Finding the right words

One of the unexpected joys of being a parent is that you always have something to talk about when you are stuck for chit-chat topics in social situations. Usually you will find yourself talking to another parent and conversation flows readily about each other’s kids. The rules of small talk between parents who are strangers strictly dictate that you must, without fail, compare notes on when each other’s child started crawling/walking/clapping/toilet training. If your child is not doing those things at the appropriate time then conversation usually turns to tips/techniques/advice/anecdotes about how to get there.

I can only endure so much of this before I feel obliged to mention that Wade has Down Syndrome and will do things more slowly than a typical child. I also feel obliged to mention it before the poor unsuspecting stranger in front of me really puts their foot in their mouth, I mean, I’d want someone to tell me! I feel ridiculous standing there keeping this highly relevant piece of information to myself but I always hesitate bringing it up because on the one hand, Wade is so much more than his diagnosis and I don’t want him to be defined by it. On the other hand, it’s still a huge part of who he is and a huge part of who I have become as a parent.

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Milestone Junkie

As with every other aspect of my parenting story so far, Wade’s developmental delay has me swinging wildly from graciously understanding the reasons why everything takes longer to learn, to tearing my hair out over why he can do some things easily and not others.

Kids with Down Syndrome are usually characterised by some degree of developmental delay. When they are older, this is usually known as an Intellectual Disability. The reason for this is an Intellectual Disability is a specific, clinical term that is determined by an IQ test. When children are not old enough to be formally assessed this way, they are known to have developmental delay. Developmental delay means that our children can learn and can develop along the usual trajectory but everything takes longer to learn and often requires some specialist help along the way. This usually affects all aspect of development including the physical, the cognitive and the intellectual.

Before Wade was born, I remember being shocked at the approximate ages that children with DS achieve physical milestones. I couldn’t imagine a 9 month old unable to sit up or a 2-3year old unable to walk. It completely floored me. Like a lot of things I read during that time, this kind of information is general and each child develops completely differently. Wade, for example, came out of the gates racing. His gross motor skills were quite good. He has low muscle tone but he was quite strong and active. I would put him on his back and he would kick his legs about and wave his arms. It didn’t take that long for him to lift his head during tummy time and other DS parents and medical specialists were very encouraging about how well he was doing early on. This is when you get your first taste of that tempting, intoxicating parenting drug….praise. You get a high, you feel fantastic. Nothing gets better than this. Continue reading