This Week and The Many Many Questions of My Child!

I’m writing this while watching the England match….which I might add has completely bored me and so I started to think about what I would write about this week for my blog. Usually my son would ask a question and straight away I knew that question would be what I would write about but this week was different. A lot had happened in our journey and I found myself rather than knowing exactly what I’m going to write about, floundering. It wasn’t that my son hadn’t asked me questions because he most certainly had….many of them….questions such as

“How many days until I’m 7?”

We had had his actual birthday. Which went well. Very well. We kept it quiet, no visitors, just us, no birthday tea, just opening presents and playing with them. And that was enough. It had taken us 6 years but we had finally had a birthday without a meltdown. And the next day as soon as he woke up he asked me how many days until I’m 7. He loves a countdown.

“Is the tooth fairy real”
“Have you ever seen the tooth fairy?”
“Are my new teeth coming out?”
“Where are my new teeth now?”
“Why do teeth smell?”
“Can my tooth go back in?”

Yes he had lost his two front teeth on consecutive days and coped extremely well with this. But there were many constant questions.

“Are you coming to school today for your meeting?”

My parent led CBT course had finally finally finished and yes I had had my reservations about the content of the course but the 6 week course (plus a review meeting at the end so actually 7 weeks) had all been worth it when the lady said she was going to recommend my son go down the neuro pathway for ADHD. Although at times I didn’t think so, she had actually listened and understood what I was saying to her about my son. And she agreed with me. But every week when I went to school for the hours meeting I happened to bump into my son so he kept asking if I was coming to school. This had now ended though and I was relieved but also pleased that it was more evidence for the things I had always known about my son.

“What will I have to do?“
“Will the teachers know I’m not there?”
“How long will it take?”
“Can we go back there another day?”

And then we had had the biggie. A sensory assessment. Now this I had worried about so much. I had been recommended this group of sensory occupational therapists by a local charity and I had booked a sensory assessment for my son. This was the Full Motor ABC assessment which was a standardised test. It meant my son would go do these tests and games while I waited outside for him and I had no idea how to explain this to him. The OTs sent me photos of themselves and of the giant teddy they had, they also sent me videos of the place we were going to for this assessment which was super helpful. Normally I prepare my son for days before anything big happens but it had been his birthday and I hadn’t wanted to spend his birthday talking about this so when it got to the night before I knew I had to tell him and as soon as I started talking it just came out. We were going to for an appointment like a Dr’s appointment so that we could get help with things like clothes irritating him, noise irritating him, touch irritating him and school work. And he was happy with this. He’s extremely clever and very aware of the fact that he feels things differently. I was pleased about that because I want him to grow up knowing that even though he does feel things differently that’s ok. It’s ok not to like meat, it’s ok to not like McDonald’s, it’s ok to not want to be around lots of people, it’s all ok. So I think by explaining that we needed to find out about his differences made him feel better. And did we find out, we definitely did. And the results shocked me. Really shocked me.

I’ve always believed my son to be fairly well coordinated. He walked at 10 months old and has literally ran everywhere ever since. He rode his bike at 3 years old without stabilisers. He’s brilliant at sports, football, catching a ball, tennis, badminton, swimming. You name it he can do it, he’s almost gifted at these things. So I was not worried about that at all. But go for a walk with him and he trips over his own feet. He drops things all the time, he bumps into things all the time. He’s very clumsy but very coordinated at the same time. Someone make it make sense to me please!!!

Things like holding a pencil, he holds it strange, he doesn’t seem to have a dominant hand, he uses both interchangeably. He hates feeding himself, he will often ask me to feed him at 6 years old!! And sitting still and standing still just cannot be done at all. So I was interested to see if this assessment could explain the paradox that is my son.

And the results (although I don’t have the full report yet) were enlightening. Certain parts he did really well at but other parts he just could not do at all. This meant he was given a diagnosis of Developmental Coordination Disorder (otherwise known as Dyspraxia). This didn’t make sense to me because he was so good at sport. The OT described these as splinter skills. He had developed these skills that were far greater for his age, like walking at 10 months….is rare. That was a specific splinter skill that had developed outside of the usual development of motor skills. He had learnt to ride a bike very very early with no stabilisers but he still couldn’t walk in a straight line when asked to. He could catch a ball with both hands very easily but he wasn’t comfortable using a spoon or pen or pencil. My mind was blown. Absolutely blown.

The OT said my son was very clever and had come up with his own coping strategies but she said he would find school extremely difficult and this would get worse as school became more demanding. School have said my son likes to be first with everything, he rushes everything not caring about presentation or whether his work is right, he just wants it done. The OT said this is his coping strategy, he just wants to finish so he doesn’t have to exert more physical and mental toll on himself. Now I don’t think this diagnosis is the end of our journey it is just the start but this along with the recommendations from the CBT lady provided yet more evidence for our CAMHS referral. And more importantly it provided more evidence for being able to get my son the support and help he needs within school.

So as I am sat with England on the TV completely underwhelmed by their performance I look at what we have achieved over the last week and I am completely overwhelmed with a whole multitude of emotions that I quite frankly don’t know how to sum up. Relief, sadness, grief, pride and exhaustion all rolled into one. There still wasn’t light at the end of the tunnel, I’m not sure whether there ever would be but there was little chinks of light slowly guiding the way.