Saturday, 19 December 2009
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.
Wednesday, 16 December 2009
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.
Monday, 14 December 2009
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.
Sunday, 13 December 2009
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.
Friday, 11 December 2009
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.
Sunday, 15 November 2009
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!
Tuesday, 3 November 2009
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
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?
Wednesday, 25 March 2009
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....
Monday, 23 March 2009
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!!!
Monday, 16 March 2009
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.
Tuesday, 10 March 2009
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!
Sunday, 8 March 2009
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.
Thursday, 5 March 2009
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.
Wednesday, 4 March 2009
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.....
Monday, 2 March 2009
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.
Friday, 20 February 2009
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....
Wednesday, 18 February 2009
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.....
Monday, 16 February 2009
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!
Friday, 13 February 2009
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.
Thursday, 12 February 2009
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.
This blog will be an honest, warts and all description of my life with my autistic son. The ups, the downs, the good times, the bad times and the unexpected.
Perhaps it should come with a warning, though. For those of you without experience of autistic children (or adults) it will be an eye opener. As the months go on, I'm sure it will contain tears, hurt, desperation, laughter, danger, love and tales about poo. A bit like a good film, apart from the poo.....
Join me, learn with me, laugh with me, cry with me, live with me..................
Autism and Asperger's books
- Can't eat, won't eat - Brenda Legge
- Freaks, Geeks and Asperger Syndrome - Luke Jackson
- George and Sam - Charlotte Moore
- More than words - Fern Sussman
- Nobody Nowhere - Donna Williams
- Sensory Perception Differences in Autism - Wendy Lawson
- The Autistic Spectrum - Lorna Wing
- The Complete Guide to Asperger's Syndrome - Tony Attwood
Rest and relaxation.....
Other blogs I like
- Ana's Amigurumi
- Balmy Summer Days
- Beautiful Things
- C'QUE MES PAUVRES MAINS RACONTENT
- Girl, purl and two knitting needles
- Granny along
- In Search of Adam
- Kitty Thimble
- Knitty blog
- Life in the New Republic
- Life with Joey
- Little Cotton Rabbits
- Made for you, by Shamu
- Mother of Shrek
- My New Notebook
- Nicki paints
- Pengelly Pastimes
- Schortjes & Mutsjes (Small aprons and little hats)
- Slightly South of Sanity
- The Uninvited Guests
- The Yarn Yard
- Without seams
- Yarn Harlot
- ► March (8)