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?