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.



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.



Literal Thinking & Misunderstandings

One of the difficulties that can be encountered is the literal thinking of an autistic person. I don’t believe there is anything wrong with their way of thinking. But I do know there are some people that do.

Having lived with autistic people for over 10 years now, I am pretty much used to the way they think. I can change my language to suit my husband and my son. I’m not saying I get it right all the time, but that’s ok. Nobody’s perfect and everyone has difficulties in communication at some point, no matter who they are.

However, Johnathan’s new school teachers are not used to dealing with his literal thinking mind yet.

He has misunderstood a number of things. I have been his advocate in explaining to both them and him the problems or difficulties that are arising.

For example, one of the things I am needing to sort out is the whole issue of drinking during the school day.

Now, most children would understand that they can drink. As it’s an ok thing to do during the day if the setting is appropriate. However, because there are certain times in the day that they cannot, my son has taken this as literally as he is not allowed to drink at school. So I need to get this settled for him tomorrow.

So life continues and we have issues that need resolving. This is and will be life with an autistic person. But do you know something? I wouldn’t be without the two people I love most in the world for anything. They mean everything for me and if I can help them, I will do everything in my power to do so.



Courage & Trust to Learn New Skills

Last night when Johnathan and I were leaving school, I thought he needed some playtime outside. He had got upset thinking something said was aimed at him, but Mummy discovered it wasn’t.

Right there, in the playground, but on the grass where the wheelchair couldn’t go was a play frame.

I thought this was a sensible thing to do because he needed something positive after such a negative time. He could let off steam with the other children. There were some bars you could climb, leading to a platform and a pole to go down. And then you could move along a wobbly bridge to get to the slide or climb up to the slide using a wall with footholds in and onto a platform to the slide.

So here he was, and he got one foot on the bars and couldn’t get the courage to get his other foot up. He came back and asked me to go with him, but I couldn’t with the chair. So he went to the wall and managed to get two feet up by himself, but no further. He needed some reassurance of a person standing behind him. And Lucy, one of the mothers he knows pretty well, was standing there waiting for her son, Struan who was on the frame.

So I asked her if she could come to stand behind him and help him.

And she did!

The first time she had to physically help him and she said she could feel his fear, but the grin when he got to the top and could go down the slide – boy, it was worth it!

The second time, he just had the comfort of her being there behind him.

His third time, he had her daughter Mirrin, encouraging him.

The fourth and fifth times he found the courage and did it totally alone and if it is possible, his grin was even bigger than before!

You see, Johnathan learnt an important lesson. He discovered that he could do something, first with support and then by himself. He doesn’t have a lot of confidence, so I wanted to give it to him for this situation. I knew that with Lucy there, he would feel more confident and be able to tackle it.

I am so proud of my big boy doing this. He has really shown courage at climbing the wall he was scared of. He has had 2 broken arms – at separate times and so he was worried about doing this, but he did it and succeeded.