A letter arrived last week. Faster than I thought it would. It takes at least two weeks to schedule a non-urgent appointment with a GP. And even though when E and I left the surgery it looked liked our GP was typing a referral for neurodevelopmental support, I wasn’t sure what the next steps would be.
E’s referral accompanied the school recognising learning difficulties. These are supported by the school. But E has other difficulties. So with our GP we have a referral. And now I have confirmed I am happy for a formal assessment to be made. It was so easy to tick the boxes. Physically.
E is my everything. He’s my baby who stopped growing at 30 weeks. He’s my baby who needed surgery for pyloric stenosis at ten weeks. And now, he’s my baby who needs neurodevelopmental support.
Big words for my tiny boy.
Words for a boy where so much of him is everything he is.
Which means I (and Mr J) question the form of support. How a line might be drawn between who he is and what any support might affect.
It’s not been easy getting here. And whilst we’re now ‘here’, it feels like a teeny step on a long journey.
Which might stop with no diagnosis.
Like my blood tests of last week it might just be an ‘all clear’ result.
But in E’s case we’ve passed the GP assessment.
I know what I’ve listened to since the boys began their education.
I know what I’ve not listened to because it’s been too much.
Because I know what sits behind this photo.
That E had been compliant for the time that past and the time that followed on the agreement he could wear my rucksack. That I had stopped taking photos of the poppies because no number of warnings to not touch the stand which held the rope stopped E from touching the stand which held the rope.
And yes, it may be because he’s 6.
I have been known to hold my head in my hands at meetings in despair. Whilst my head is on the desk. Unconsciously. I cannot hide frustration.
E’s eyes cannot hide focus.
I know from B that whilst it takes time to help him focus, once I find it I can keep it.
But not with E. E’s eyes dart everywhere, never stopping.
E’s thirst for knowledge is insatiable, and it’s beyond a journey, it’s like a rollercoaster as you try to hold on.
And E is my Bambi. Covered in bruises. And the truth is, he’s always been that way. We used to joke about it, before it just became a part of us.
I even joked with his teachers – “have you met my husband?”; and followed with “My mum used to call me ‘Calamity Jane'”; “I had learning difficulties”; and of course, “I’ll monitor his diet”.But of course for some reason I have two boys who love to eat well, who will walk two miles a day because that’s what the dogs need, and will sleep well.
Why can my son not focus? Why does he have to touch everything? And why is he so tactile? And so clumsy?
E’s school have been fantastic. A year of additional support has reaped so much progress, but not enough. It’s emphasised the difference- because after separating my twins, B also started with the same level of support. And now B’s will reduce.
And some days. Some days like Friday I hear myself saying the same thing to both boys: “Why do you have to touch everything?”; “What did I say would happen if you did that again?”.
Some days my six year-olds are the same.
But there are parts of those days where my six year-olds are different.
Where to start?
Confirming consent, it would seem.