Saturday 27 August 2011

Why do the holidays have to be so long?

Only 10 days to go and he's finally turned. We've done well to get this far. I know many parents living with special children have a terrible time in the summer holidays. I'm pleased that he's managed the lack of structure so well up to this point. And I'm pleased that my efforts with visual timetables (weekly, daily, sometimes minute by minute) have played an important part.

But I guess by the end of a long period at home he's just had enough. It doesn't help that his sister is away for the weekend, and Dad is home for the week. All changes to the routine which upset his balance. Then there's the new medicine - our consultant said the only side effect to worry about with Keppra was "rage". Now the rage, or anger at least has arrived. Routine jobs such has getting dressed have become beset with tantrums again, toys get thrown across the room, I am getting bitten and scratched. All these behaviours went away when he went to special school. Four weeks away from special school and gradually they come back. 

So I'm wondering to myself, why can't we have four week summer holidays instead of six and a half weeks? The extra days are for staff training which used to take place in the holidays when I was a kid. I know it would take a massive upheaval to change anything like this, but really some kids are just not cut out to cope with a long break from the kind of schooling that keeps them stable and feeling safe.

Now all I have to do is try to keep my cool and not completely loose my rag with him over the next ten days. Well I can try and if I don't manage it, I can try not to beat myself up too much. Nobody's perfect after all.

Monday 15 August 2011

Three weeks down. Three weeks to go.

The first week of the summer holidays began with us all spitting into a tube. We've been put forward for the Sanger Institute DDD study (Deciphering Developmental Disorders) and they needed and DNA sample from all of us. Monkey-boy thought it was hilarious. Most of the time he's not allowed to spit, so given permission he was in his element. First they'll do a detailed micro-array analysis (laying all the genes out looking for missing bits), then they'll sequence his genome.

It will be at least a year before we know anything but frankly I'm not holding my breath. Sometimes it feels like he's had more tests than the atom bomb, with EEGs, brain scans, spinal taps. I've almost given up on medical procedures to give me an answer. I would, however, like to know if he is autistic and that is my next step.

There are some indicators; he struggles with change and needs structure and routine. Right now we are at the mid-point of the summer holidays and his behaviour is going downhill fast. Yesterday he stripped naked in the park twice and ran away from me across a road. This morning I found myself silently chasing him through a supermarket (no point in me shouting, it won't stop him and just draws attention). He's kicking off about food, bathtime, just about everything.

He's currently obsessing about water. He want to go the beach every day and get the water slide out, although he doesn't actually play with it. He just turns the tap on and off.

Then there's the language, he's very delayed. At the age of 6 he can now talk in short sentences which has been wonderful but it's very basic and needs-based. "I want apple juice," has reduced his anger and frustration by 80%, but we still get the conversations which go on all day when he can't accept that I've said no to something. "I want go beach." No not today, it's too cold. One minute later. "I want go beach." No not today, it's what? "Cold." He parrots the words back to me but he doesn't understand.

So what about the social skills? Unlike many autistic children he is very loving and giving. He hugs and kisses me all the time, but he also does it to everyone he meets, sometimes shocking strangers. Today at the deli counter he started stroking an elderly gentleman's bottom. I had to explain that he was just trying to be friendly. Luckily the man found it amusing rather than horrifying.

So while I wait for an appointment with the autism specialist we spend our summer holidays trying to help him cope with his lost routine. I've made social stories, visual timetables, and sticker charts are next. I spend hours with the laminator. It helps a bit but we really need school to start again.

Am I ok with our lack of diagnosis? Well not really, I want to know why he is the way he is. But then again I'm not expecting to ever find out. After 5 years and numerous tests we seem to have reached the limit of human knowledge on his condition. I guess I just have to wait and see if the Sanger Institute can shed any light. Maybe they'll find a new syndrome but it won't change life for him in any real way, it would just give us a label - and that is of limited use.

In the mean-time we help him, we love him, we enjoy him. Some days it's hard though.

Friday 12 August 2011

Special Siblings and Special Worries

How do I reassure a worried 8 year old that her brother is not going to die? It's particularly difficult when it's the same fear at the back of my mind which I'm struggling to contain.

On Tuesday night his big sister came downstairs at 9pm, said she'd had a bad dream in which he had a really bad seizure and died. We spent the next hour and a half talking about it, in the end I had to take her into my bed so we could both get some sleep. A few weeks ago she saw him have a really bad status fit (lasting more than an hour).

"He's not going to die," I tell her. "But that boy in red class died," she says. At his special school they've lost two children in the last two years. I try to explain how that child was much more ill than her brother, but it's not really sinking in.

I don't blame her. When you've seen your little brother carted off to hospital in an ambulance umpteen times, and kids from his school start dying then you're bound to jump to the conclusion that he's next. I know sudden death in epilepsy is rare, and mainly affects adults but I'm scared too. Even though I hide it from her.

I guess this is just the uncertainty we all have to live with. All parents have it to some degree, they never know if their child might get knocked over by a car, or fall out of a tree. But when you've got care plans to remember, medicine to order and give twice a day it's hard to put it to the back of your mind.

Still, today at least we are trying. He's at respite for 6 hours, at our fabulous local disabled children's centre. He has a 1:1 carer, and a nurse on site just in case. He loves it, and we love it. And for a few hours we will try to put our worries aside and just focus on being ourselves.