My first blog of 2023 and it's already February!
I've been away from the keyboard for a while. I never intended to take a break from writing, quite the opposite in fact. I've felt a little bit blocked when it comes to the blog. It has always been a place where I could work through my thoughts and feelings about this little life we lead. Ever since Noah started school, however, the rollercoaster we've been on for the last few years has transformed into some kind of gentle pleasure cruise, chugging along our daily routine with very little drama and a large dose of peace. For that, I am eternally grateful.
Noah has been doing incredibly well at school, he has built some wonderful relationships with his teachers and TA's, settled into the school routine easily, and has been working hard on all of his EHCP targets. I get to see videos of him engaging and having fun, even using a seesaw WITH another child, which I have never been able to get him to do before.
The successes are now beginning to leak over into our home life too. We've cracked a little bit of independence, and Noah can now almost completely dress himself with a little bit of guidance. (He can also UNdress himself at will which is slightly less helpful but, hey ho!). His little voice is starting to come to the surface, with attempts at more varied speech. The words are occasionally clear and almost always in context, and gradually, our wider family and friends are beginning to understand what he's saying. He recently stayed over at my parents where he was clearly understood calling for his grandad, "Gandan!". And just yesterday, after joining in and playing with other children, he advocated for himself by signing "finished" when he had had enough at the birthday party we'd been invited to. No meltdown, no tears, just a huff and "finished".
I couldn't be more proud of him, and the little man he's growing into.
Whilst all of these developments are blog-worthy, I've just been living in the moment and enjoying them. A steady stream of "look what Noah did this week" felt a little too much like bragging for me.
This week however, a programme came out that struck such a chord with me that it has poked a little hole in my writers block.
"Inside our Autistic Minds" on BBC2 with Chris Packham, I felt, was a brutally honest, witty and emotional account of what it's like to be different in a world where different is "scary". From the young woman diagnosed far too late, who'd hidden her true self her whole life to find acceptance, to a young man who's disability was undisguisable, destined to use an AAC device forever as he has no speech at all.
It was this young man's story that really hit us. He was so incredibly intelligent and profound. I found myself loaded with so many questions. How did he learn to read and write? How did he learn to spell? How infuriating must it be to not be able to say what you wanted, when you wanted to say it?... is that what it's like in Noah's mind?
I've always insisted that I don't believe there is an issue with Noah's receptive language skills. I believe he understands every that is going on around him, and most of what we say to him. This programme has made me more determined than ever not to under estimate him. A lack of speech does not equate to a lack of intelligence. Far from it. In fact, I actually think it improves it!
Since watching that programme, I've noticed a change in my perspective for the better. Not about how the world see's my child and others like him, but about the limitations of his future. I had originally settled for a simple dream that he could one day live independantly, with no expectations on academic achievements or career progressions. I wouldn't care if he was a bin man or a shelf stacker as long as he was safe and happy, and that is still true, but now, I believe that he can do and be whatever he wants to, no matter what tools he'll rely on to make himself understood as he gets older. I dare to hope for more. I refuse to slow him down, or hover over him in fear. I just can't wait to see what he can do with life.
Hopefully this is the start of more writing! I've missed it!
