"Daddy read it..."

It's hard at the moment to have any clear idea of what I am doing because my head is so firmly buried in the sand. I'm so fixated on the new possibility of Fragile X that I have lost sight of the bigger picture, not appreciated or blogged the incredible work the Montessori has done with his IEP (individual education plan) and just generally ignored or at least not acknowledged how the NHS and LEA plans are finally coming together with a wealth of support and options for him.

I haven't been ignoring Tokoroth though, I've just been ignoring the problem.

Normally I make allowances for the specialness and read one book to him and a different book to Little M. Tokoroth loves his books. This is his favourite:

But I'm always impatient to read the Beast Quest stories to Little M. We are up to book eleven now:

I have, in the last few weeks, plonked them in their bed and just read Beast Quest. As you might expect Tokoroth took very little notice, played distractedly or flicked through his own books. To engage him, well, to keep him quiet so Little M and I could read in peace, I used to show him the pictures and look at him as I read the story and, at times, he almost seemed interested. He was quieter at least. Without speech I have no idea of what he was really thinking.

A week ago a funny thing happened. Tokoroth's mum is a bit more patient than me and had been reading his books to him before I went in with Beast Quest. I heard her ask him what book he wanted and almost fell over when I heard him squeak "Beeast Queest" shortly followed by "Daddy reeead it".

Bloody Hell. And now it's every night. He curls up with his brother, squeaks his request for Beast Quest and lays quietly, attentively and extremely contentedly usually falling asleep after a chapter or so.

I have no idea if he can follow the story or whether he has simply adopted this as a routine but I am loving this new development and dare to dream that he understands the story and is just as hooked as his brother and I.

The power of books and the wonder of reading are a true gift.

Knowing Me, Knowing You.

It might be a parent thing. It might be a 'me' thing. It was the same with his little brother. When he was a baby I used to worry that something would happen to me and Little M wouldn't 'know' me, that I'd just be a name, a photograph but not a memory.

As he grew he into a lovely, lively, little boy we talked, we played, we got to know one another and we continue to shape each other every day.

I no longer have The Fear with him.

I have it with Tokoroth though. I worry that he will never know me, that we'll never build that relationship, that if something happens to me we will never really have spoken, never really have learned of each other or not in a way that would stem this fear.

Before Little M could speak I kept a diary of my early days with him, documented our moonlight strolls when I took him out in his pram, I added photographs of us, when he was a tiny baby, watching the sun rise over Spitalfield's market on a Sunday morning, so that if anything happened he'd know that we did stuff, he'd know that we'd spent that time together and that could help seed some memories.

Different but Amazing.

As I struggle to apply the same process to Tokoroth I am reminded that when you are a parent or carer for a child with special needs you have to accept that the rules are different and so it's time to quite pandering to The Fear and just enjoy the amazing but different times that we have.

The memories will surely follow.