Being a parent of a child with special needs is hard. In fact, at times it just plain sucks. There is one bright side to all of this. Thanks to the internet I have made many new friends. Sure friends can be a term used loosely. Most of these people I will never meet. Yet honestly, I can not imagine my life without these people.
It does not matter where a person’s support group comes from, or where they meet. All that matters is that we, as parents find one.
Let me get this out there – I know some people don’t like the term “Special needs”, but face it our kids are not normal. they were either born with complex medical conditions or developed such. As a result of these issues you’ll find “our” kids often suffer varying degrees of cognitive impairments. The needs our kids have are special. A normal child doesn’t take a shitload of medications every day, or have a closet full of medical equipment. There are not many other names out there to describe kids like ours. So special needs it shall be.
Most of the special needs groups I am involved in are specifically related to the seizure disorders Rebecca has. Some are for the one she had as a baby, which is Infantile Spasms. She “outgrew” that diagnosis, and is now considered to have Lennox-Gastaut Syndrome. I stay a member of some groups for Infantile Spasms simply to offer support to parents of children newly diagnosed, as well as staying connected with friends I’ve made. I find a different kind of support in the group for Lennox-Gastaut. There I am more often on the receiving end, instead of the giving end of support. I connect with parents of older children and teenagers. Finding out what may be in store for my child is a huge help.
Becca has had seizures since she was 2 months old. She has always been delayed. I’ve learned a few things over the years. Nearly every other parent I’ve met along the way has the same fears. The same concerns are being faced over and over again. I chuckle every time the parent of a severely delayed 2 or 3 year old gets shocked by sudden odd behaviors. The terrible twos (and even worse terrible three’s), does not skip a child simply because they are delayed. The child is still emotionally that age. (Watch out mom and dad – 4 is far worse than 2 or 3 – no one warned me!).
As parents of special needs kids we all worry every time our child isn’t eating enough. We worry when their schedule gets off.
But chances are there is another parent out there who has been through the same thing.