Anika’s Blog

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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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autism

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.

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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.

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Dealing with Transitions with a Child on the Spectrum

Transitions. A word that fills every parent of an autistic child with dread. They know the nightmare that can ensue when they want that child to move from one activity to another.

There is no best formula for you can do transitions.

You just have to try whatever has worked in the past and if it doesn’t work, see what else you can add in to try and ease the transition for them. Some children respond better to timing, while others need to be told there are these many activities before this transition comes.

Sometimes, no matter what you do, if the child on the spectrum is really struggling, they will not respond in a good way. I know that when Johnathan reacts badly, it’s not because of me, but because of the fact that he is finding the day really difficult.

However, often what they do or say can impact you in a bad manner.

I try so hard to remember that it is Johnathan who is having a bad day and that I am just the recipient of the problem he is struggling with. Sometimes you know what has caused the problem – like maybe they are tired, or hungry or frustrated or overwhelmed with sensory issues and just can’t handle what is going on.

When you have an understanding of what they struggle with it is much easier for you to deal with. If you know there is a situation they will find hard to cope with, you can find things that will help them go from one activity to another with less stress on them and their system.

If it is big transitions, all you can do is prepare them as much as is possible.

Give them the tools they need to be able to handle things in as easy away as you can. Explain to any others that could be dealing with them the things that will help and support them through this big change in the best way possible.

Transitions for a child on the spectrum are never easy. They find it difficult, but we as caregivers are the advocates for our children and if it means doing things that are hard for us, we will for their sakes because we love them.

Love is the motivator that will help us try and make things as easy as possible for them.

On learning to handle smaller transitions, the bigger ones will become easier, too. We love our children and want to do the best we can for them, so take courage and try again, because we are the people that stand up for them day after day and are their safe place and the ones they rely on.

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