I have taken some time away from this blog, due to a comment by on my last entry. I wanted to reply to the comment, but feel that I need an entire blog to do it.
First of all, despite the comment's negative air, I feel it is a good thing that we have this open forum in which to share our thoughts and feelings about the disorder. There will always be differing opinions on how to raise any child, and children with special needs are no exception. There is no wrong or right way, just what is right for each individual family.
Let me first say that I am not against people trying to raise awareness of Autism and how Autistic people of all ages should be treated. I am all for research. But I think there is a huge disconnect between displaying a ribbon, and being able to educate people. I wore an Autism pin on my work uniform and lapel for a year, felt like I was doing my part to raise awareness, was certain several people each day would ask about it, giving me an opportunity to educate them. In all honesty, the only people who mentioned it were people who already knew what the pin symbolized. And I can relate. I see bumper stickers all the time supporting "this" and "that" cause, and I do not have any desire to rush home and jump on the internet to see what it is all about. It just isn't in my nature or my tight schedule. In my (albeit limited) experience, I think that those who are interested or know someone on the spectrum, will seek out information, of which there is a wealth, and will take from it what they will. I do not see Autism as a disease or a horrible tragedy, I think my kids are brilliant and loving, and, like any parent, think they are beautiful exactly the way they are.
I used to speak for them all the time. When someone would try to engage them in conversation, I would promptly step in and announce, "Oh, they're Autistic, they probably won't answer you." I thought I was being helpful or letting them off the hook so people would understand why they weren't answering. But now I see that I wasn't doing that to make them more comfortable, I was doing that because I felt uncomfortable that they weren't answering. When I read the aforementioned book, it opened my eyes to what I was doing to them. We wouldn't advertise other conditions in the same manner would we? If it were diabetes instead, would I introduce them as my sons with diabetes? Doubtful. My kids, being older, are aware that they are not like others, that they sometimes don't have the words to express what they don't like, that they get kicked out of daycare after daycare because they don't behave like everyone else. They don't need a neon sign, or their mother advertising what they least like about themselves. It comes down to respect. Everyone has something about themself they don't want others to know, for my kids they have both been able to verbalize that they don't want me to tell people they are Autistic. It isn't fair to air out someone else's laundry, and especially kids, who already feel they have so little say in their life, it can be exceptionally scarring.
If slapping a bumper sticker on my car truly gave me the opportunity to educate people, I could see the merit in it, but for me, it comes at the expense of my kids' feelings, and at this point, would violate their trust. And I truly do feel as though it opens it up for judgement, not in a malicious way, but in a knee-jerk manner, the same way someone reacts to seeing someone wearing a turban, or seeing a car with a gay rights bumper sticker. It's not something most people will admit to, or are proud of, but there is a little bit of judgement in all of us.
As far as the parents of Autistic children being impossible to please, that may be so. All parents strive to have the best for their kids, whether it is healthier lunch options, no bullying on the playground, better books to choose from, or in-class aides that will help all children reach their potential. I agree, there is a fine, often contradicting line between recieving these (often vital) services, and having those services single them out as being different, and it is something each parent needs to decide what is right for their child. I have a friend whose son is on the spectrum, and has chosen not to have any special treatment in the school system; rather chosing to integrate him in with neurotypical children. She has her challenges, but that seems to be what works best for her. I am very fortunate that my kids receive services at school that have allowed them to keep up with the rest of their class. Honestly, what I want for my kids is to be happy. They are very aware when they can't do something like the others can; our job as parents is to give them the coping skills to handle tough situations and think of another solution so that, though they will always be different, they can handle it. I am very satisfied with the services they get at school, it is after school where I am appaled at the lack of daycare facilities/providers that offer care for children with special needs. That being said, I feel my energy would be better spent learning all I can about Autism so that I may go into these facilities and train the staff how to handle kids on the spectrum, and that is a decision I have made; that is my contribution to the cause. With one in every 58 boys born on the spectrum, these consultative/training services are more vital every day. And if it helps just one family to navigate their course a little easier, then I will have made a worthwhile contribution. It may take me years to reach the point of being able to live out that dream, but to me it feels very necessary.
It may be decades before researchers find what causes Autism, and decades more to figure out how to "treat" or avoid it, but I don't see it as a negative thing. My kids have a lot to offer the world, as does everyone on the spectrum, and I wouldn't change them for the world. I believe our creator does not make mistakes.
There will always be challenges in raising children, there will always be differences of opinion, and ideas and information will shift and change as we learn. The best we can do is treat people with respect, even if we have differing opinions. I don't feel that my opinion is always right, as it is often based on emotion and a little bit of logic, I am just as any parent, trying to give my kids the best I have to offer. Respect, dignity and trust should be part of the package between parents and their children. For me, that means not wearing a ribbon. It's not an attack, it's just personal. If we never give our kids any say, especially on something that effects them on such an emotional level, they will never be empowered or able to advocate for themselves.
As I have always believed, we try, until we find the way that is right.
