I think that there, at least in my book, are a few sacred things in life. For example, single mothers, single fathers ect.. Since entering parenthood as a father of three boys (one autistic and one being diagnosed the same) I have realized something. I think being a parent to a special needs child or children is a sacred thing. I actually realized this when I was younger. A friend of mine had a little brother with downs. It was big eye opener for me.
What do I mean by sacred? I mean there are some things you just don’t mess with. I will speak for myself only (but I suspect many of you feel the same). Being a parent to a special needs child (in our cause autism among many others) requires us to live our lives in stark contrast to the way typical families live.
Again, speaking for myself, our family doesn’t let many people into our lives. We can’t let just anyone in because our kids are extremely trusting and easily exploitable. We have to protect them from the people who would take advantage of them. Sadly we have lost many family members and almost all of our friends because either they never understood or we learned they can’t be trusted. People have to understand that we can’t go out a lot of times because we can’t just get a sitter. It’s not easy to find someone to watch our kids. People take it personally and eventually the invites stop coming and the friends stop calling.
We have also made the mistake a few times now of trusting the wrong people. It seems no matter how hard we try some people still get through. This has an impact on the whole family. The kids don’t understand and honestly neither do we. Why would someone knowingly misrepresent themselves to us? Don’t they realize the impact this has? Or why would people who are supposed to be family constantly put themselves before their special needs grandson or nephew? As painful as it is we have to make tough choices sometimes. The integrity of our family will always come first and by family I mean my wife and kids. They’re all I can afford to worry about.
I always wonder why people would seek to make our lives more challenging then it already is? Forget Lizze and I, what about the kids, they never do anything to deserve this. Some might say it wasn’t done maliciously but sometimes I really wonder. Elliott Richard and Emmett John will never know some of their grandparents, aunts and uncles. Gavin however, knows the loss.
We always consult the therapists and doctors before we have to make a choice. We are concerned about the impact our decisions will have on our kids. In every case our support system has agreed with our decision to discontinue contact. It’s the best and safest thing for the whole family. We exhaust all options prior to making this decision. But when you have special needs kids they there are rules in place for a reason. No one has the right to undermine us as parents and knowingly put our kids in harms way.
Our support system continues to shrink. However, Lizze and I are very lucky that my family has always been there for us. They don’t always agree with or understand our decision but they respect them. They have never lied to us and have proven time and time again that they are trust worthy. They always do what’s best for the kids and try to learn as much about their respective conditions as they can. Some families don’t even have that.
For families like ours trust is everything. If you are lucky enough to earn it treasure it.