Thursday, March 28, 2013

Too Close to Home

It's been a really long time since Down syndrome made me cry. Sure I have the occasional Pity Party for One and I am sometimes reduced to tears over the relentless NEED associated with parenting any child, but I've moved on from any sort of grief over Pacey having been born with an extra chromosome.

I'll be honest and say, I normally don't read the majority of stories in the news about people with Ds. The feel-good stories about a young adult being *allowed to play* in an important game or being voted homecoming king/queen or whatever don't actually give me the warm fuzzies. I've learned that, for me, I can't read about and internalize many of the less positive stories because I simply don't have it in me to worry about things before they are relevant to us and our son.

After seeing many references to the story about Robert Saylor, however, I read it. Although I didn't read everything written on the topic, I feel like I read enough to have an understanding of what happened. I certainly read enough to make me sob.

This story hit way too close to home. That young man could so easily have been my son. Although I cannot possibly place myself in his brain in that situation, I can envision Pacey deciding that he wanted to see that movie again and needing a great deal of time and patience to help him understand that either a) that just wasn't possible and he'd have to accept that, or b) he could absolutely see the movie again but we would need to walk out of the theater and buy another ticket. It can be very hard, once he is in a particular train of thought about something he desires to help him break out of it.

I also believe my son would never hurt someone intentionally, and the thought of him being considered a threat is ludicrous (again, acknowledging that he's only six now and Robert was a grown male). But I can see him feeling so overwhelmed by a situation he wasn't given the time to comprehend that the only way he felt he could make himself understood was to lash out. To throw out an arm or to push someone who appeared threatening away from him.

One of the most crucial pieces to understanding my son is to know that he requires extra time to process. That if an average response time is three seconds, he may need ten or he may need more. He needs time to understand the question or issue and even more time to formulate his response. He may need questions rephrased, or concepts broken down into smaller piece for him. This is important in school, in socializing, and in teaching him discipline and appropriate behavior at home.

I am in no way blaming the aide that accompanied Robert for what happened; I wasn't there and I don't know what role he or she played in trying to diffuse the situation. But I think we all, as parents, hope that one day our children will be able to establish some independence from us, to go to a movie with an aide or a friend, perhaps to live on their own or with their peers. It is overwhelmingly discouraging to consider that there may never be a time I can fully trust in Pacey's safety if I am not physically present. We worry about predators, we worry about bullies and unkindness, and now I can personally add law enforcement officials to that list. I know that no parent ever completely stops worrying about the safety and well-being of any child, whether they have special needs or not. But this just rocked me to my core. I cannot stop thinking about that mother, getting this phone call and trying to process something so completely unfathomable.

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One of the reasons this has hit me so hard, I think, is that I've been struggling lately with some defiant behavior from Pacey. I know that a large majority of the time, he doesn't refuse something just to be oppositional, but he can't articulate why he doesn't want to do it, or what he wants to do first. I have a really hard time, especially when we are on a schedule and I need him to do something right away with allowing him at least the opportunity to process it, do it a different way or in a different order or whatever it is he wants. He is still small enough that often, when he refuses something, he gets picked up and relocated against his desire (and I do feel it prudent to point out that there are still plenty of times where he is given every opportunity to process, communicate and cooperate and he still refuses because he is six and inclined to be a pain in the ass on occasion).

I was sort of dreading this week of spring break and the large number of daylight hours to fill with no down time. But it's turned out to be a really welcome break from the daily battles around fulfilling our necessary routines to get everyone where they need to be. I've been really consciously trying to allow Pacey to do things in his time frame where reasonable, to force myself to wait those extra beats for him to process and decide to cooperate. It must be so immensely frustrating, after all, to constantly feel as though the world just doesn't quite wait for you to catch up (I realize I may be projecting, but I think it's a reasonable assumption here). And I see him responding really favorably. We don't start every day at war and I am so much more able to appreciate his - at times maddening - charm. I see him believing that his words have power and therefore making more of an effort to use them and make sure he's understood.

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I don't really know how to end this post. I don't think all police are bad. I don't know what the answer would have been in this situation. I'm not sure how we are meant to train safety officials to understand people with intellectual disabilities; I am the mother to one such person and it still feels like an impossibly steep learning curve some days. But I do know this: this story is unacceptable to me and the way it makes me feel will never stop affecting me and my life with my son.

1 comment:

Kerri said...

Oh my gosh, Jaida. I have goosebumps. I am so saddened. By this boy's death and that his parents lost their son. I question why the heck the aide would have left him unattended. Boo is only 4 and this story terrifies me. I could see her doing just that. Not wanting to leave and then acting out. How could the police not recognize that they were dealing with a person who did not understand?

While I do not have all of the facts. I do feel that just being acquitted isn't enough.

I hope their chief realizes that he must education his men. I hope that other cities see this and understand that they need to be education on how to minimize reactions rather than escalate them.

I have friends and family that are police. I in no way think they are all bad, either. But this story scares me.

I hope it scares them too. Thanks for sharing.