Anika’s Blog

autism

Hypermobility & Johnathan

I had quite a surprise this week – a nice one actually. Johnathan told me that he had been chosen to be on the school council. He told me that the teacher had chosen him, but when I spoke to the deputy’s head he told me that it was the children who had chosen Johnathan.

Because they recognized his natural leadership skills.

Wow! What a contrast between the boy who wouldn’t talk to anyone in the nursery to a boy that his classmates recognized his natural leadership skills!

Anyway, natural leadership skills? I hadn’t even realized he HAD any.

I mean, I know he likes to take care of and help children younger than him and he is desperate for a sibling, but a leader? Do you know something? I think he hasn’t yet realized all that he can do.

At the moment, he is struggling with his writing. We have tried all the different grips and things you can get that go on to pencils and some pens but they aren’t helping him enough. He is still complaining about pain in his hand when he writes. I know he has a strong enough grip. He can break squeezy toys with no trouble in a day or two unless they are REALLY well made.

I’m going to tell you something that very few of you probably know.

There are actually hypermobility pencils that are shaped differently!

We know he has got it, but we didn’t realize that it could impact his hand in writing. The school is going to buy one in to see if it works and if not we will have to look at sloping desks. But he can’t use them in school unless an OT says he needs one. The doctor has ruled out the other things it could be and says he thinks it is the hypermobility.

So we are going to try this with him and see if it works. The takeaway from this is, if your child is struggling with something, there are different things you can try to help them. Don’t give up after one or two. The answer is there, waiting for you to find. It may uncover something that you didn’t know and help with other things.

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Lifestyle

All in Your Head

I saw an incident yesterday that left me totally moved. Now that’s not to say I don’t find other things difficult but this for was deeply unsettling.

The Incident

Johnathan and I had been to the doctor and we came outside to see an elderly gentleman being told to get out of the car. He was protesting that he needed help. The younger couple in the car with him ended up having to help him up. They then sat him on his walker for a little rest. Then she told him to get up and walk in as he was late for an appointment.

The elderly gentleman was obviously distraught as he continued saying he couldn’t do it and she was insisting that he could! I called over and the younger man came towards the car window I had pulled down. I said to him that he could get a manual chair from inside the doctor’s surgery.

He assured me that he could walk because it was all in his head. They all knew he was just lazy. He had been lying in a hospital bed for 9 weeks and now he refused to walk because he was lazy and didn’t want to help himself. The doctors had said there was nothing wrong but he was choosing to be like this.

I think the difficulty comes when people don’t understand what “all in your head” actually means.

You see, it didn’t matter if it was in his head or not. The fact is that he believed it so his body was doing it.

As we were leaving Johnathan asked me why an old man would choose to be lazy and I explained to him that it wasn’t what he chose to do but his brain was telling him he couldn’t do it.

It actually made me stop and think how fortunate I was when this happened to me 9 years ago.

I had an understanding husband who supported me. And a physio who also did and basically taught me how to walk again in the 8 weeks I was in the hospital.

Without that help and support, I would not have coped with life and I’m sad to see that things like this still go on. What do you think?

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autism

Change & Transitions: How to Manage Them

One of the things you generally know about autistic children is that they don’t cope well with changes or transitions.

And yesterday I inadvertently caused a major problem with my son.

I was having a bad day with my breathing and so instead of making the effort of putting in the work of getting the wheelchair in and out the car twice (so four times in total), I decided to go by wheelchair.

You see, when Johnathan first started school, I thought I would go either by car or by wheelchair whenever I either picked him up or took him in. However, I’m not actually sure I chatted about that with Johnathan. I certainly did with Kevin and his parents, but I just don’t remember doing it with Johnathan.When you haveWhenW

With autistic children, you cannot just introduce change.

They will react in the most negative fashion imaginable. My son decided he was going to bounce up and down on my knees as I sat in the wheelchair and scream and flap his hands.

Well, I say decide but it wasn’t actually a choice he made – it was an instinctive reaction to hearing that not only did he have to transition between school and home, he had to do so in a way that he was not expecting or anticipating.

One of my friends managed to show him that he was hurting me. They got him to calm down a bit and get him off my lap. I had been pushing him with all my might to get him off me, but he was fighting back. My word, he is strong! Im fact, I would go so far as to say that he is getting to the stage where he will actually be stronger than me.

When we got home, Kevin told him off for his behaviour at the school. Then, let him know that Mummy, now, would not be able to cook the dinner he wanted. His actions had led to the fact that I was in so much pain I was having to take extra painkillers and put my compression gloves on my hand to help. Unfortunately, when my hands are bad, I tend to drop anything much heavier than a cup. So making dinner was out of the question for me.

Realising My Mistake

In the morning I was chatting online via messenger to a friend. She asked me what I knew about change and autistic people. She pointed out that I had introduced a substantial change without warning. Really, he had just reacted badly to it.

As soon as she said it, I realised that she was correct and that I had behaved in an unfair way to Johnathan.

He wasn’t expecting to walk home. Nobody had prepared him to recognise that if I came in the wheelchair and not the car it was because I had to in order to be able to collect him after school.

So really it wasn’t actually his fault for behaving the way he had. He was reacting to a sudden, unexpected change and unfortunately for me, it was a bad reaction as he was not anticipating walking home when he saw me.

I am so glad that I was able to apologise to Johnathan and that he was able to accept it. He needs to know if a big, sudden change is about to happen and be prepared.

Lesson learned for next time. Make sure he has plenty of warning.

Don’t suddenly introduce something new. This is the start of his school life and he needs the familiarity of knowing what is going to happen.

Do you have a situation like this where you learned a lesson about someone else? It’s not easy to come back from it, but you can always go and apologise. You can recognise where you need to change what you do.

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Lifestyle

Johnathan & The Disco

Johnathan had a really big day. He went to his very first disco! We had never even suggested he should go to anything like that because we really didn’t feel he would be able to cope with it.

Having said that, we were proved wrong.

He loved it! He was absolutely delighted with the evening, except for 2 things. One, we hadn’t given him enough money to spend to get a drink. Two, he was disappointed that he didn’t win the best dancer in the room. Considering he is in the first class of primary school and has never been to a disco, we were not surprised!

Now that I think about it, he loves music.

And stuff that I personally find a bit head-banging. In fact, his music has become too loud for me. So we have set up a system where he is locked into downloaded music on an ipad. We use it for when he is in the car as he hates the car noise and the sound of rain on the car.

Also, he was able to perform in his nursery graduation. We didn’t think he would manage it but he did. We have decided that now we will just give him the choice. If he hates it, we can always go and pick him up.

So the Disco, for Johnathan, shows just how much he has overcome in the six years of his life.

I am amazed and proud of my son for tackling something I never thought to see him do.

Yes, there are still more areas where he needs help to flourish, but we can do this. I had a meeting with the deputy head. We talked about everything he was facing and how he was doing. Even a few months ago, I didn’t believe he would ever be a boy in a normal school, but he is.

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