Oh what a birthday surprise

Every year, as our son Tom’s birthday on 11th November approaches, what should be a very happy time for us becomes filled with upset and tension. Like any other parents, we want to celebrate and make it a day to remember. However, we always seem to end up worrying whether his friends from nursery and their parents will be turning up to his party. We believe that this is not down to Tom being unpopular with the other children, but rather their parents’ misconceptions about us as a disabled mum and dad.

Last year, on the morning of Tom’s birthday party, a message was left on our answer machine from the parents of one of his little buddies, saying they couldn’t make it. An hour later they turned up. Had they suddenly realised they were free after all? Or was it the result of a guilty conscience?

Only two of Tom’s friends from nursery came to his party, despite us having sent out over a dozen invites. Moreover, the parents who brought them barely found time to acknowledge our presence, despite us having provided all the fun, food and free drinks. Quite often this sort of behaviour isn’t something that can be specifically pinpointed as discrimination, yet at the back of your mind you instinctively know that you’re being judged on some level.

Tom has always been a very active child, and is forever climbing about ... and indeed falling. In fact, when he was a toddler, a fellow disabled parent suggested we should put him in a baby harness attached to a lead so that we could stop him running away from us when we were out and about. Although this may well have worked, God knows what sort of parents we’d have looked like if we’d been seen around town taking our baby for a walk on a dog leash.

There was an occasion, however, where other people’s negative perceptions of us as parents could have had far more serious implications. One morning when Tom was about 9 months old, he woke up gurgling and babbling away as usual and peering at us through the bars of his cot. In those days Adele used to push him around the house in his pram, as she wasn’t able to both carry him and keep her balance at the same time. As she turned her back to get the pram, we heard an almighty thud, immediately followed by a piercing cry. He’d somehow managed to climb right over the side of his cot and fall onto the floor. We just couldn’t forgive ourselves.

It so happened that Tom’s Health Visitor was due to come round to give him a routine check-up on this particular morning. When we explained to her what had happened, she checked him over and reassured us both that he was okay, and that all babies take a tumble from time to time. However, she also advised us not to take him to the hospital as, in her words, we’d have had the social workers down on us like a ton of bricks.

So if we’d done things by the book and taken our son to be checked out, we’d have been patronised and possibly had judgements made about our parenting abilities; yet by not taking him, we ran the risk of being accused of neglect. From our perspective, this is pretty much a no-win situation.

In truth, having two disabled parents has probably broadened Tom’s outlook and exposed him to issues that other children his age don’t experience. For example, the other week we went to a restaurant which had a step to get in, and Tom took it upon himself to tell off our waitress for not having a ramp for his daddy.

In short, it’s frustrating that our roles as parents are not more widely recognised and respected. People seem to generally assume that our son looks after us and that we couldn’t possibly be taking care of him. This means that we’re forever conscious of being observed and judged, which in turn can make us feel like we have to prove ourselves.

Anyway, this year Tom himself chose to have his fourth birthday party at a local family-friendly American diner. This time we just invited our friends’ kids instead of the children from Tom’s nursery. He had a great day, and the people who came actually talked to us as well as him.