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.

What a weekend

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

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

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

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

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

When you least expect it....

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

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

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

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

Locked in...

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



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



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