The wheelchair has been great. Pushing him in it is much easier than the buggy he was too big for. And sometimes it helps by providing a quick explanation to strangers when he has challenging behaviour. I suppose because with a wheelchair, disability is quickly visible. But it took a while to get used to having it...
The sad thing is I don't even feel confident anymore going to friends' houses with the two of them. I can't sit down and leave them to wander and I can't follow them both when they go in different directions. Most friends don't need stairgates anymore or don't have to worry about things like hot drinks being grabbed or breakables being within reach.
Of course, the vast majority of people are well-meaning, but, unless they have personal experience, it can be difficult to know what to say, how to react to the news. There are several things that people will say to parents when they hear of their child's diagnosis - here are some examples and suggestions of things to try instead!
Now that Brody is nearly 5, I have finally got used to the fact that Global Development Delay (GDD) doesn't mean "may catch up" for us. It's forever. And because he is still primarily undiagnosed, despite an autism and epilepsy diagnosis (as well as a few others), GDD seems to be moving on to a new "catch all" term - learning disability.
A child who is mentally 12-14 months old in a four-year-old's body is normal to us. But it's difficult for others to understand when his disabilities are - at first - invisible. Because he appears to them to be a typical four-year-old boy. I suppose, apart from the occasional what ifs, this is the hardest part. When other people get it, it's truly a real tonic.
When it comes to pass-remarkable comments to do with my parenting, I've tended to let them go in the past (okay, I'll admit I may have fetched my imaginary voodoo doll once or twice...). Let's be honest, pretty much all parents encounter them every so often, be it for giving in to a tantrum "too easily" or co-sleeping on a bad night.
My 20-year-old son has multiple health issues, and learning difficulties. He therefore needs 24/7 care. He lives, term-time, at an outstanding specialist college. He is looked after by a fantastic team of carers, or facilitators, who come from a whole range of different places, including England, South Africa... and, of course, Eastern Europe. Poland is high on that list.
Imagine a scenario where that tiny little human life you created receives an earth shattering diagnosis. The doctors have no information about what it means or how it will affect your little one. Your family is left at the crossroads. You don't know where to go or who to turn to. What help will my child need? How can I get it? Where do I get information? Who can help me and my family? Why me, why us?