6pm on a Sunday night and I'm 'Mummed Out.'

It's 6pm on a Sunday night and I'm all 'Mummed Out.' That is I've just about had enough of the full-on minute-by-minute attention my child needs and I'd quite like him to go back to school thank you.

It's not that this weekend has been particularly difficult, and he's actually being quite affectionate at the moment. It's just that I get fed up with the fact that every time we have a lovely outing it always ends in a meltdown.

We went for a walk today and fed the ducks, with friends and their two kids. Then on to the all-you-can-eat Chinese buffet which is always a hit with kids because a) they don't have to wait for their food and b) they can choose what they eat and fill their plates as often as they like.

He actually behaved really well but just before we left I took him to the toilet and he shut his finger in the door. Not unreasonably he screamed the place down. So we tried to distract him with a trip to the arcade which worked for about 10 minutes until he got over excited and kept trying to wreck the pool games and run down the bowling alley. So we had to leave. Meltdown time.

His big sister was so upset at being kicked in the legs and was really embarrassed by the whole thing. I got scratched a lot. We lost the shoes along the way, and found them again. He had a fireman's lift and was wrestled into the car, still screaming and scratching.

I know the triggers are there. I know he finds some things hard, and in retrospect we should've avoided the arcade as it was too much stimulation for him. But I just get tired with the struggle we have at the end of every nice family outing because he doesn't want to leave or it all gets too much.

On New Year's Day it happened when we went to the beach. He was lovely for a while and then started causing problems by pushing other people's dogs and we had to leave. Meltdown time.

I guess I'm still getting to grips with his autism, and I don't really understand how his brain works. But it's so frustrating. We have a lovely time and it always ends in tears.

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.

The last two straws

For the past 4 months we've been experimenting with new drug options for little monkey's epilepsy. It's in response to a change in the fit pattern which ended up in a massive status epilepticus lasting more than 70 minutes.

The first drug we tried was a bit of a disaster, he had a huge allergic reaction and puffed up like a huge red balloon. Poor little man needed 3 days off school to get over that.

The second one hasn't been much better, although this time the side effects have been different. It changed his behaviour, and he started lashing out at people. His most common trick is to scratch you round the face and it often comes without warning, so quickly that there's nothing you can do to stop it.

So yesterday was 'last straw day' for this drug. The transport people ominously turned up on our doorstep to tell us that he'd scratched another parent round the face for no reason causing quite a big scene at pickup time. And he had another fit, the poor little man spent all morning crying and throwing up after another one of his weird early morning seizures.

We looked at the seizure log and it turns out that he's still having the same number of fits as before we started on this drug, but it's turned him into devil child. No contest really.

But it's scary because the next status epilepticus could be even more dangerous than the last, and when they happen at night we have no way of knowing and no way of administering emergency care.  

Every time we try a drug it's a leap into the unknown. Every time we remove a drug the same. What will happen next and will we ever get control over these seizures? Nobody knows.

When going to A&E is actually ok...

Most parents don't go to A&E much, but we are there quite often. Unusually on Sunday our trip to the hospital was so 'normal' that it was almost good. Little monkey had been free-wheeling down the hill on his bike getting faster and faster. The only problem is, he doesn't know how to use the brakes. Quick as a flash he'd lost control and flipped over the handlebars, face first. One look at the great big gash on his chin and I knew we had to take him in. Once there, with pain relief administered he soon calmed down and we settled into the kids room for the interminable wait to be seen. But as we got bored and frustrated at being made to wait with a blood-stained child, it actually occurred to me that this was a rather good trip to A&E. Normally we enter through the ambulance bay doors, having come in on Blues and Twos. Normally he's wired up to a heart and BP monitor, with an IV in his arm and a tube down his nose. Normally he's unconscious and doped up to the eyeballs on various different tranquilizer drugs. Normally we have to spend several hours in the children's ward while he recovers. But this time it was what other people would call normal. He was going too fast on his bike, just like any other little boy. He fell off and cut his face, just like any other little boy. And we waited a whole hour for a 3 minute procedure, just like any other family. Sometimes it's ok to go to A&E, because it reminds you that he still does normal things and he's just a kid after all.