Small battles

Today we got the message that I’d been expecting. Hector couldn’t go on the trip because of their staffing ratio. This wasn’t unexpected, we know how difficult he is when he’s out. So I was surprised at how much this hurt. Maybe because it felt like it was the first of many. Maybe because he’s so much easier than he used to be when he’s out. And it feels like this is not acknowledged. Unfortunately, there is very little support here at school. Though it should be said that his old nursery used to take him across the road to the aquarium.

After some wrangling, they agreed to get an extra member of staff to take him. But it does feel like everything is a battle. I think parents of neurotypical children do not appreciate the small everyday battles. It is a success for us when Hector listens for a moment when we give him an instruction. And that he now usually comes down when we ask him to. That he can wait for a car without going into floppy mode. That he can sit on a train for 10 minutes without being distracted. People think life for every parent of a toddler is hard. I don’t think they can appreciate what life is like when you can’t have a conversation with your child. How draining it is to deal with a child who really doesn’t follow instructions, not just one who has to be told 3 times, particularly when you don’t have family support. People want to tell you that this is normal when it isn’t.

We watch our friends with children the same age and it is so hard not to compare or to feel jealous of their interactions with their children. No matter how proud we feel of his progress it still feels like we are missing out.