Tuesday, May 03, 2005

Dear person(s) who ask me, "Would you change them if you could?"

I think there is a fine line between acceptance and resignation.
17 months ago I would have answered differently. Before we knew how to help our HFA dd and before we knew it would get better, or at least different, I know I wanted a "cure."
And now, as we prepare to have her twin assessed for ASD, I have a different mindset. We have a support system. We have found some techniques to help us all understand one another much better that have worked wonders for us. I have different expectations. It is all just so different.
Like many others have said, I would strip the anxiety and fear and anything that is painful away so that they could be free to be their exceptional selves without all of that encumbering them. I wish I could know the things they cannot tell me. I wish I could gather up every impatient moment, every time I was embarrassed by them and apologized for them when they were helpless in their responses to the world. I wish I could take captive every indefensible frustration or thought. I wish I could take back all the sensory misery I exposed them to. I wish I had known that they had GI issues.
I have no interest in making them into something they are not for the sake of conforming to this world. I want to provide the opportunities for them to pursue whatever it is that makes their souls sing someday. I think that I have an obligation to teach them what is expected of them in certain settings. All of us have to learn codes of behavior. I would be remiss as a parent if I failed to instruct them in basic manners, consideration of others, spiritual matters, and self-control, no matter their neurological design. And if I need to enlist professional help to do that, then I will do so. If they desire friends, I will help them learn how to build those relationships, but if a more solitary life is satisfying, I don't think I would force a busy social schedule on them. If their friendships don't look like what I am accustomed to, but they are healthy and mutually edifying...that is fine with me. I don't care one bit what the world at large has to say about who I run with, what I believe, or how I look and I can't imagine applying a different standard to them.
Right now they are so little, I have no idea what their futures hold. We just want to equip them with the tools they need to get to where they want to go and the opportunity to express themselves for who they are. Hopefully, along the way they will become unfetterd by the uncomfortable aspects that might be obstacles for them to achieve their dreams.
But all this is how I feel now, 17 months later. At 12:40 am on May 3rd. Who knows how I feel in a few months, a few years, heck a few minutes. But I do know I never want them to feel unsatisfactory in my eyes, not for who they are. They are not what I expected, but they are just exactly what I want.
sincerely,
mommy to abby & emma jean

post script:
Both within the ASD community and without, people ask it a lot. It is a loaded question in the ASD community. Especially parents who think we use ABA as some kind of torture in order to turn our childen into submissive robots. And some autistic adults who feel like they were abused in the name of therapy and unacceptable to their parents and society at large. It is hard not to feel on the defense, but Jimmy and I know what we've done for the girls up to now have been the right things for them. We're free of too much second-guessing since we're not the head honcho of this little corner of dysfunction junction. Thank goodness.

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