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.

Disciplining a Child With Down Syndrome

One of the issues my wife and I really struggled with in raising our daughter was in the area of discipline. Disciplining a child without an intellectual disability can challenge and exasperate any parent at times. Throw in the "DS factor", and you have a real challenge on your hands.

The question I kept asking myself over and over again, was, "is she getting it?" That is, does she understand what she is being disciplined for? With a "normal" child, you have a reasonably good chance that the kid will pick up on why he/she is being scolded, or punished for an unwanted action. But with a child with a mental delay, I always wondered, and second guessed myself, whether my child was putting two and two together. And so I was never really sure my disciplining efforts were, 1) called for, and 2) effective.

I remember a time when we were visiting my parents, and the subject of discipline came up. I recall my mom making the comment that my dad (AKA Grandpa), in observing how we disciplined our little girl, felt that we were entirely too harsh on her. I would have felt bad about this observation, except for the fact that my mom (AKA Grandma), entirely agreed with us, and felt that our measure of discipline was very much appropriate.

After 17 years, we look back on the whole adventure and think, our discipline was probably just about right. Our daughter has learned what is acceptable behaviour, and what is not. She has learned that she is safe and secure in our love, but also has a keen awareness of what will bring a scolding look or a corrective word when she is out of line. She is well behaved 95% of the time, which is more than I can say for her 2 siblings. We still work on them. But then again, they don't have the years of experience their sister has.