A couple days ago I read a blog post on Motherlode on the New York Times.
I didn't read too much other than a mother of child with exceptional medical needs expressing the reality of the costs and how it is a societal faux pas to discuss those costs. Then I started reading the comments. I should know better than to read the comments, but I did. It was disheartening to read many of them. Including some arguing that it was a drain on all of society and that it should not be the parents choice on critical care in the beginning as all of society has to pay when the child enters, school, etc.
All I could think is this: how people view my child?
Our son has special needs and they are not as great as others, but they are there. They only became apparent well after his first birthday. He is smart, smiles so much and tells a wicked knock knock joke. Since he was born he has had appointments with neurologists, neuro-muscular neurologists, neuro-geneticists, orthopedic physicians, developmental paediatricians (and all the tests that go with them) in addition to physiotherapy, occupational therapy and speech therapy. We are so fortunate to have government health care and additional coverage. How we could have made it work otherwise is unknown.
However, there are still extra costs. The finances of the family dynamics. The things you need to plan for change. There are so few people you can talk to about it. The chances that you will find another family with the same issues are rare.
Contrary to some of the comments on the Motherlode, this is not bad, just different. It is a different set of parameters you live in, save for and spend on.
When you have a child with special needs everything costs more. Extra-curricular activities, camps, possibly your childcare. You make different decisions, that are just that. Different.
Yes, there are extra costs to the schools, the health care system, but our child will be a contributing member to society one day. He has a place in it, just like every other kindergartner. I would hate to think the only thing people see in him is the cost to their tax dollars.
It means they don't see how he helps others in class learn about differences. How he helps physicians learn more about unknown diagnosis, how he helps his friends paint a picture. They would not see the child who just earned the next colour of belt in Tae Kwon Do. The one who sings to his baby brother when he cries.
My child is more than the costs, but it does not change that they are there, and sometimes we want to talk all the realities of raising a child. Not just the typical one.
SUCH a lovely post, so well said. I cannot believe people left comments of that nature - perhaps they have no children of their own. I think every child needs plenty of help - from the whole community - and it's our job to make sure every child gets what they need. Only you said it even better :).
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