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.

Stuck in a dilemma between medication and behaviour

These last 2 weeks have been emotionally fraught and we feel like we're trapped in an impossible situation. Little monkey had a very long, dangerous seizure in July and since then the doctors have been trying various medications. But it's taking its toll. At school they've had a series of angry outbursts where he's lashed out at staff and children, scratching, biting and kicking. They've had to adjust the staffing to cope because there has been a huge increase from last term.

So now we're stuck between wanting to have his seizures stopped because they're potentially life-threatening or living with him lashing out every time he gets cross. Luckily for us he is a great special school and they are being very supportive. The consultant wants us to give it another 4 weeks and see if it settles down. The drug does seem to be having a positive effect on his epilepsy, but can we handle the side effects?

When special siblings make you cry

"I want to die" she said softly to me. She's 8 years old and has been living with her special needs brother for as long as she can remember.

She's said it before. Last time I called in the children's mental health team. They did a load of work around worries and it went away for a while, but sometimes it comes back.

This time, though I decided to deal with it differently. Instead of being rational, sensible, explaining the finality of her statement, I decided to let her see me cry. Not to make her feel guilty for saying it, but to really let her know how much I want her to be here.

"You're so busy with him," she says, "if I wasn't here then it would just be easier, you would have more time." She wants to die or to go and live with another family, at age 8 perhaps these two things can seem interchangeable.

I tell her that no family is perfect, that wherever she goes there will be problems of some kind, that she is really loved and fortunate in many ways, that I want her to stay and it upsets me to hear that she wants to leave us.

Finally, when we are both in tears, she stops hiding her face and jumps into my arms. "I'm going to stay now," she says at last.

Special siblings. They tolerate a lot, they cope so well. But sometimes it has unintended consequences, and sometimes we both cry.

I had a career once...

Once upon a time, I had a good career. I had a high-profile, well-paid media job in London. Of course I knew things would change when I had kids, employers don't want the hassle of someone who can't come into work because their child is ill for instance. You have to make adjustments, switch roles sometimes. But I had hoped that after 6 or 7 years I could re-start my career again.

Then along came our little monkey. He was healthy and normal at first, but started having seizures as a baby. At the time I thought, 'As long as it's just epilepsy, it will be fine.' But it wasn't. As the years went on and he stopped learning to speak it became obvious something wasn't right. So I made him my job. I spent all my time learning sign-language, pushing for therapies and trying to integrate him into playgroup. Getting him a statement of special educational need was a full-time job in itself.

Now he's in a good special school and he's doing well there is cause for celebration. I am proud of what I've done but after 6 years devoted to trying to help him, I feel that I am missing out. I can't restart my career as I had dreamed of doing. Outside of school he needs a 1:1 carer, which means I can't send him to an after school or holiday club and I can't send him to a childminder who will have so many others in her care.

Which means if I want a normal job I would have to be earning a huge amount of money in order to pay for a nanny. I do have a job during school-hours, which on a practical level is very useful, but I find it more and more frustrating every day. My experience is not valued, I am not listened to, I am told if I don't like it then they have plenty of people waiting to fill my role. It's all such a long way away from what I had.

Most of the time, I think about little monkey and his sister. 99% of the time, they come first and second, I come last. But sometimes, when I've had a really awful day at work, I think of me and what I've missed out on because of his disability. And sometimes it just doesn't seem right.

How do I stop worrying enough to get some sleep?

What is it about motherhood that brings with it a barrow-load of worry? No matter how much you do and how hard you try it's nearly impossible to shake off that little nag in  your head. When the child is ill, it's almost constant. Regular kids get sick for a week or so, then it goes away. You worry about them for week or so, then you stop. But somehow I seem to worry all the time, during the day and (worst of all) at night.

He was 5 weeks seizure free when we went to see his neurologist. She was thrilled but the very next morning he had a fit. He used to have all the seizures in the afternoon when he was tired. Trouble is, now he's having them in the early hours of the morning. When I am trying to sleep. And the first thing I know is when he wakes up crying, vomits and cries for the rest of the day.

So my reaction? Worry. I go to bed worrying that he'll have another serious fit when I'm asleep and he'll stop breathing.  I wake up at 4am, sweating and my heart racing, worried that he's having another fit. I'm living in a sleep deprived state because I'm struggling to cope with the uncertainty of not knowing when it will happen, and if I will know about it.

I've asked my OT for an epilepsy alarm and put our names down with a charity that provides them, but there's a wait. Even when the thing arrives I don't know if it will work (my epilepsy nurse doesn't think they're very good). So whether I get an alarm or not, I still need to learn to relax. How do I let-go of my fears so that I can sleep?

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.

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.

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.

Really bad status seizure. He's fine now. I'm not.

It's interesting how it takes little boy much less time to get over a catastrophic fit, than it does me. He sleeps for hours, eats, sleeps some more and then he's fine. I spend days, weeks stewing over what happened. Waking up in the middle of the night having panic attacks.

Last Thursday at 8.30am I woke up with a start and realised we were going to be late for school. He was in bed, having a seizure which had clearly been going on for some time. I gave the emergency meds while husband called the ambulance. It was obvious this was going to be a bad one.

The crews arrived in good time and gave more meds but it made no difference so off we went to A&E. In the past he's always stopped before we got to hospital but this time it was much more serious. Wired up to the heart monitors, oxygen mask on and this time tube down his nose as well to stop him choking on any vomit. Cannula in each hand - in goes the intravenous diazepam. This is the first time they've had to do that. It doesn't work. They do it again. He's still fitting.

Husband and daughter come to see him but I send them away. With a big puddle of blood on the floor this is not a scene I want her to see. It's now been at least an hour since I found him and the fit is still going on, so they put him on a Phenyton infusion (anti-epilepsy meds). Its a giant tube, perhaps 6 inches long and one inch thick and it takes a good 15 minutes to go in.

Meanwhile the anesthetists have been called down. There are now 6 doctors and 4 nurses working on my child. I stand at the end of the bay in a state of shock, can't quite believe what I am seeing. The next step is to sedate him, intubate and take him up to intensive care.

Just as they're getting ready to do it, I see his leg move, "Look voluntary movement," I shout, "He's stopping." All 10 people take a step back from their work and watch him. Silence.  He moves his arm, then leg again, and then he groans. It's over.

In the end the fit had lasted 75 minutes - at least. The doctors disappear one by one, until only the paediatric registrar is left. We wait for a short while and then take him up to the children's ward to recover.

6 hours later he wakes up, drinks some juice and gets out of bed. A bit bumbly on his feet but he's on the mend and by the next day he's fine.

5 days later and I'm still having nightmares, flashbacks and insomnia. I know it could have been worse. I know he's fine and I want to focus on that. But I'm terrified it will happen again, I'm terrified next time he'll be (more) brain damaged, and I'm terrified that one day this will happen and he'll die.

It's difficult to get over days like this.

How it all began

I sit indoors to get some relief from the scorching afternoon heat as I wait for the little man to return home from his special school on the bus. I never imagined life would be like this when he was yanked out of me 6 years ago. I was just glad that labour was over and to all eyes he looked like a healthy little boy. He fed, he slept, he cried but not too much. We were lucky.

But then everything changed early in October when he was just 8 months old. We were at a public swimming pool, all four of us. I had the toddler, my husband had the baby. There was something in the way he called my name that told me right away that there was a problem. He sounded scared. When I looked at this little boy it wasn't immediately obvious what was going on. He was still looking at me and smiling, but both his legs were jerking in a rhythmic movement. I called for a first-aider.

"We think you should take him to the hospital," they suggested rather unsure of themselves. No mention of why or whether it might be urgent and he still looked okay, apart from the leg jerking. We started to dress ourselves but he quickly went downhill, and by the time the ambulance arrived he was blue, vomiting, limp and lifeless in my arms.

When we got to A&E there were 3 doctors and 3 nurses waiting for us. They wired him up to every kind of machine I could see and put a needle in his arm. Nothing like this had ever happened to me before - my legs went from underneath me. Someone sat me down and the questions began.

It was an afrebrile seizure, which means he didn't have a temperature at the time, and may never happen again. But they would do a brain scan and an EEG just to see.

Since then we've had countless trips to hospital and a variety of different medications. It feels like they've conducted more tests than on the atom bomb, but still we don't know why he has fits. We also don't know why he stopped learning to talk at 18 months and now, aged 6 is developmentally 3 years behind his peers.

Be under no illusions. My child is not the most disabled in his school, not even his class. But I don't think it's the level of the disability that matter so much as how it affects the family. My son looks 'normal' so when he kicks-off in public people tend to judge me as a parent. He is a danger to himself and others and requires constant supervision. His health is better than it was, but is still a worry.  After much fight and stress he now attends a great school who do a lot to help him. But all this comes at a cost and having a disabled child (whatever their level of need) is a huge strain.

So I'm hoping to spread a little insight and honesty about what it means and if this strikes a chord with you, then feel free to get in touch.