Why my child’s progress scared me…

Over the past year, kiddo’s development has fluctuated a great deal. For a very long time (and still now if I think about it) it seemed like one step forward and two steps back. But still, he was taking those steps forward and slowly but surely making developmental progress.Now you’d think that every time kiddo showed signs of progression I’d be throwing a celebration that would rival the sights and sounds of Diwali. Fireworks, lights, music, the works. But nope. In fact I was the complete opposite.

I remember professionals telling me to really celebrate these small steps as they showed great hope towards meaningful communication in the future. But I couldn’t. I just couldn’t openly celebrate these wins. Not yet anyway.

As the steps forward became more frequent I felt myself disliking them more and more. I just couldn’t work out why I felt like this. And then I heard it, my inner voice. It was screaming, “not yet kiddo!! Not yet!”. Not yet? I clearly wasn’t ready for him to make any progress at all. But why? 

I remember sitting one afternoon with tears slowly dropping off the end of my nose and into my afternoon cuppa. I was the world’s most awful mother. Was it that I had no faith in my child? Was it that I didn’t care? No. It was none of that.

It was fear. A fear that kiddo would show one moment of brilliance that wouldn’t be echoed again for months, and the healthcare service would use it as a way to refuse us access to the help we needed. I secretly hoped that my child wouldn’t develop because I was that scared that we wouldn’t get the diagnosis we needed, the therapies we needed, the support put in place. That’s what the healthcare system in this country had reduced me to. If you can tick a box on a form, even if the skill is demonstrated for one isolated second, you’re screwed. The box is ticked. He’s capable. No help. 

Now we have one of the diagnoses we need, my attitude is quite different! So much positive discussion is had with kiddo’s Dad. Lots of celebration with his SEN school. I feel like I’m finally becoming a mum. 

As for the diagnoses we don’t have, going private was our only option. But there’s a huge difference. If kiddo demonstrates a moment of brilliance in an assessment or appointment, we celebrate it, but then I’m allowed to explain that it isn’t a regular occurrence. It’s not typical behaviour. And I’m listened to, I’m believed. I don’t have to justify my thoughts, my reasons. I don’t have to fight.

But for the last three years of my son’s life, the assessment system has prevented me from celebrating milestones. From feeling the joy rise inside my chest. Of course I demonstrated huge positivity towards the kiddo when he did present a new skill, but inside the story was quite different. I was confused, I was terrified. I couldn’t let the system fail him.

I truly hope I’m not put in this position again as a mother, but I fear the inevitable. That one time in the future years I will have to play this game again. And I will do. For you kiddo.

Thanks for reading,

Danielle

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