Why sending a special needs kid to a ‘normal’ school is so tough

"Sorry, could I have a word?" the words any parent - let alone a special needs parent - dreads hearing...

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Last Friday, in the cloakroom after school, Alice’s mother tapped me on the back. “Sorry, could I have a word?” she said. Then she told me that every day since Reception had started three weeks ago, my son Charlie had pulled Alice’s hair, and Alice was so upset that she didn’t want to go to school anymore.

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I was mortified. “I’m so, so sorry,” I said. To make matters worse, I was clutching two smelly bags containing Charlie’s pooey trousers which the teaching assistant had just handed me.

Meanwhile Charlie bounced up and down trying to stroke the woman’s furry gilet, oblivious to what she was saying.

My son has a genetic condition which, at this stage, involves developmental delay and being tiny. He has only been toilet trained since the summer, and still has accidents sometimes.

And we’re starting to think he has Sensory Processing Disorder, a condition which means he finds busy, noisy places overwhelming, and likes to play with, pull, stroke and chew things as a way of self-soothing.

Charlie is in many ways like any other 4 year old – he’s bright, friendly, active. He’s not profoundly disabled, so we didn’t consider sending him to a ‘special’ school.

When I asked his paediatrician if he needed a statement of special educational needs she laughed at me. So we applied for a place at our highly-regarded local primary school, and got it.

It’s only now, 4 weeks in, that I’m realising what a steep learning curve school is going to be for Charlie, and how much help he needs.

I hadn’t realised what a shift school would be for a child with extra needs, because I was used to nursery, where there were more staff per child, smaller groups and, above all, an emphasis on protectiveness.

Now, in reception, the focus is on independence: Charlie is expected to be able to change his clothes for gym, take himself to the toilet and generally fit in. School is big, hectic, noisy.

And it’s tough for him. He has been through so much more than the other children in his class; he has spent months of his life in hospital, has had five operations and the first two years of his life were sadly full of physical discomfort because of his medical problems.

Charlie tells me nothing about school apart from that he doesn’t like a boy who pushed him and said some mean things, yet he’s chatty with the other children and seems essentially happy, if a little unsure of himself. So hearing others’ accounts of him has come as a shock.

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When I spoke with Alice’s mum, I told her about Charlie’s disability and how we are trying to help him behave.

The teachers, I explained, had already told us that Charlie was pulling children’s hair, as well as biting and chewing their clothes, and just the day before I had sat down with the class teacher and school SENCO to discuss a strategy.

The fact is, it’s not as simple as telling Charlie to stop pulling hair – obviously we have tried that, and it doesn’t have much effect.

The key, I think, is for him to learn to recognise the feeling of being overwhelmed, and to have quiet places to go at school when he’s feeling over-stimulated. I’m also trying to get him specialist occupational therapy.

It’s a fine balance between expecting Charlie to behave well, as he should do, and understanding that he has genuine extra needs.

Thankfully Alice’s mother was understanding. I said I would of course tell Charlie firmly again not to touch her daughter, and tried to assure her that he wasn’t trying to be aggressive – if anything, he wanted to make friends with Alice.

‘I think Alice just wants to be left alone,’ the mother said.

‘Absolutely, of course,’ I replied, and apologised again. Worried that I couldn’t make Charlie’s behaviour stop overnight, I burst into tears after Alice’s mother left. Charlie’s teacher brought Charlie and me into the classroom to talk.

She couldn’t have been kinder. She said, “We know you don’t want to make excuses for Charlie because he has special needs, but the fact is, he does have extra needs which affect his behaviour.”

I was so relieved that she understood and that the school will do its best to help him.

We all want to avoid the other children thinking Charlie is trying to hurt them, because that is the opposite of who he is – the most affectionate, loving boy who throws his arms around friends for enormous hugs.

The teachers also said that Alice was happy at school despite what she had told her mother, and in no way was Charlie making her life hell, which was a relief.

The other children do notice Charlie is different, the teacher said. They ask why their baby brother can’t come to school, since Charlie is there and the teacher tells them Charlie is the same age as them. They are amazed.

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My parents have suggested Charlie might find it easier in a Montessori school, but I think Charlie can flourish in this lovely mainstream school if he gets the right support to meet the challenge.

I know from his previous delays that he will take longer than his peers to grasp school skills – like independence and social grace – but he will get there.

Over the weekend, I made Charlie a ‘tail’. I cut out ten strips of yellow and white felt and sewed them together onto a luggage strap which attaches to his collar. It sounds bizarre, but he needs a sensory toy to stop him reaching for the other children’s hair and clothes.

He told me he wanted a ‘tail’ like Alice’s ponytail, and this was my attempt to recreate it. Yesterday, after his first day at school with it, the teacher told me it worked brilliantly. Every time Charlie got stressed, he played with the ‘tail’ and calmed himself. I was thrilled.

This morning, I watched him sing with his class in the Harvest Assembly and then hug the boy next to him. Afterwards, the smallest child in the school and a little overwhelmed, he followed the line of his class out of the hall, chewing on his ‘tail’. Well done Charlie – we are proud of you.

 *All names have been changed

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