The Lost Art of Living in the Moment…

I read a poignant blog post recently about holding onto memories of your child when they are long grown and treasuring them as a way to remember to how little they once were.

It brought a tear to my eye, but not in the same way as many other parents it would seem.

For me it was because hours earlier I’d been discussing with some friends who are also parents of children with ‘The A Word’ the perils of potty training when combined with additional needs.

You see Blue-eyed Boy is apparently fine with staying in pull ups until the ages of five, six, seven – who knows how long. But I’m not. I know I should be – I should take the relaxed point of view on things, I shouldn’t push it, I shouldn’t care. But I do.

Sometimes people who don’t have much experience of autism will say things about how nice it is that some kids with ASD take longer to grow up, because they need you for longer, you can keep them close to you like when they were very little for longer. And in a way that’s true, but in another it truly sucks.

When I think back now to all the things I took for granted with Mini-me, all the things I never fully appreciated because I don’t have the perspective I do now – that’s what really makes me cry.

I never appreciated how easy it was for Mini-me to learn to ride a scooter before autism came into my life.

I never realised the pride in teaching your child to look left and right before crossing the road before I had a little boy who simply runs out in front of traffic.

I simply took for granted the fact that life got a little easier day by day as she grew, as she slept more, as we needed less stuff in order to be able to leave the house before I had a son whose different brain activity means he has grown into sleeping like a newborn baby – and we have no idea if he will ever grow out of it.

I didn’t know that having my son eat a packet of raisins would become a huge cause of daily celebration because on some days simply getting him to eat at all is an achievement.

When I left my house I didn’t instinctively notice the level of traffic noise, the number of people, the smells and sounds that might trigger sensory issues for someone. And although I knew my little girl like the back of my hand I couldn’t always read every nervous twitch, every fearful glance the way I can with my Blue-eyed Boy.

I don’t shy away from the future for fear of my lovely boy growing up too quickly, I’m sometimes scared of looking too far ahead because I simply don’t know if he will grow and change in the same way as everyone else.

My greatest wish for him is to be independent, to have a job, to have a girlfriend – or boyfriend, to go to university if he wants, to enjoy the thrill of moving into his own place, to have a few drinks in the pub on a Friday night, to be accepted by his peers…

And that’s why, and I assume other parents of children with ‘additional needs’, try to be content with living in the moment. Because all we want some days is for our kids to untie those apron strings and fly…

To walk out into the world fearless and optimistic and full of hope – and not look back.





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