When Bella was very young I took her to lots of baby classes and toddler groups. There are 800,000 disabled children in the UK but Bella was always the odd one out, the only child with a disability.
I say it time and time again but all I want for Bella is to be accepted, for her to not be ashamed of her differences and to live a normal life as possible. Having friends, with or without disabilities is something I desperately want for her.
When Bella was very little her disabilities didn’t make much of a difference, we went to baby swimming classes, yoga and a baby class that was a mixture of physical, multi sensory and cognitive games I had attended previously with my son. I didn’t even mention Bella’s Cerebral Palsy to other mothers then, I sat her on my knee and we joined in with everyone else.
It wasn’t until she was over 18 months and obviously not walking that things changed.
We adapted certain things, there was lots of carrying and lifting but Bella enjoyed them. The hardest thing at this age is how much parents brag! I probably did the same with my son but it’s a battle of who’s done what first and how wonderful it is when they sit or walk, or clap or kick a ball – I had to switch off to any of that, although it was painful and hard for the first year.
At 2½ Bella did 15 hours at a pre-school a week. She was using a walking frame by now, the children didn’t really take any notice but on the second day of being there, when I was waiting to pick her up, I overheard one of the other mums suggesting that Bella shouldn’t be there as there was a special needs school in town.
I stayed quiet but it broke my heart.
Children in the pre-school were making friends but Bella was really struggling socially. She played with her brother at home so I knew she knew she was capable she just didn’t seem to be making the effort.
By the time Bella was 3, I had lost most of our friendships made from baby groups.
It’s nobody’s fault but I was finding it hard work. You can’t spend the day at soft play or in the park with a disabled child – yes, I take her to the park but Bella would want to keep up with the other children constantly and I myself couldn’t physically lift or carry her for more than half an hour. My oldest friends were wonderful at realising we were more comfortable in our own home and visited frequently, however their children were all a lot younger then Bella.
When Bella started nursery school things began to get a bit better.
She started getting invited to parties. Parties are quite good in that they don’t last very long. We made the effort to get her to every party she was invited to so that people would see she was able to join in. Again, it involved daddy pulling and carrying around a lot of soft play, and because she is accompanied by an adult it can mean the other children avoid her.
She has now made a few friends, we make the effort to have them over to play and she seems happy. I do feel sad when I see her friends run off in the playground and she can’t catch up. They speak more quickly than she does and I can see the frustration she has trying to keep up with what’s going on.
I worry about bullying in upper school and I worry that she’ll feel like she never fits in.
It upsets me that she won’t ever get to go to a friend’s house to play, or have a sleepover or venture off into town when she’s older.
For now, we will keep going to the parties and having people over to play because she seems happy. I feel like we are in the easy stage and it’s going to get a lot harder because what 10 year old wants their dad staying with them at a birthday party?
If your child has a diagnosis of Cerebral Palsy what level of the GMFCS are they?