Ok, let me give some back ground for those not familiar.
Thirteen years ago this coming December my youngest son was diagnosed with cerebral palsy, turns out that is a monumental life changer. Sure there’s the obvious things like therapy, doctor appointments, equipment shopping, being broke all the time because you have to basically be home for him since there’s no real child care available for him and add-on to the fact that you can’t work so it’s difficult to pay for all the added expenses that go along with it, I’m sure you’re getting the picture.
All of that obviously goes along with raising and loving a child with special needs. That’s not what I’m writing about today, what I want to discuss is the secret, hidden part of the life changer that goes along with having a special needs child, the social isolation.
At first everything goes along like normal. You’ve got this baby and everyone looks at it and knows it’s a baby and they tell you how sweet your child is and then suddenly one day they stop and look at your child and you can almost feel and see the change. They can see that your child is no longer a baby and yet he is still being fed, dressed, changed and physically supported like one. Your friends pat you on the back and tell you how awesome you are, how strong you are in comparison to them because there is no way they could ever do this. And you know that they are coming from a good place, but after the thousandth time they tell you this it not only becomes stale and empty but you start to wonder if they view your lovely child as a burden, as something you have to suffer through instead of love and adore. They don’t get that he’s just a child, one that differs a bit but really deep down is just another child.
Without really intending to, you start to pull away. You just don’t want to hear those words or see those looks in their eyes anymore.
And if they have their own children they stop talking to you about them. They don’t want to make you feel awkward when their child reaches a milestone or accomplishes something that your own child may never be able to and suddenly they don’t want to share with you because they don’t want you to feel bad or regret that your child may never reach that goal in their life.
And you try to explain to them nicely that your goals for you child have altered in a way that they can’t understand. You no longer wait with bated breath for that first step, now you waiting for that moment when your child is able to lift a spoon to their mouth unassisted, or able to utter a single syllable word in a perfectly clear and understandable way. But they don’t get it.
So you stop talking with them. And you think that maybe you should meet up with other parents of special needs children, but they are as secreted and closeted as you are, not to mention the fact that they are widely dispersed around the city, province and, or country, which makes dropping in for a cup of coffee and perhaps lending or leaning on a shoulder when necessary, very difficult or even impossible.
Isolation. That’s the part of the diagnosis that the doctors don’t tell you about. It doesn’t happen over night, and it might not happen right away, but one day you’ll wake up and look around and wonder where all those people you used to be so close to have gone. And it’s not even their fault, because you know that you pushed them away as much as they pulled away.