Tuesday, March 19, 2013

Need and want in the land of awareness..

~"You can't teach an old dogma new tricks"~ Dorothy Parker

We are a regular family...Like any family, we have good times and not so good..times when we are all together and times when the ups and downs of living our lives scatter us in a million different directions.  But, even when separated, we are always connected.  I adore this family of mine.

  As a mother, I see and raise ALL of my children equally. They ALL have the same rules-the same expectations set upon them. "Do your best-and most importantly-be who you are." I have four kids.  Each with their own very different and unique personalities-four wonderful kids..not three kids on the spectrum and one neuro-typical child..nor three "auties" and one "normie"..or any other "ie" ending cutesy kind of word.(what is it with that anyway?) Four kids-four human beings that we are doing our best to grow into adults. Labels aren't really necessary to us-unless of course we need services. Then they are of the utmost importance. Autism, other than as an explanation(to my kids) as to why things are sometimes more difficult or different doesn't really mean anything to my children. They are kids, they are part of a family and they are loved beyond words. This is what they know. Sometimes I wonder(when I look at the world) if I have made a mistake in guiding them to think this way.

  A few weeks ago, I had an person tell me that I was the best advocate that they had ever met in all their years of working in special ed. I tried to dismiss this..in fact it made me really uncomfortable. Believe me, I am not "the best"..not even close. There are too many days when I know I could be doing more...could be doing better. Those days when I just want to hang out drinking coffee..(and I do) Or, when I just don't feel like making a call..or showing up at school. (so I don't) Days where I would rather read a book than discuss anything to do with autism (so I go to the library)  No, I see myself as a regular parent. Doing the things(mostly) that a parent is SUPPOSED to do. I don't need a title-and I don't need (or want) praise.  What I would like is for my kids to get all that they need without having to intervene. I do not think that this is too much to ask.

  No, if anyone deserves accolades it is my kids. They are caught in a system-both in the real world and on line that is constantly trying to box them in. My children are more than their diagnosis. Some of them struggle more than the others. Not all of my kids may be able to live fully independent lives (as adults.) That does not make them less valuable (as people) then the kids who will be able to. Nor does it make me a failure as a parent-someone from whom they need to be "liberated" from. That is just the way it is.

 One of my kids wants to be a teacher.  Unfortunately, his lack of pragmatic language, and really, just the way he learns has caused him to be dismissed by many educators(there have been some wonderful ones-but not enough), administrators-and whole bunch of other professions ending in "ors". He simply doesn't fit into the system. So it is easier to just ignore him. To pass him on to yet another system-only to be ignored there as well. *sigh* And another one bites the dust...

 Autism awareness month is almost upon us-and I sit here thinking about how unaware people really are. Soon my Facebook wall will be flooded with all sorts of "My autistic kids are great!" all my kids are great-so you're preaching to the choir ..Or the activist type of "I don't stim-but when I go out with my friends, we flap in public to bring attention to stimming!" Are you kidding me?  That isn't activism-it's theater. My son owns his flappiness-thank you very much. It is his and it is real. I wish that people would stop co-opting his behaviors to try and make a point. How can I teach him that it is important that he "be who he is"-when there are people are pretending to be who they are not?   I wish we would instead concentrate on what is really needed. Services, supports,education and inclusion for EVERYONE on the spectrum-regardless of where they are on that spectrum.

Autism isn't a month it is lifetime. It isn't one set way-it is many ways. It isn't a light bulb or a tee shirt. Autism is all different shapes and sizes and colors and religions. It is different abilities and disabilities. But the most important thing autism is...is people. All different kinds of people. We need to respect that-to acknowledge it-to accept it. I fear that nothing is going to change until we do.

So, now that April is almost upon us and we are inundated with all things "awareness".. I think that I will just continue doing what I have always done. That is, to raise my children to do their best-and more importantly-to be who they are. That is more than enough awareness for all of us..