How three years of special school changed my child

Today is a big day for little monkey, although he doesn't know it. It's his final day in the infants class at his special school. He's been there for 3 years and in that time he's been transformed. When I took him there aged 4 he was very small, with a huge floppy fringe and babyish looks. But he was also angry, barely verbal, hyperactive and out of control. He would frequently bite, kick and scratch people for no apparent reason. He was still wearing a nappy 24 hours a day and toddler reins whenever we left the house to prevent running away. I felt like he was a little Tasmanian devil, over which I had no control. We didn't have a diagnosis, I didn't understand him and I was angry with him much of the time for his appalling behaviour and my inability to do anything about it.

Three years on we still have problems but they're nothing in comparison to the way they were. He is now a happy, calmer more loving child. He can wait, he can listen, he can talk in short sentences. He can complete 'jobs' like hanging up his coat and putting his shoes on.  He can use a knife and fork, and put his clothes away when reminded. He will use the toilet some of the time and he has blossomed into a really lovely little boy. Gone are the baby-face looks and the chubby thighs, instead I have a lean, strong, happy 7 year old ready for junior class.

Of course not all of this is down to special school, but without their help and guidance we would have been lost. While I was struggling, with nowhere to turn, they got on with it. They took no nonsense from the start, ignoring the biting so that in 6 weeks it had completely gone away. They were also incredibly strict with him, with a sort of "you may be disabled but you still have to get on with it" attitude, which has served us all well. Best of all they didn't just teach little monkey, they also taught us how to cope with him. How to accept him for who he is and how we can manage his behaviour if we follow their lead.

This week I took all the staff thank you cards and the nicest cakes I could find, but it doesn't really show the depth of my gratitude to them. Without the teacher and the TA's in that class we would have been sunk, and I can't thank them enough for the help they have given us all.  

Hospitals...

This week's #specialsaturday theme on twitter is hospitals. We spend a lot of time in them. Thankfully not every week but I do sometimes joke that if the local ambulance trust had a loyalty card we would have accrued enough points for a hip replacement by now.

Our hospital visits fall into two categories, outpatients (which can be stressful), and emergency admissions (which are always very stressful). I've learnt to reduce the stress of outpatients in a number of ways.

Firstly, I only take him when I need to. Half the time the doctor never examines him, they just ask me questions, so I always check if I really need to bring him next time. I tell the doctor how my boy finds it stressful to come, and sometimes I leave him at home.

When I do take him, I do lots of prep. I have taken a photo of him inside the waiting room at the hospital, and I have pictures of the outside of the building from the internet. Before we even leave the house I show him the pictures and let him hold them all the way there. Since I started doing that he's been a lot calmer.

Unfortunately there's nothing I can do to make emergency admissions less stressful. These happen when he goes into status epilepticus, that is when he has a seizure lasting more than 30 minutes. Sometimes he's had really long fits lasting an hour and a half.

But I have learnt to prepare and now I know the drill. I give the medical staff the quick rundown straightaway; name, age, known medical conditions, what meds he takes and the amount, details of his last seizure, name of consultant.

Then I stand and watch while they put tubes down his nose and in his arms and wire him up to every machine they can find, and I wait to see when he will stop.

Look out here comes a D-O-G

We need help - little monkey's dog obsession is getting out of hand.

Like any 7 year old boy he needs lots of exercise, so we try to take him to the park every day, but as soon as he sees a dog he sprints off towards it. He won't stop or come back when I call him, he just wants to throw a ball for the dog to chase. But it's problematic for a couple of reasons. First, I can't have him running off every time he sees a dog (what if it were on the other side of the road?) Secondly, some dogs are not very child-friendly. Today we met two who growled at him when he tried to play with them. The owners kindly explained they were not good with kids but he doesn't understand that some dogs are ok and other dogs are not.

I don't want to take away the joy he gets from playing with dogs, and it would be near impossible anyway because we see them so often, but I need a plan to make it safe for him to do so. Of course we've thought about getting our own dog, but I would need to supervise him with it all day - and life is difficult enough already.

So can anyone help with ideas or just some insight into how we can manage an obsession like this in a safe way?

We are normal... just a bit different that's all.

I think most people would find our 'normal' pretty weird or scary, exhausting or tedious. They might also find it funny and full of love but it depends which way you look at it. And I can look at it from different angles many times each day.

Normal today was watching my son have an epileptic fit three times, his little body shaking all over. Normal is getting his 8 year old sister to rush for the emergency medicine bag, and grab a towel to mop up the saliva.

Normal in our family involves carefully calibrating each activity to decide whether or not little monkey can cope with it - and whether we can cope with his behaviour. There is no spontaneity; instead everything needs to be thought-out and planned, with a back up in case it goes wrong.

I guess some people would be annoyed to hear him repeat the same sentence over and over - sometimes 50 times a day. They might be horrified to learn that he still uses nappies - especially if I asked them to change one. But all this is normal to us.

Some things about our 'normal' are just great - the joy when he learns a new skill, the fun we have dancing round the living room, the happiness in his little face when one of us return home. Best of all are the endless stream of hugs and kisses from our little man - now there's not many 'normal' 7 year old boys who want to hug and kiss their Mum eh?!

To us all these things are so normal that we don't even notice them anymore, and I've come to realise they are just a variation. I have always said that my son is normal, just a little bit different to other kids. And this life is normal even if most people wouldn't recognise it as such.

Thanks to Renata B at Just Bring the Chocolate for starting the #definenormal blog-hop - please check out more posts on the subject by clicking on the links at her website. http://www.justbringthechocolate.com/blog/ 

I love my autie

I spend a lot of time talking about when life is difficult or when things go wrong, and I spend far too much time talking about my failed attempts to toilet-train my little boy. So as it's World Autism Day I thought it would be nice to talk about the good things, and why I love my little autie.

I love the way he jumps up and down and flaps when he's excited
I love the way he is bold and brave and will try anything physical
I love the way he can say simple sentences now and sometimes even 'please' and 'thank you'.
I love the fact that he's happy and learning at school
I love the way he throws his arms round me and shouts "Mummy!" when he's happy
I love the way he's brilliant at puzzles
I love the way he takes pride in being able to write his name
I love the fact he's made me see the world from a different angle

In short I love my little monkey, who has autism and epilepsy and severe learning difficulties.

A beautiful moment of clarity

Yesterday we went to special school for little monkey's annual review and it was time to take a hard decision. He has been going for inclusion at a mainstream school once a fortnight and the teacher there had written a report which read like a list of all his 'wrongs.' How he draws on other children's work, how he lashes out when he is angry, how he sings loudly and covers his ears when other children join in. We had hoped he would learn to play with mainstream kids, and be accepted by them, but instead he's in danger of annoying and frightening them with his unpredictability.  It's a hard thing to accept your child cannot cope in mainstream. It confirms all fears that he really is very disabled. It's a hard pill to swallow.

At the annual review meeting held at his special school we spent more than an hour talking to his class teacher and the head about his progress and goals for the future. They think the autism class will be the best place for him next year, with a high staff to pupil ratio and lots of outdoor activities to feed his hyperactivity. After the meeting we asked if we could see what he was doing, so the teacher took us through to the classroom. We stood at a darkened window and watched him play outside with his classmates and as we did, I witnessed a wonderful thing.

He was riding a little bike round and round in circles with a huge smile on his face, he got off the bike and handed it to another boy, inviting him to have a turn. The new boy got on the bike, and little monkey got onto a tricycle. They rode round in circles together, smiling and looking at each other. He was playing with another child. He actually invited this child to play with him. It brought a tear to my eye. For years we had hoped he would learn to socialise at mainstream school - yet here at his special school he was socialising very nicely with his real peer group. Children to whom he is equal in every way.

However much I wanted him to be like other kids and to cope with mainstream school, the truth is that at this special school he learns and grows and thrives. He learns to play with other children on his own level, and he is happy. And at the end of the day, that is priceless.

When to give up on inclusion

We're about to face a sad decision. We're coming to the time when we have to decide if we can carry on with inclusion for out little boy.

He's been attending our local school for one afternoon a fortnight for the last year and a half. They've done their best to accommodate his needs but it's getting increasingly hard.

We started there because we wanted him to have friends in our local area, friends who didn't have a disability. We wanted him to be visible in his local community and accepted by the children.

But it's in danger of backfiring because he doesn't interact with the kids in the classroom, and instead of learning to get along with them, he's scaring them.

When he gets cross he screams or runs round the classroom, and sometimes he knocks them over. Sometimes he scratches his carer, who's becoming increasingly worried about managing his behaviour as he gets bigger.

And as he gets older his autism becomes more and more apparent. He puts his hands over his ears to block out the noise, he sings loudly with no awareness of others, he parrots the same phrases over and over again.

"What do you want to achieve for him?" the teacher asked me, because it's clear our original aims are not working. I want to achieve inclusion and acceptance, but how?

It's hard to give up on inclusion because in a way it confirms my worst fears about his disability. That he will never cope in a mainstream school, that he really is that disabled. That he won't grown out of it or get better or any of those other things I hoped for once upon a time.

He will have to function in a neuro-typical world one day and special school will do their best to prepare him for it, but who will prepare the rest of the world, for him?

Mother's Day - a luxury only for some?

My little boy's birthday falls on Mother's Day this year. Long ago I decided to throw him a party with all his friends from his special school and from his mainstream inclusion school. He goes there just a few times a term but we felt it was important for him to mix with kids who don't have special needs. We wanted him to learn to play with them, and for them to learn to accept him, and so far it's been going pretty well.

So I booked this party and it falls on Mother's Day - the only day I could get the venue that was suitable - and I sent out the invitations. 10 kids from his special needs class, and 20 kids from his mainstream class, and I waited for the replies. From the special needs class 80% are coming to the party. From the mainstream class just 20%. The reason they all gave is because it's Mother's Day. I have no reason to doubt them (they all turned up to his last party and loved it), but I find it interesting that the families with 'regular' kids make plans to celebrate this day but we do not.

It is that Mother's Day is too much of a luxury for special needs families to indulge? Is it just not practical for Mum to take a day off? Or do we celebrate it, but just not in the same way? The thought of taking my autistic child for lunch in a restaurant on one of the busiest days of the year is madness, he would be overwhelmed by the noise and stressed by the waiting. Or maybe it is that the whole process of being a mother to a special needs child is so all-encompassing, so all-consuming that we can't allow ourselves to take any time off. Which is it then ladies?

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.

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.