Sunday, 28 September 2008

Precious moments

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.

Saturday, 20 September 2008

The drugs don't work...

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....)


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?

Thursday, 18 September 2008

What a day....

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?

Monday, 8 September 2008

Breaking news!

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.

Saturday, 6 September 2008

The kindness of strangers...

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....

Friday, 29 August 2008

It's all go here!

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.

Thursday, 14 August 2008

Branching out

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.

Monday, 11 August 2008

The good life

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!

Friday, 8 August 2008

Growing up

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....

Sunday, 3 August 2008


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....

Friday, 27 June 2008

New beginnings

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.

Wednesday, 18 June 2008

Happy Birthday

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.

Wednesday, 11 June 2008

Mummy, I want....

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!

Saturday, 31 May 2008

Not again!

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....

Wednesday, 28 May 2008

What a difference a year makes

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!

Sunday, 18 May 2008

All gone

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....

Sunday, 11 May 2008

A week away

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........

Saturday, 19 April 2008

Locked in (again....)

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!

Tuesday, 15 April 2008

What animal would you be?

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!

Saturday, 22 March 2008

Every cloud.....

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.

Tuesday, 18 March 2008

Thanking my lucky stars

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.

Tuesday, 11 March 2008

On edge

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.

Friday, 7 March 2008

Reduce, reuse, recycle

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.

Monday, 3 March 2008

Baby steps

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.

Sunday, 2 March 2008

Stronger together

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.

Friday, 29 February 2008

Boing, boing, boing

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.

Thursday, 28 February 2008


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.

Monday, 25 February 2008

Pay it Forward

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, 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 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.