It’s not all up to me – thank goodness!

Edward has hypermobile finger joints.

This is quite common for people on the autistic spectrum.

Things like using cutlery and writing with a pen can be really tricky for children to get the hang of if their fingers bend and grip differently from typical kids.

Didn’t we know it.

Edward still has the award for the kid who made the most mess ever at the dinner table. We did try and get him to use his knife and fork but with twin siblings only 3 years younger than him we had a fairly crazy table situation going on all those years ago.

I don’t remember when it happened but, by and large, Edward now uses his cutlery in a fairly conventional manner and I don’t have any worries about him creating mess and mayhem when we go out for dinner.

Edward also had great difficulty using a pen and pencil. His handwriting was barely legible and after he got his ASD diagnosis one of the recommendations was for him to be allowed to use a computer to do all his written work as he could actually type faster than he could write. He reported that his hands hurt when he wrote with a pen and he often produced the absolute bare minimum when it came to his school work. Once the teachers discovered he produced more work when he was allowed to type we reached a consensus that this was definitely the way forward.

On arrival at high school we initially thought we would just see how things went regarding handwriting as his writing by this time was more legible but it turned out he could not write fast enough to keep pace with the lessons.

The school had a small electronic notebook which they loaned to Edward and from then on, he has always made notes and done homework using this.

I was really busy with work in the Autumn as you may have realised from my reduced blog output. During this time Edward had to sit his mock GCSEs.

The day before they started I had a bit of a panic because I realised I had completely forgotten to discuss exam arrangements with the school.  I had planned to ask if the school would be able to make any special provision for Edward, such as using his notebook and I was really annoyed with myself for forgetting.

I ended up apologising to Edward for not making the necessary arrangements in time.

I needn’t have worried.

“Mum, it’s all sorted out. I’m using my notebook and am doing the exams in the room with the other special needs kids.”, he said very matter of factly.

I felt a weight lift. I realised that, at least in this aspect of life, I no longer had to carry such a mental load.

My son is learning to self-advocate and the school are meeting his needs without my involvement.

I can see a future where I can just be his mum and not his PA too. Bliss.

If you are still having to advocate hard for your own child’s needs I hope that one day you’ve become redundant (in a good way) due to the fact that they have started to advocate successfully for themselves.

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2 thoughts on “It’s not all up to me – thank goodness!

  1. We’re just awaiting Oscar’s EHCP but, like your school, his is amazing and is doing loads anyway. There are just a few things they simply can’t afford to do (social training, 1-to-1 assistance, laptop) without the extra funding from an EHCP.

    Oscar’s in year 8 and yr7 was a real struggle while school were working out what works best for him. He’s excelled so much though and, like Edward, is really starting to self-advocate – he even did a 20min YouTube video last summer talking about how autism affects him!

    • Pleased to hear there are other good schools out there – best wishes with the EHCP process. Hope school works out well for Oscar over the next few years.

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