Not a little boy anymore

I’m really not sure when it happened but the dude is the most definitely not a little boy any longer. As I sat drinking coffee this morning I looked over at him snoring peacefully in his wheelchair in his uniform ready to go to school, and the realisation dawned that my tiny early baby will very soon finish year 9 of high school and go into year 10.

He no longer has the rounded features of a little boy, his jawline is becoming far more defined, his chest is getting broader as are his shoulders. Gone is the puppy fat that used to make him so snuggly.

In some ways it's absolutely heartbreaking; his life is so very different to what I had hoped for him - he's not able to go out on his bike like most other 14 year olds or even consider dating (which I’m quite sure he would excel at given that he has been a flirt pretty much since the day of his birth).

At the same time considering this child of mine was given maybe a year to live, the fact that he is 14 and heading into his penultimate year of high school is nothing short of miraculous. It is however quite unsettling when your child has barely entered their teenage years and you’re having meetings about preparation for adulthood, discussing guardianships and how people will need to assess your child to see if they are capable of making their own decisions.

Everyone who knows the dude is fully aware that he understands everything and is very capable of making his feelings known.

However, being nonverbal and with a movement disorder that means he struggles to use communication aids, it makes this very difficult and he can get extremely frustrated extremely quickly.

The fact these processes have to start so many years in advance should tell you how much work needs to be put in place to prepare for these changes. I’d be lying if I said I didn’t find it utterly overwhelming. It’s also a reminder that his dad and I are not in our early 30s anymore; we are now closer to 50 than we are to 40 even if neither of us act it.

We have started to consider the possibility of residential college for our son’s post-16 education. He craves his independence, he wants to spend time with his friends and he wants to do things without having mum and dad constantly there. Not having my baby at home every day after school will be quite a wrench, but we owe it to him to give him every opportunity to be as independent as possible.

We can't stop the passage of time. Parents of young people with complex needs have the same responsibilities as parents of neurotypical children to make sure that our kids can live life as fully as possible. Not just the lives that other people think that they’re capable of but the lives that our children themselves wish to lead. Even if stepping back and allowing them to spread their wings seems almost too scary to imagine, we owe it to them as well as to ourselves.