Isolation

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One thing parents who don't have a child with special needs don't realize is how isolating having one can be.

What I mean to say is, when you have a child that requires special attention, it can impact your social life very dramatically, to the point that you become isolated beyond what is normally experienced in typical child raising. Let me explain...

When our daughter was an infant, she was in most ways, just like any other infant. We fed her, changed her diaper, held her to comfort and sooth her... things that any parent does with their new baby.

But when our little girl reached the age of around 3, she did not gain the independence that kids without an intellectual disability typically do. Well, she did, physically, but she didn't have the common sense that usually keeps pace with the physical growth and development.

She often would run off in every direction, without the sense to realize that there may be dangers that come along with the decision to abandon parental supervision and safety. Again, "normal" children do this as well, but for a child with an intellectual disability, it seems the frequency and stress of this kind of thing is intensified. (As an aside, we used to joke that the "wandering" gene must be located on the 21st pair of chromosomes, and since in a person with Trisomy 21 this gene is over-expressed, the inclination for our child with Down Syndrome to wander was in full gear, all the time. But I digress…)

What my wife and I really found difficult was the extra supervision our daughter required, even up until age 10 (she wasn't completely potty trained till age 8!). This meant we were often excluded from the social situations typically enjoyed by our peers. A group of neighbours would get together for a barbecue and all be sitting around enjoying a beer and we'd get only a snippet of the conversation before we had to run off to keep our daughter from running down the street. Or we'd be trying to visit with friends after church on a Sunday, but could never really engage with others as we constantly wondered, "Where's Erin? What is she getting into? Who has her?"

Part of our grief as parents of a child with special needs, was that, longer than is typical for most parents, we experienced an "isolating effect". This was also marked by the fact that as the children of our peers aged, our daughter was less often invited, or able, to be a part of the activities commonly engaged in by young kids (riding a bike, sports, etc.).

So, I would encourage people, if you know of someone who has a child with special needs, consider how isolating the challenges of raising such a child can be, and make an extra effort to include them in any way you can with the things you enjoy, and perhaps take for granted.