For every down there's an up.

Things that happened to my little monkey in 2011:

1. One status epilepticus (80 mins long)
2. Two new medication regimes (both failed)
3. A new type of night-time seizure emerged (with vomiting afterwards - lovely)
4. A new diagnosis to add to the list (autism)

Things that little monkey did this year:

1. Swam in the sea
2. Learned to write the days of the week (copying)
3. Climbed to the top of a huge climbing wall
4. Learned to sing 'jingle bells'

It can be so hard living with a special needs child, it can be frustrating, heart-breaking and exhausting all at the same time. But what keeps me sane is looking for the positive, amazing, clever things that he does. I know there will be more problems to face in 2012, more seizures, more trips to hospital, more meltdowns. But one question keeps me going - what will he do next?

With thanks to patient dog owners...

"Park, dog, ball" is all I seem to hear from little monkey at the moment. He loves dogs, he wants to play with dogs every day, but we don't have one. I would love one, but I feel I've got enough on my plate without adding to it by having to clean up poop and be tied to a daily regime of walking/feeding/vacuuming up after it etc. So for now we rather gingerly head off to the various parks around us in search of dogs with agreeable owners. It's a little tricky sometimes, "Oh sorry, he just loves dogs.... he likes to throw a ball for them.... he's still learning how to be gentle..."   Some owners don't like us hijacking their walk, which is fair enough, but most are pretty tolerant and happy for him to join in. And I've stopped feeling the need to explain his diagnosis to them, to be honest a big 6 year old boy who can only say a few words should ring a few alarm bells for most people. So thank you to the dog owners who tolerate and sometimes encourage us. Thanks you you he no longer sits on dogs, kicks them, or pulls their tails. He is learning to be gentle and he is having a lot of fun in the process.

Balancing the meds and the boy

Why is it so difficult to get seizure control? This week little monkey has had three seizures, one at school, one at respite and one at home. Three in a week is not good for him, as we were on about two per month. This week we also finished the Keppra, an epilepsy medication which turned him into a zombie one minute and a crazed attacker the next. Maybe the coming off Keppra is the cause but maybe it's just because he has a cold.

Whatever the reason we're finding it harder and harder to get the right balance for his meds and his life. Lamotrigine brought him out in a terrible rash. Keppra made him angry and uncontrollable. He's been taking Epilim for 5 years but has still had seizures throughout that time, and he's up to the maximum dose. I know there are many drugs out there but for some reason he seems sensitive to so many of them.

The three main issues in his life are all intertwined; the epilepsy, the learning difficulties, and the autism. Seizure control is the most important thing, but whatever we do with his medicine it affects him in the other two areas. The Keppra stopped him learning and made his autistic meltdowns worse. Whatever we do we have to balance the meds with the boy and I'm starting to wonder if we'll ever achieve that elusive seizure control.

We finally got our diagnosis - He has autism

It's been a crazy week. We're taking him off the Keppra - a drug that turned him into a zombie and  psychopath at the same time. He's had two seizures both of which started looking like an absence and turned into convulsions. But the thing that's had the biggest effect on me was that we finally got the diagnosis we had been expecting for some time.

Still, it's a shock. I had thought he was autistic for at least a year and I'd been asking various different doctors for about 5 years. But they all said "No, no, no, it's too early to say, let's just wait and see." So although I knew he was, part of me hoped that they were right and I was wrong. That he would get 'better.'

Our main developmental paediatrician (described by a friend as 'the chocolate teapot') had shooed me away about a year ago saying it wasn't important whether he had an autism diagnosis because he was already in the special school system. But I need to know. The world needs to know. And one day before he leaves school social services will need to know so we can try to get the right adult care for him.

So I ditched the 'chocolate teapot' doctor and requested a meeting with the main autism paediatrician in our county. We waited... and waited... and waited. After 9 months we finally got to see her yesterday, "It's obvious he has some kind of autistic spectrum disorder," she says, it just trips of her tongue as if she says it all the time.

I start blubbing in the office, in front of her. I cry some more on my husband's shoulder in the corridor. Again in the car park, and again when I drop him back at school. Even though I knew it was coming, even though we asked her to tell us the truth, I still feel devastated because autism is with him for life. He will never grow out of it, he will always be a little bit like he is now.

His lovely teacher takes me to a quiet room and makes me a sweet cup of tea. She listens to me for three quarters of an hour and lifts me up so I leave smiling. The brilliant HLTA hugs me as I go. "It won't make any difference to us," she says, "but maybe now you can forgive him for some of the things he does, because he just can't see that you have feelings when he hurts you." I blub again on the way home.

It feels like my life has fundamentally changed, but this morning when I wake up things are just the same. He still eats Shreddies every morning. He still wants to play on the computer all day. He still runs and climbs and gets up to mischief all the time. He is still my little monkey. And autism is part of his life, and part of his personality and part of who he is. We can't make it go away, it just is. And it's ok.