bypass at least one doctor, I think) so we were out within 2 hours, having seen the orthopaedic consultant (I think I must be ageing rapidly - he looked far younger than me and I'm a long way off my consultant post!). She is currently tucked up in bed, dosed up on painkillers and looking like a princess - I've put a double duvet under her to cushion her as she's been screaming in pain all day.

It's events like this that really bring home how hard life with James really is. I think I'm a realist and know how much I do but it's so easy to get so involved in living your insular life that you forget how much you're adapting to your situation. There is no way I could have taken James with me to the hospital as he would never have coped there but equally I'd have found it impossible to leave him with anyone. Just as well it was the weekend, although my husband's plans for a morning of DIY were scuppered. Then this afternoon it's dawned on me how hard it will be to take the two of them on the nursery run - it's incredibly painful for Bea to be picked up and put in her car seat, which we need to do four times a morning. I can't ask anyone else to take James to and from nursery either, so I have had to ask my mum to come and visit to help out. Ironically, I have been exploring the possibility of getting the LEA to provide transport one day a week for James so I could go back to work - they've refused on the grounds we live too near (there's one direct bus that goes twice an hour and the times mean that Bea and the nanny would spend more time waiting for the bus/on the bus than at home). This is a rather dramatic way of getting transport though!

James was very "high" today - I am sure he could sense we were upset about Bea and the screaming didn't really help. Plus, he loves being outside and finds being stuck indoors on days like today really frustrating. When he's high he's really hard to engage with, running back and forth continually, spinning round and round, flapping and stimming and he finds it impossible to concentrate on anything. We tried most of our usual "tricks" but he wasn't having any of it. I was very glad when supper time came around as it meant bedtime (and with it a bit of peace) was round the corner. As Bea can't lift her arm, I gave her her glass of water with a straw and did the same for James. For the first time ever, he used the straw to blow through, something we worked on and gave up on last summer. So I brought out a bowl of water and washing up liquid and we spent a magical ten minutes blowing bubbles, splashing, popping, and the odd bit of drinking. So every cloud really does have a silver lining.

Thanking my lucky stars

2008-03-18T15:24:00.000-07:00

There's no denying things are hard at the moment - with all the renovations James has found things very difficult and his behaviour is more and more challenging. He finds change difficult to deal with, but unlike most people with autism, it's the changes in his environment rather than changes in his routine that upset him most. He's starting to calm down again but he is still rather agitated and anxious.

As if I didn't have enough to deal with, I managed to get him booked in for a haircut last week. Haircuts can be very challenging for people with autism - there are so many sensory stimuli going on (hairdryers, combing hair, close touch, snipping sounds, the smell of the shampoo) that they can go into overdrive. The last time James had his hair cut was in December and it took two of us to hold him down. So I've been dreading taking him again. He seems to have developed a lot of sensitivities to things like toothbrushing, hairbrushing and nail clipping - I can't remember the last time he let me cut his toenails and I managed two finger nails over the course of the weekend. He isn't usually aggressive, but he screams, squirms, fights and pushes us as soon as he sees the clippers now. He used to be so compliant that I used to thank my lucky stars that he was so easy going. How wrong I was. But back to the haircut. We did lots of preparation and it seemed to pay off - he was a star for Ronan and I felt my heart swelling with pride as he sat there, quiet as a mouse, eating chocolate biscuits, hair falling in his lap, looking to all intents and purposes totally "normal" (I do hate political correctness at times....). I love his hair long and flowing, but hadn't actually realised how long I'd let it get - put it this way, I can actually see his eyes again and he's not hidden behind a mop of fringe. In fact, both of us have noticed an increase in his eye contact and communication since Friday, so we'll be making sure we have regular cuts from now on.

Most of James' "challenging" behaviours are a result of his sensory needs - he runs in straight lines and circles to stimulate his vestibular system, he chews his sleeves to calm him and stimulate him, he licks things because they excite his olfactory system. But some behaviours are a direct result of his autism - he has an obsession with doors and likes them to be closed, so he will spend a lot of time in the kitchen opening and shutting the cupboards - I often open a cupboard, turn away then turn back to get something out to find it shut again! You have to be fast in our house. A less harmless habit is his fascination with the hob - almost every time I turn it on, he tries to put his hand in the flame. Because he doesn't learn from experience I have to make sure he can't reach. I still have a vivid picture of the horror in my face the first time he touched the flame - we were at a friend's house and I stood there paralysed with horror. Until recently I could get away with only using the back burners, but he is so tall that he is soon going to be able to reach. I never thought I'd be continuing to babyproof my house now he's four. Another frustrating behaviour is his dislike of things hanging over things - he can't bear coats of jumpers over the back of chairs or over the bannister. At least it helps ensure I'm a bit tidier I suppose....

These behaviours, whilst frustrating, are the nearest to communication James gets (although he did say "tired" today whilst in the bath - he looked it too!). When he throws things off the chair, I guess he's trying to tell me he needs order and less clutter in his life. If only he understood the same goes for me - I feel like I spend all the time I could spend decluttering tidying up the mess he's made with the clutter! Every day, I thank my lucky stars that his behaviour isn't even more challenging - whilst I long for him to hug me and let me hug him, I don't think I could deal with him being physically aggressive on a regular basis.

On a totally different note, I am sitting here thanking my lucky stars that there are still some decent honest people around - I get so jaded with the world at times I find it difficult to believe. Bea and I squeezed in a quick coffee this morning (we have been spending a lot of time in DIY shops trying to choose paint colours - not an easy task for someone as indecisive as me, I can barely choose what clothes to wear let alone what colour may calm and relax me in my bedroom). As usual, she got her hands on my handbag and took some bits and bobs out - I thought I'd retrieved it all, but I ended up leaving my purse on the floor. I was giving myself a pat on the back for being early to pick James up from nursery when I realised it was missing - so not only did I end up being late, but I was flustered and tearful when I arrived. I was catastrophising as usual, and was imagining myself trekking to the shops and then the police station with both children in tow - not a mean feat, I can tell you. Luckily I only needed to vist the coffee shop and they had kept it safe for me. So my belief in humanity is reinstated and I will continue to thank my lucky stars.

On edge

2008-03-11T15:56:00.000-07:00

That's me. Always on edge, worried about what James is going to do next and how I'm going to manage. But also, I'm on the edge of James - sometimes I feel so close to him, as if he's invited me to enter his world and really connect with him but so often I'm not allowed quite close enough. As if I am watching through glass, disconnected from reality and distant. Perhaps that's how he feels? The more I try and get through to him the more moments we share with laughter and connection but they're only fleeting and it breaks my heart more than I ever imagined possible. Sometimes I wonder if it would be easier if he was totally disengaged from me, because I wouldn't set myself up to fall down again. And when I fall, I fall hard. My spirit feels broken, my whole reason for being drains from me and I can hardly pick myself up. I have never dealt with rejection very well, and to experience it at this intensity and frequency takes its toll. When I watch James pushing me roughly aside, screaming "no!" forcefully, as I try and offer him a cup of water when he is coughing and crying at night, I just wish I knew what to do, how to handle it, how to stop myself crying and feeling like I am failing him. I wish that autism had never reared its head, and at the same time I find myself wishing that we hadn't seen so much "normality" in James. This time two years ago he was no different from his peers - we enjoyed reading books, singing nursery rhymes and making biscuits together. I was full of thoughts of his future and our future as a family. Fast forward two years and I'm still full of thoughts of his future and our future as a family but those thoughts are no longer full of anticipation, hope and aspirations. Instaed I am full of fear, uncertainty, worry, sadness and grief. For in many ways we have "lost" our son. I don't recognise him in videos or pictures - they are like the memories of long lost relatives, stored to help us remember. I watch them with tears running down my face, just as a mother would mourn her child. Only I still have James. He is still here, he still needs me more than anyone has ever needed me and I sit here, on the edge, wating for the next time he invites me to leave the edge and enter his world.

Reduce, reuse, recycle

2008-03-07T12:27:00.000-08:00

We've had a pretty hectic week although I haven't really "done" anything... Next week is going to be a challenge as we are having two bedrooms replastered so have been spending all our free time trying to sort out the deritus that is taking over our bedroom. I admit it, I'm a hoarder, always have been and always will be. But I've decided to take a hold of myself and tackle it head on. So I've been clearing out my old toileteries, the childrens clothes, Christmas decorations etc etc etc. I have given a lot to charity, but will also sell some through ebay and I'm hoping to find a local NCT sale to sell some of the childrens clothes. Call me a sentimental old fool, but I find sorting through their clothes brings back all sorts of memories - I look at Bea's old clothes and find myself shocked at how small she used to be, and I look at some of James' old clothes and think of him wearing them "before we knew". So it's been a hard few days, as I'd find another tee shirt that reminded me of the happy go lucky days when our future looked rosy and bright - I know that it's not all doom and gloom for us, but it's a path I know is going to be full of bumps and dangers.

On the subject of clothes (sort of!) I was complaining about white tee shirts the other night. We have to buy quite a lot of clothes for James, first of all because he is always getting himself filthy or wet or both (he comes home from nursery in a different set of clothes EVERY day) and second of all because he chews the sleeves of his clothes and makes holes in them, to the point that he can't wear them any more. The chewing is a symptom of his sensory integration difficulties - he finds it calming, organising and reassuring. I, on the other hand, find it intensely frustrating as there are only so many tee shirts and jumpers in his wardrobe! There is a distinctive crispy feeling to the cuffs of his cardigans and jumpers as a result (the enzymes in saliva start to break the cotton down - nice!) and when the holes get too obvious I bin them. So nowadays it's bye bye Boden beauties and hello supermarket specials - these usually come in packs of 3 or 4 for £5 and my conscience is heavy at the thought of all the children being employed in sweatshops to keep James clothed. The most frustrating thing is that there's always one white/cream/pale yellow tee shirt in the pack. Now, perhaps it's just me, but there's no way I'm putting James in a white tee shirt. I've seen the state of his vests and they're not strictly exposed to the elements. So I have piles of unworn unloved white tees that end up in the charity shop bag, which alleviates my guilt a little bit. So when someone suggested dyeing them I felt like I'd hit the jackpot - it's been a long time since I did any tie dyeing but my hippy tendancies have resurfaced and I'm about to buy shares in Dylon. I do try and find "distinctive" clothes for James (although we have never actually lost him, if he is easy to spot in bright yellow or red gingham then it makes for a more relaxed trip wherever we're going) so dye is the way forward from now. James has a great selection of chocolate brown tee shirts now and Bea even got some tie dyed tights out of my experiment. For summer I'll be going for sunflower yellow I think!

I've also been thinking about what to do with all the clothes that I have to throw away - I usually take them to the fabric recycling bank, but then I came across a lovely pattern in one of my crochet books which used strips of rag. So one day I may make myself a rag rug from James' half chewed tee shirts - maybe a useful reminder of how he is now.

Baby steps

2008-03-03T11:11:00.000-08:00

For me, one of the challenges of living with James is that nothing happens fast - at four most children are making massive developmental steps forward, preparing for the start of school (if they live in the UK at least - there's a whole debate about whether we should be delaying school starting age, fuelled by this latest research that shows that children from the Scandinavian countries, where they start school at around 7 or 8, actually do better than those educated in the UK). Their conversations take on real meaning and you can begin to rationalise with them (although they are often not rational beings - only just out of toddlerhood and still prone to meltdowns, tantrums and tears). They have a sense of self and are beginning to develop a sense of justice ("that's not fair" seems to be a popular phrase among James' peers at the moment!). In comparison, James is still like a toddler, having little awareness of anyone other than himself, no awareness of danger, barely communicating his needs, still wearing nappies, easily distractable and still needing fed. But he's a toddler in a four year old's body - he can reach the back ring of the hob, he can unlock the front door, he can unscrew the wine bottle, he can open all the cupboards that don't have child locks, he can climb on the table to reach things, he can scale bookcases - you get the picture! I have to be far more vigilant about him and what he's up to than I am about Bea. It's hard work, but someone's got to do it. So I celebrate every single baby step forward we take and today we had two. I'm opening a bottle of wine after I write this!

Like many autistic children, James has a range of foods he will eat and a range he won't touch. But this wasn't always the case - James was a dream to wean, eating anything and everything (except peas - he could spy one a mile off and spat them out in disgust). He has always loved fruit in all forms and ate vegetables with gusto. I was so proud that my approach to weaning him (rather slap happy and disorganised) had worked so well - there were only two things he refused to touch, ice cream and sweets!!! What mother wouldn't pat herself on the back? Imagine my horror when I discovered, about 5 months after we had started the ball rolling towards his diagnosis, that my easy going child had actually stealthily started refusing every single vegetable. He had systematically rejected them over a number of months and I'd hardly noticed as I'd been so preoccupied with getting him and us the help we needed. Luckily this "fussiness" never extended to the same extent to fruit, so I know he gets his five a day regardless. I have never really pandered to him - I still cook and serve him vegetables in all sorts of different forms, and nothing is ever off the list. I always put a few of whatever vegetables I've cooked for the rest of us on his plate, and accept that I'll probably throw them away, but you never know.... As if to prove me right, today I had cooked a pasta dish with chicken, peas and pancetta. James usually eats this by picking out all the pancetta (his favourite bit - I think the saltiness appeals to his tastebuds), then eating some pasta and then eating some chicken, with a bit of encouragement. Today he surprised me by reaching over into my bowl and picking out two half peas. They had popped out of their skins and he just popped them straight in his mouth, none of his usual inspecting, considering and touching them to his lips. So I popped another one out of its casing and passed it to him. Again, he ate it. So I did it again, and it was eaten without hesitation. Then I gave him one with its skin still on - this was the big test as the skin changes the texture and texture is very important for people with autism. Well, to my surprise, it was accepted as were another couple of dozen peas. It may be a handful of peas to you, but for me it feels like a breakthrough - he'll probably reject peas again in a month or two but for now at least I can get one vegetable down him!

I remember the day I brought Bea home from hospital. James had visited us, but had been more interested in turning the taps on and off (I had felt a degree of unease about this - almost every autistic child I had seen in my clinics had had a fascination with hospital taps, but all the midwifery staff said every new sibling was the same....). We had made a fuss of James as all the "experts" had suggested but he wasn't interested in us OR the baby. We didn't take too much notice and just let things be. But there was something rather peculiar in his reaction when Bea arrived home - he just didn't pay her ANY attention. He would turn away from her if we tried to get some interaction between them and when we put her in the bath with him he did a 180 degree turnaround. He cast her occasional sideways glances (using his peripheral vision - a phenomenon seen frequently in people with autism), usually accompanied by a look of disdain. If someone asked him who was in the buggy or what his sister was called he would reply with her name and we'd both smile, proudly, but that was the extent of his interest in her. He didn't even respond negatively to her presence - I think the first time he actually intentionally hurt her to get attention was when she was at least 6 months old. People used to placate me, saying that babies are boring for toddlers and he'd get more interested in her when she could sit up/play with him/began stealing his toys/started to walk but to this day he remains cold and unconnected. Almost daily it breaks my heart to see my doting 21 month old following her big brother like a shadow, desperate for his attention. The occasional interaction she gets with him is almost always instigated by an adult - I can ask him to kiss or hug her and he sometimes does as asked. For a while I've been trying to get the two of the them to hold hands - usually met with enthusiasm from Bea but never from James. Today we took a baby step - well, actually we took about 200 steps with the two of them hand in hand. I swelled with pride and tears welled in my eyes as we walked along the pavement, my two children hand in hand in front of me looking to all intents and purposes like two loving, sharing siblings. A moment of normality among a lot of difficult times.

Stronger together

2008-03-02T08:49:00.001-08:00

First of all, happy Mother's Day to all the mummies reading this. I am having a relaxing day, spending time with Bea and my friends from Slingmeet while James spends the day with his daddy. We seem to spend a lot of the weekend doing this seperate parenting thing - not what I expected when I got my first positive pregnancy test on Mother's Day five years ago, but sometimes things happen that you didn't plan for and didn't expect and certainly never wanted.

I spent yesterday in town at a conference run by the South East Regional branch of the National Autistic Society. I came home exhausted but exhilerated. I have attended a LOT of conferences in my time, and I can honestly say that this is the first time that I have literally hung on every word the speakers said. All the issues raised were so pertinent and it was an opportunity to learn about what is going on out there and also to network and meet other parents. One theme that ran through the conference was that in tackling autism, education, respite, support, research, funding and a myriad of other issues that we face, we are stronger together. The NAS is the voice of families and people with ASDs. If they are to be able to have any political kudos then they have to listen to the members' voices and present our needs to the people who hold the purse strings, the budget planners in the Local Authorities and the policy makers in Westminster.

I learnt a lot about the current campaigns the NAS is championing and urge you to click on the following link and help not only me and my family, but the thousands of other families affected by autism. The "I exist" campaign focusses on the plight of adults with autsitic spectrum disorders. A forgotten and neglected tribe, they have significant care needs which are rarely met. I cried when I first read the statistic that 92% of parents with an autisitc son or daughter worry about the future for their child once they are dead - I often worry about how James will cope without us, and the affect this will have on Bea if she is his only relative and has to care for him. How many other mothers of four year olds can say they have these thoughts on a daily basis?

Another presentation discussed the recently formed Autism Education Trust, which will focus on providing support within education for children with autsim. This will be across all educational settings and will include Early Years provision. This is an issue very close to my heart at the moment as I am struggling to find James an appropriate school placement for September. In all honesty, I need to find him an appropriate placement right now as he is struggling at nursery, mainly due to the environment. I am hitting a brick wall when it comes to moving him as there are no specialist placements available, even though his nursery have admitted that they are unable to meet his needs. This week I will be writing some stern letters to the LEA and my MP to speed up the process - I have been waiting over 3 months for a finalised statement following our review in November. If this conference has shown me one thing, it is that unless I start to make this a political issue rather than a personal one, nobody will listen. I will not take no for an answer and I will get James in a school that is right for him.

Hopefully my quest to educate James won't be as difficult as Anna Kennedy's - she had so much difficulty finding appropriate settings for their two sons that she ended up setting up a school herself. Hillingdon Manor School is actually one of the schools we are considering, and James may end up there if they have any places in the next academic year, so it was inspiring to hear her talk of the effort involved in this endeavour. Her book, Not Stupid is all about her experience and I have added it to my Amazon order.

So this weekend has reminded me of my voice - both as an advocate on an individual level for my son, but also as part of the NAS, a national voice for those of us that live with autistic spectrum disorders. We are always stronger together.

Boing, boing, boing

2008-02-29T11:10:00.001-08:00

Have you guessed what arrived at our house this week? Yes, it's an enormous 8 foot trampoline which I bought from Outdoor Toys Direct. My brother gave the children some money for Christmas and we thought a trampoline will serve us well for years to come. I was very impressed with the prompt delivery and my father was able to errect the trampoline and enclosure in less than two hours (he did have some help, or rather, hinderance, from Bea!). We're going to be very popular with our friends now - I can see us holding lots of barbeques this summer.

When we moved to this house in May last year, we bought James a small trampoline from Toys r Us. At 3 and a half, James had finally gained enough control of his leg muscles to be able to jump and we knew he'd love having a toy that he was allowed to jump on (as opposed to being told off for jumping on the bed or sofa). I had no idea that less than a year later he'd have outgrown it and be ready for a garden hogging contraption! But we moved to a larger house with a family garden specifically to be able to enjoy it, and somehow I can see James spending most of his free time outside bouncing - perhaps we should change his nickname to "Tigger".

Seeing him yesterday bouncing for over 2 hours non stop reminded me of Nick Hornby's introduction to Charlotte Moore's "George and Sam" where he describes his autistic son, Danny, trampolining naked at midnight. If James ever learns that he can get out of his bedroom when he wakes at 1am, then I imagine we'll find him outside, jumping on his trampoline.

I remember when I first read that introduction - it was a damp, cold September day and I'd phoned my health visitor to ask her to come and see me as I was concerned about James' behaviour. From her response, I could tell she thought he was acting up and being demanding as I had a new baby to look after and I didn't correct her. As long as she was coming to see us, I would be able to talk about his difficulties. James had seemed to be developing completely normally - there was certainly no difference between him and his same age peers when they all had their second birthdays - and with my professional hat on I had no concerns at age 2 years 4 months. After a rather stormy May (I was admitted to hospital at 37 weeks pregnant and spent 10 days as an inpatient) Bea was born and we started to try and settle down to life as four. As we became more and more concerned about James' behaviour I was placated by the usual comments "oh, he's just regressing because of the baby" "he's doing that because that's what the baby is doing""oh, he's being a typcial, lazy boy" but literally overnight he had stopped talking with us (preferring to repeat chunks of books over and over again to himself - which turns out to be "delayed echolalia" and a form of self stimulating and self soothing behaviour). I spent most of the summer watching and piecing together his behaviour - I had seen so much of it in my clinic that by the time I phoned my health visitor I knew he was autistic. But somehow until I made that phone call I hadn't wanted to face it head on. I wasn't denying it (I discussed the possibility with paediatric colleagues in July), I just didn't want to face the harsh reality that the diagnosis brings with it. So after that phone call I headed to the library to pick up some books. Charlotte Moore's was one of a handful of books on the shelf and I picked it up, started reading the introduction and promptly burst into tears.

Since that cold, September morning I have shed a lot of tears in a lot of places, but seeing James bouncing away, hearing the joy in his laughter, knowing I have found something that he loves to do, makes my heartbreak a little easier to bear and I smile proudly at my boucy boy. Boing, boing, boing.

Hooked

2008-02-28T06:41:00.000-08:00

We've had a busy couple of days so I haven't had a chance to update and fill in all our news. In the grand scheme of things, not much has been happening, but I am about to embark on a serious declutter of our house having received a rather large shipment of plastic boxes from here. I have promised my husband that I will tackle our bedroom today/this evening so had better get a move on....

I have another confession - I'm an addict. Less than a week ago I finally cracked how to crochet and ever since I've hardly stopped. I love how I can fling my project in my handbag without having to worry about the stitches slipping off the needles, unlike in knitting. I love how there's no "rules" and how quickly your project grows. I am planning to make all my presents this year even though that means I'd better start now. My husband thinks I'm going mad, especially as new yarn seems to arrive every three days or so. My latest purchase was some Rowan ribbon twist to make a rug for our lounge. I popped into our local charity shops on Tuesday and was able to buy a vintage 1960s crochet book - complete with colour plates of funky dresses and bags.

On Tuesday I went to my first knitting meet! It's an idea that started in the USA, under the title "Stitch 'n Bitch" and I organised a local meeting for other interested knitters. We went to a local pub and sat chatting and knitting (or stitching and bitching I guess!!!). There were only 4 of us this time, but I hadn't publicised it locally (in case it was a disaster) and I think we'll do it again. We got a lot of comments and several men wanted us to teach them - I've told them to look out for us at the next meet and join us! We'll see if it takes off. I'd really like to be involved in organising something like this - I enjoy teaching people and would love to spread the love of the craft.

If my knitting and crochet hobby is an addiction, well I guess there's worse things I could be doing with my time. Our lives are so full of challenges, worries, misery and stress that I need a creative outlet to express myself. I don't like having idle hands - if I am concentrating on my crafting then I'm less likely to be fretting over the latest problem we're having in nursery/ with the LEA/ with James' behaviour. It's important to have a way to let go and relax.

Pay it Forward

2008-02-25T12:06:00.000-08:00

Whilst trawling my various internet forums over the weekend (yes, I'm addicted and it's not healthy, but I have fun!) I stumbled across a forum on Ravelry called "Pay it Forward". I was intrigued so entered and have found a lovely forum based on a sort of variation of a chain letter. The premise is that you sign up to receive a handmade gift from someone through their blog and in turn you offer to send a gift to the first three people to respond to your invitation on your own blog. So unlike a chain letter, you're not expecting to receive half a million pounds, or be in the Guinness Book of Records - just joining in with a really thoughtful community. So I've signed up and will be making a gift for the first three people to sign up here! The "blurb" on the forum is below:

Let me tell you about it, these are the instructions: "It’s the Pay It Forward Exchange. It’s based of the concept of the movie “Pay it Forward” where acts or deeds of kindness are done without expecting something in return, just passing it on, with hope that the recipients of the acts of kindness are passed on. So here’s how it works. I will make and send a handmade gift to the first 3 people who leave a comment to this post on my blog requesting to join this PIF exchange. I do not know what that gift will be yet, and it won’t be sent this month, probably not next month, but it will be sent (within 6 months) and that’s a promise! What YOU have to do in return, then, is pay it forward by making the same promise on your blog.
I will now Pay It Forward to you THREE, I wonder who you will be?! Please, be a PIF! You will enjoy it just as much as we do!"
And, remember...you have 6 months to get your gifts done! Come on, you know you would love to be one of my angels. Then, one day, but you don't know when....you will get a gift that I have made especially for YOU!
Please remember, you don't have to knit or crochet to participate, anyone who can make a nice handmade gift is welcome to join :)

Apart from offering to make gifts for other people, it's been a day of giving for me. This morning a friend from another online forum, Damsels, drove over to see me. She has just found out she is expecting twins and I offered her my (virtually unused) double buggy. I had been given the buggy to product test two years ago and had only used it once (James has always been very happy to walk everywhere so I had no need for a double, plus I tended to wear Bea in a sling from an early age so hardly used a buggy at all) so I hope she gets lots of use out of it. Bea enjoyed playing with her 2 year old daughter - it's so nice to see Bea making efforts to interact with other children, as she gets no interaction from her brother.

The air is far from clear between me and my husband - I'm going to turn the computer off now and see if we can talk properly.

What a weekend

2008-02-24T11:23:00.000-08:00

I love the weekends as I can slow my pace down, kick back a bit, enjoy James without the pressures of having to get him to and from nursery, have a bit of time to myself and basically try and live. My life is usually pretty challenging, but sometimes things get on top of me and are too much. This weekend has had it's share of ups and downs and I'll be glad when I get to sleep tonight and wake tomorrow to a new day and a new week.

Two weeks ago my husband took James to his weekly swimming lesson. It was only the second time he had taken him swimming and I made a nonchalant comment about James never pooing during a lesson. Of course, I jinxed them and poor David had to deal with a rather distressed little boy and a lot of poo. Everywhere. Luckily it didn't actually get in the pool or he'd have had to contend with the embarrassment of everyone being hauled out of the pool and the pool being drained for decontamination. So it wasn't really a surprise that when I offered to take James swimming this morning he breathed a sigh of relief and sent me on my merry way. I couldn't understand why James was refusing to try to jump in the pool and was about to prise him off me and sit him down to drop himself in from the side when his teacher realised it had happened again. Luckily I was a little better prepared than David had been and we coped pretty admirably. I had a chat with his teacher and she thinks it may be because he is scared of jumping in (he clings to me and really doesn't want to go in) so we will hold off getting him out from now on. I just hope it hasn't become a new "habit" - when autistic children develop a specific routine in certain situations it can be very difficult to break them, even when the behaviours result in something unpleasant for them.

After I'd cleaned and showered and dressed James I took him to the park behind the pool. I was really pleased at how willing James was to try some of the more difficult climbing apparatus. He is quite fearful of heights and has visual processing problems (part of his difficulties with sensory processing), so finds this sort of activity very challenging. He was happy to have a go at climbing up and down the rope assisted wall, and used the scramble net really well. It has taken us a long time, but he even went down the slide of his own accord!

We met up with Bea and my husband and went to ASK pizza for lunch. I was really impressed with the service and attention we received and the children really enjoyed their lunch and were very well behaved. The children's menu was impressive to say the least - James and Bea shared a menu between them and there was more than enough to fill them both up. I was highly impressed that the staff were thoughtful enough to bring them each a plate of pasta - usually we are presented with one dish between the two of them. James isn't a big fan of pizza but he loves pasta so we went for the polpette (mini meatballs) which were devoured. I was glad he ate happily as he refuses to eat pasta with a sauce at nursery. Bea was delighted with the banana split - she has a bit of a penchant for ice cream! Just like Jack Sprat and his wife, Bea ate the ice cream and James ate the banana, and the dish was licked clean.

Our afternoon has been less blissful - the children have been quite active and my husband has been searching for his credit cards which he has managed to misplace. Of course, this is somehow my fault and we've ended up having a rather heated row and have both said some pretty unpleasant things. In addition, Bea managed to hit her mouth on the corner of our futon and was covered in blood - I thought she was auditioning for a part in Dracula.... I'm sure my husband and I will kiss and make up later but right now I'm the one spitting blood......

The man called U.N.C.L.E

2008-02-23T12:43:00.000-08:00

I realised this morning that I hadn't even mentioned that my brother had come to stay this week. It has been over three years since he last stayed with us, although I have been back to stay with my parents many times since then. When he last visited us, I had an 18 month old happy, active, chatty toddler who doted on his uncle and showed no signs of autism. How much has changed in three short years....

James has always been quick to seek out contact with male carers - he used to run up to men in the park, pointing to himself, saying "James, me James, me Jamie!" and look straight into their eyes. Many of my tube journeys were spent hiding my face as James sought out eye contact with men who were trying to mind their own business! If it was a particularly good looking man, I'd flash him my best smile but more often than not it was some rather unkempt, old man with several bags full of goodness knows what. Often there would be delighted comments on how charming he was and how happy he seemed. Nowadays I still get comments on his looks but more often than not I can feel people looking and wondering why he doesn't talk to them, why he's wearing a backpack with reins, why he's screeching and tsking to himself (these are his stims which help to calm him). If they start up a conversation I am usually quite open about his autism but it's not always appropriate to talk about it. Anyway, I digress. The point I was trying to make is that he has developed a strong relationship with all the male members of our family - my brother and both of his grandfathers. He is always pleased to see my mother but his face lights up when he sees my father. So you can imagine how excited he was to see my brother.

Having an extra pair of hands around in the daytime during half term was a godsend. I was able to relax a lot and Jason really bonded with both children. The last time he saw us was in August, and Bea was only just learning to walk and had a handful of words - he was most taken by the chatty, jumping bean she's become. As for James, he couldn't get enough of his favourite uncle and they had plenty of fun running round the garden, playing tickling games, doing jigsaws and basically just hanging out together. We took the children to Cassiobury Park to the lovely playground there and to ChaChaCha, a borough supported cafe in the grounds. I think Jason found ChaChaCha a bit overwhelming - for the first half hour he was the only male in the packed cafe, and the noise was a bit much for him. He has told me that the last few days have been exhausting and fun but have put him off having children himself - I hope that he rethinks this as he will make an excellent father (don't tell him I said that - it's an unwritten rule that we never compliment each other in our family).

Not only did he help me out during the day, but he and David have managed to paint the playroom! Yay! We just did a quick two coat job with the Dulux Endurance range (we have developed a bit of a thing for Farrow and Ball paint but I didn't think it would stand up to the (mal)treatment it would get in the playroom) and the room looks so different now. It is bright and light and actually quite pleasant to sit in. I know we'd never have got round to it without the help from Jason, so let's hear it for the best uncle I know.

Love yourself

2008-02-22T11:28:00.000-08:00

Making time for myself is something I've never really been that good at doing. When I was a junior doctor my life revolved around two things - work and sleep! If I got to sit down and watch a film then that was a huge plus. Socialising was integral to work - I was living in hospital accomodation and my friends were my colleagues so nights down the pub were an extension of our working day. I tried to keep up with my hobbies - I took singing lessons and sung in the hospital choir, but it's quite hard to practice singing when your neighbours are asleep after a night shift. My next few jobs involved long commutes so I hardly had time for any non work activities and then I started revising for exams. I finally passed my membership exam in 2001 but kept myself busy organising a wedding! It wasn't until I was pregnant and looking for simple, colourful knitted garments for the baby I was expecting that I took up knitting. The sea of pinks and blues was what spurred me on - we had decided not to find out the sex of the baby and so I was looking for gender neutral colours (browns, greens, beige) and all I could find was white or cream. Oh, and a few bits in yellow but I'd spent too many days on neonatal units sniggering about jaundiced babies dressed in yellow with fellow colleagues to inflict that on my offspring....

Armed with a few Debbie Bliss pattern books and a copy of Stitch 'n Bitch (the definitive knitting self help guide!) I set about teaching myself to knit. My mum had tried to teach me when I was at school so I had the very basics, but her patience (and mine, in all fairness) was not sufficient to keep me on track and I never grasped the important stuff like casting on and knitting two stitches together. Fast forward 5 years and I'm pretty confident, if not particulalry adventurous. My love of knitting has taken me to a rather fun website called Ravelry, which is a set of forums dedicated to all things yarn based. I have been trying to learn to crochet for about a year now, but last night I cracked it - Vic and I have been talking about her teaching me to crochet for ages now and we finally got together for a teaching session at her house yesterday. I am now inspired to make Bea a blanket for her bed from granny squares - if you don't know what I'm talking about look at this blog! Vic is a very bad influence on my yarn buying habit - and soon she's going to be a constant source of good quality yarn. Have a look at her blog and see what she's up to....

All this knitting and crocheting doesn't leave me a lot of time for much else but I have vowed to start making more effort to look after myself. I am going to enrol in a local pilates class and try and find a decent local swimming pool. Last Friday I went to a fundraising evening for our local ADHD support group and the remit was that everyone had two taster beauty or alternative treatments. I had a mini reflexology treatment and it was so wonderful I've vowed to go again soon. Next time I sound a bit harrassed and exhausted remind me to love myself.

When you least expect it....

2008-02-21T06:39:00.000-08:00

I am often offered help and advice about autism and its causes and how I ought to manage James and what I should do to help myself and why it has happened to us and that there is this amazing new diet that cures autism and - well, you get the picture. I have learned to take it all with a pinch of salt, decide which pieces of information I want to filter in and then set off researching on my own. As soon as you have children it seems that it is an open invitation to people to start commenting on your parenting skills and giving you advice that you haven't even asked for. A recent post on a forum I frequent linked to these rather amusing baby t shirts, which I would love if the slogan could be altered to "please don't give my parents unsolicited advice - I'm autistic. Google it". Apparently the National Autistic Society used to sell a slogan t shirt that said "I'm not naughty, I'm autistic". I have toyed with the idea but whilst I have no problem labeling James as autistic I don't feel comfortable labelling his behaviour as "naughty". Even though his challenging behaviour is all a result of his autism very little of it is truly "naughty" and I'm not sure the slogan will help. Will people just think I'm making excuses for unacceptable behaviour and still proffer me advice and criticism?

It's very rare that I get any positive affirmation of my ability to deal with James and his difficulties. I do have a very close support group at my local branch of the National Autistic Society and occasionally turn up to our weekly coffee mornings to be told I've been "spotted" somewhere and how well we were all doing. Days like that make my week. Perhaps the most meaningful encounters are those times when an innocent bystander with no knowledge or understanding has made a positive comment about my children - often at the supermarket the assistants tell me how well behaved they are or how attractive they are.

Yesterday I was lucky to have a few hours to myself - James was at the special needs playscheme at Kids Can Achieve, a local charity that was founded by parents of children with special needs to provide the sort of support and assistance they needed. Bea was with Charlie. So I took myself off for some retail therapy and peace and quiet. I was standing looking at chopping boards when I heard a voice I recognised - you know the type of voice that is unforgetable and makes you sit up as soon as you hear it, well that's what I heard. It didn't take me long to place the voice and it was a colleague from my most recent workplace, before I had Beatrix. We had a long chat about life and James - she was not aware of his diagnosis as it only became apparent after I went on maternity leave. I discussed my concerns about going back to work and how it would be difficult to remain entirely detached when seeing parents and their children and breaking the news of diagnosis to them when I am still coming to terms with it myself. I even talked about my idea for a new role for myself, as a family advocate around the time of diagnosis and she thought it would be an excellent idea. I am now going to persue this as a realistic possibility. I doubt I would be able to get NHS funding for this sort of role, but I am sure there must be charitable organisations such as Contact a Family who may have a caseload I could take on. So watch this space....

After I had picked James up I took him for a drive (he loves the motion of the car) and just as I was about to head home he fell asleep. I took my opportunity and pulled over and turned the radio on - to my surprise I found myself listening to a Radio 4 interview with Dame Stephanie Shirley, an amazing woman who has dedicated her charitable work to funding research into autism and has founded a specialist school for children with autism, Prior's Court. My husband is keen for us to get involved in research, particularly if it points to the causes of autism, so I will be researching how to take that forward. Perhaps another new calling for me....

An angel at my table...

2008-02-19T11:40:00.000-08:00

Half term. A phrase that makes the blood of many mums run cold. Especially at this time of year when it's still too cold to depend on being outside and the purse strings are still tight after Christmas. Add an autistic child who needs constant supervision into the equation and you can imagine how I feel in the run up to half term. The last year has had its fair share of horrors and pitfalls and most of them revolved around holidays. Looking after James is a 24 hour job - I usually wake up in the morning having dreamt about him or an incident that involved him. Our nights are often broken with a wide awake child at 3am or our evenings are taken up calming him down enough to get him to sleep before 10pm. And then there's all the extra housework and cleaning he creates (on a good day he has one change of clothes, today it was three...) So I count my blessings that we found Charlie. She is an angel who has stumbled across our chaos and somehow blinkered her eyes to the mess and helped us in our hour of need. She looks after Bea every Friday and helps me over the holidays. I honestly don't know if I could manage a whole week of half term without her help.

Most mothers of two or more know what it's like to juggle their children, working out whose need is greater and somehow managing to meet the needs of everyone. I remember finding my first weeks after James was born so very difficult and challenging, yet when Bea was born I didn't have time to wallow in the difficulties of a newborn as I had a full blooded toddler to deal with. What I didn't realise was that Bea was always going to have to be second best if I was on my own with them. James has no awareness of danger, no understanding of the world around him and his behaviour is often dangerous and inappropriate. It has now got to the point where I cannot go out with the two of them on my own, unless our trip involves a trolley with two seats (ie Tesco, Ikea and Costco!!!). My idea of hell is taking the two of them to a soft play venue but even just venturing to the local park is challenging. I don't do it any more, although we do have a reasonably big garden so they can both run off a bit of steam there.

But today I had Charlie with me so I took the opportunity to take the children to Ruislip Lido. Charlie walked from the car with James and Bea insisted on walking round the lake too. We were the slower party and by the time we reached the "beach" and children's play area Charlie looked a little harrassed - James had run straight to the water as soon as she took his safety rucksack off and was soaking wet (he had sat down in about 6 inches of water). Luckily, it was a lovely sunny day and he soon dried off and enjoyed the roundabout and swings. I hadn't realised that the train would be running so we will come back soon to use the railway.

It's funny how despite having extra help today I feel more tired than usual. Even with another pair of hands around it's still exhausting having a full week with no let up - roll on next week!

Painting with Pesto...

2008-02-18T16:13:00.000-08:00

You just know what I'm going to write don't you? The title's a bit of a giveaway....

When James started nursery in September I remember feeling the tinge of sadness that most mummies feel on the first day they send their child to school or nursery. Except mine was tinged with a lot of worries and concerns that most mummies don't have to contend with - how will they get him to sit down, who will understand him when he does speak, will he let his keyworker change his nappy, how many changes of clothes should I send him with. This last question still challenges me - I find that however many items I send him in with, he comes home with the same number of dirty items. My washing basket is constantly overflowing - at this rate we'll need a new machine before this one reaches statutory school age.... My feelings of sadness were also mixed with guilt - no matter how much time I'm able to give James, it's always going to be combined with the pressures of running a household and looking after both him and his sister. In the months before he started nursery I felt I was unable to give him the amount of time he needed - he needs constant one to one attention during his waking hours and this is exhausting at the best of times. Add in a demanding 14 month old and I honestly felt I needed to clone myself. It was a rare occasion that I could get him interested in anything I was doing - he would rather jump on the trampoline or run up and down the garden than participate in any organised (and I use that term loosely) activity. I would try and get him interested in painting or colouring to no avail. When I brought home his first painting from nursery I sat in the car and cried my eyes out - I felt that it ought to be me who was spending time painting with him and that it was another thing to show me how neglectful I had become. Yes, I'm very good at self flagellation as I'm sure you'll notice as you get to know me....

Over the last 4 months James has shown more and more interest in creative activities - for the first time ever we have a wall of his beautiful and precious art work. OK, so the standard is about the same level as Bea's but it's the fact it exists that matters, not the quality. At a friend's house today the toddlers were playing with an Aquadraw painting mat (a genius invention if ever one existed - it uses water so your walls are safe!) and James picked up a brush and proceded to produce some pretty determined brush strokes. I tried to paint his feet but he dissolved into a fit of giggles when the brush went near his toes so we turned that into a game instead.

This creative bug has got some drawbacks, however, and we had another of our "incedents" this evening. I had left the jar of pesto next to the hob after I made the children their supper. After supper Bea wanted to watch her favourite programme, In the Night Garden, so I went to the playroom and turned on the television for her. I thought James had followed us but then realised he was rather quiet - I don't need to tell you the rest do I? Thankfully my husband got home a few moments later and after a bath and a mop you wouldn't know anything had happened....

Family day trip

2008-02-17T09:07:00.000-08:00

It's days like today that reinforce just how different our life as a family really is. When we decided to start our family (just over 5 years ago now - how time flies!), neither of us ever imagined that this is how it would turn out. I knew it would be challenging, hard work, rewarding, frustrating and difficult but never realised HOW difficult it might be. 15 months ago the life I'd imagined was taken away and replaced with a completely different one - the day James' consultant confirmed my suspected diagnosis of Autsitic Spectrum Disorder shattered my very being. The last 15 months have been an incredible challenge, and I would be lying if I said that I feel things are completely back on track. Parents of children with ASDs describe life as a roller coaster at the best of times, so it looks as if we're on this ride for a long time yet.

We woke up to beautiful sunshine and I took the spur of the moment decision to go to Willows Farm Village for the day. So we bundled the brood into the car and set off for a family day trip. This was our second visit and I have to sing their praises - they really do accomodate disabled visitors - there is a discounted entrance fee and one adult carer can accompany the disabled person free of charge. All areas are wheelchair (and buggy!) accessible and there were plenty of disabled facilities.

Most families see weekend trips like this as an enjoyable part of family life, bringing everyone together and spending some "quality time" together. It's a bit different for us. We spent most of the morning preparing James for what was going to happen - most of the journey was spent telling him we were going to see some animals (and I was praying that the animals I'd mentioned would all be there - autistic children don't like surprises and don't cope well with change, so if I said there was going to be a horse, there had better be a horse there!). I wonder how much of this really helps as James never really acknowledges what we say, but I'm so used to doing this now I don't even think about it. Maybe one day I'll be brave and not give him any preparation, but I'll have to be prepared for the consequences.

Walking around the farm my daughter was pointing out all the animals, stroking them, saying hello and generally being a very typcial 20 month old. James on the other hand would have wondered around without actively noticing anything if we didn't point each little thing out to him. We must have been the only family pointing out the yummy newborn lambs to our four year old. But it was worth it - for the first time in a long while he actually made the appropriate animal noises - to hear his "baa" "moo" and "neigh" was like music to my ears. Not only that, but he even pointed - he stopped finger pointing at around 24 months so this was incredible. My heart was melting and I was truly ecstatic as I gave him a "high 5" and hugged him close, saying "great pointing James!".

Today was a huge success, and James has been more communicative today than he has been for months, so it looks as if family day trips are going to become a regular occurence.

Locked in...

2008-02-16T09:13:00.000-08:00

My first post and it's the first of many honest admissions. Yesterday, my son decided to make his escape into the big, wide world. Out the front door, before I'd even realised he'd gone. My heart was in my mouth (I always thought that was a cliche, but it's not - it describes that moment where you think your world has ended and life will never be the same again) and I felt sick. At the same time I was running into the street, screaming his name at the top of my voice (knowing full well this was totally futile - he doesn't answer to his name when I'm calling him on a good day....) looking like a lunatic. No, honestly, I was in my slippers, with my knitting tucked under my arm - heaven knows what the neighbours thought. I looked up and down the street, screaming like a banshee and was about to start crying when I heard a familiar "tshk, tshk, oooh aaah" sound. There he was, behind me, standing in front of the garage and stimming away as if nothing unusual had happened.

So today my husband was sent off to purchase a chain for the front door. I can't risk this happening again especially as I may not be so quick to notice his disappearance and he may wander a lot further next time. It has made me wonder what would happen if he did wander off - James is completely non verbal and has such a limited understanding of language that he'd never be able to make his way home. I also wonder whether in this day and age anyone would even bother to stop and try and help him, fearing they would be accused of abuse or worse. The irony is that this sort of attitude leaves him more vulnerable to exactly that. The media has a lot to answer for.

I often think that James is "locked in" within his autistic world, somewhere he doesn't let me visit, and now we're all going to be "locked in" together.