Feeling understood

Lizzie Deeble by Lizzie Deeble Additional Needs

Lizzie Deeble

Lizzie Deeble

I’m Lizzie, mummy to two beautiful boys. My eldest son, Sebastian, was diagnosed with Duchenne Muscular Dystrophy in October 2016 at the age of 2.5...

I remember the start of school in September so well from being a child. That mixture of nerves and excitement, the new uniform and new pencil cases.

The feeling of being able to start again.

But I always found change unsettling and I still do. I am the worlds worst military wife because I hate moving around, I hate starting again.

I dread both the beginning and the end of things. The middle is the best bit.

I had no idea until I became a parent that sending your child to school for the first time means that those feelings you had from being a child come right back, but they’ve mutated and multiplied.

I would argue that they multiply again when your child has complex additional needs.

This time last year, the journey to get Sebastian’s place at school had felt long and emotionally exhausting.

The meeting with our village school, a main reason for our house purchase 5 years ago, had left me in tears as it was very clear that they were not interested in “accommodating his needs”.

And frankly, “accommodating” was never going to cut it anyway.

He deserves so much more than that.

Having dusted myself off and got over my wounded pride that they didn’t see how incredible my son was, I found that the school in the village 10 minutes away could not have been more different.

After the battle over the EHCP with the endless, draining need to fully itemise every aspect of your child’s needs, which leaves your determination to be positive in tatters, Sebastian started there in September 2018.

I was so anxious about so many things.

So many things that many parents don’t have to consider, as well as all the ones they do.

I had huge concerns about whether he would manage mainstream school, and that even if he did whether it was the right decision for him.

Whether we had made that decision for us rather than for him. My worries were not whether he would learn to read and write.

They weren’t about his academic progress at all. I had two which topped the list. Would he be happy? And would he be understood?

I don’t necessarily mean understood in the literal sense in terms of his speech or his specific needs, but more that the complex mix of Duchenne and Autism make him a complicated little person.

I wanted him to be “seen” through all of that. I wanted to be sure he would feel the safety that comes from being understood.

When I think about him going into year one this September, I feel incredibly lucky. Because he has done much more than “manage” and his needs have been much more than “accommodated”.

His mainstream school have practised inclusion at its very best, celebrating all that he is and providing for the ways in which he needs more help.

I really do know that we are the exception rather than the rule and I appreciate it every day.

Sebastian has smashed through every single expectation any of us had for him, mainly because he has been so well supported, felt so safe and secure.

He has taught me what progress really means and how hard won it can be. And how much more it matters when it is.

He has taught me never to underestimate him. His school have taught me how much difference finding the right place can make.

So yes, he is understood. And yes, he is happy. And yes, that really is all that matters.


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