We managed to get our pumpkins carved! In the second photo, Malcolm is dancing to some music with his Mr. Potatohead. Today is the second to last day of 31 for 21 and thought I would comment on a serious subject...
No one likes to feel judged simply because they happen to be the parent of a child with special needs (which could happen to anyone). It is particularly disappointing when it is members of the medical community doing the judging. There are two examples that really quite bother me when I think about them.
The first occurred when I was standing in a line up and overheard a few other moms chatting. One woman was pregnant and they were talking about her being almost 40 and having a child. Someone asked her about being worried about birth defects like Ds, and the pregnant woman replied that, since the screening had not shown signs of Ds, and because she did not smoke or drink excessively, her doctor had reassured her that her chances of having a child with Ds were very small. No doubt this doctor meant to offer reassurance to this woman but she did not choose her words carefully enough - this woman was absolutely convinced, and was spreading the word to others, that Ds could be avoided in some cases by lifestyle choices (which is completely false - there is no evidence that Ds is caused because the mother (or her eggs) have been exposed to particular substances). Apparently, some people believe that mothers like me get what we deserve because we haven't been living wholesome enough lives.
The second example is even more troubling. We came to know a family with a child with Ds who had much more complex medical issues than Malcolm - she was in hospital a lot and was receiving various treatments and therapies. She was diagnosed with a disease that was caused by some of the drugs she was being given that put her at increased risk of a particular type of injury (I'm being deliberately vague so that no one reading this story will be able to identify the family in question). On one break in treatment when the family was at home instead of in hospital, the child did suffer this injury and, of course, the family brought her to the hospital for help. The particular department that treated the injury had full access to the diagnoses of the child and the fact that this type of injury was likely to occur, but nonetheless chose to call community services and report a potential case of child abuse.
The family is quite sure that if this was not a special needs child, the hospital would not have reacted in the same way. There is a stereotype out there that parents of kids with special needs are more likely to abuse their children. I did a quick search though a medical journal database (PubMed) to see if there is scientific evidence to support this. It was difficult to find many studies (which probably means that few studies have been done). Of the few that I did see, some had a very small sample size and so their conclusions are not particularly robust. There were a couple that were broader but these did not conclude that all parents of kids with special needs are at increased risk of abusing their kids. They concluded that those parents already at risk of abusing their children (a small subset of the population) were somewhat more likely to actually do so if they had a child with special needs (I didn't make a note of references but if someone really wants to know contact me or leave a comment and I'll find them again). So there doesn't seem to be any really overwhelming evidence to support the stereotype.
I think it's really unfortunate that the hospital doesn't have better policies to make sure that profiling of this nature doesn't occur. This family had been doing well under really trying and traumatic experiences and they didn't need the humiliation of an investigation of their parenting skills on top of everything else (because they were in hospital at the time the investigation was ongoing, there was no privacy or confidentiality - all of the nursing staff and other staff involved in the care of their child knew about it). Parents of kids with special needs are all too aware that this stereotype is out there and it's very disheartening to think that we need to be worried that when we seek medical care for our child, instead of going into a supportive environment we may be going into an environment where people feel the need to scrutinize us extra carefully for signs that our child needs to be taken away.
I never imagined the incredible bond I would form with Malcolm and could never, ever imagine hurting him. I have never met a parent of a child with Ds who seemed to feel differently. And yet there are other people who, apparently, think we are blameworthy of something. I try not to let this bother me and assume that only a small proportion of people actually think this way, but I do think it's important for everyone to recognize that it's out there. If you ever encounter this, hopefully you can help set the record straight.
Mary Ellen
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