The change

At some point recently my gorgeous baby boy turned into a little boy. This feeling that he is no longer my baby has snuck up on me. Did I blink and he changed? Or is it my attitude towards him that has changed?

I look back at his baby photos and no longer focus on how hard things were in the early years, but instead on the challenges we face today and how different they are from back then.

In those first few years if you took away the medical equipment and lack of tone, Nate wasn't that much different to other tots. I could give him a bottle ( kind of) and some mouthfuls of food that he would slop about messily. It was totally normal/ acceptable for people to give him a cuddle and hold him like a baby, to talk to him like a baby. 

And now?

He might seem to still be at the same developmental level as a baby, but you know what? He isn't a baby. Nate is a profoundly disabled little boy. Actually he's not that little either to be honest. People can struggle to know how to interact with him. I understand why. It can be confusing. But it's important to recognise he isn't a baby. I waffle on at him about everything under the Sun, conscious of the fact my non verbal son will never reply. It's unlikely he understands half of what I'm saying, but it's more age appropriate ( the baby talk went out the window a long time ago) and if you give him a chance he will reply to questions with sounds of affirmation. I thank intensive interaction at school for that. Most of his toys are of a sensory nature. Nate lost interest in baby toys which was good (they had started to make me feel uncomfortable) so we became a bit more adventurous in what we would buy him. We've Spider-Man lights in his room, and comic book wallpaper which is bright and colourful. It's all such a contradiction, however, I've just bought the most amazing bouncy chair for his birthday. It doesn't look like the baby version, but there's no hiding it's design origins. For his birthday this year ( his 5th) we are going bowling. Which he loves. This is a recently discovered accessible activity for Nate which we all enjoy ( mind I'm not entirely sure how he finishes better in games than me...) 

The other big change as he get older is in his medical issues. The first few years were plagued by scary hospital admissions each time he caught a sniffle. Huge amounts of oxygen would be needed combined with extra time on his BIPAP. Thankfully these occurrences are few and far between now he's older. However things that were more manageable with a small floppy child are now really difficult. Manic thrashing, sleepless nights, pain, 

honest.