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It Actually Does Take a Village in Special Needs

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I remember when Hillary was First Lady and she wrote the book It Takes A Village, which was about a community's role in raising children. Like anything the Clintons touched, it was fraught with controversy. Some of it political, some of it from a down-home, supposedly common sense point of view that conflicted with this idea. At that point in my life it had no real meaning to me other than that I was surprised that such a positive-seeming concept could cause such a stir. My focus, without a doubt, was how crazily contentious our country could be over the most innocent matters. It was kind of disheartening, but it had no direct effect on me. It wasn't until recently that I started thinking about the "it takes a village" concept and applying it to my own life. This is when I realized that it is amazingly spot-on and I'm even more astounded that people could find fault with it as a point of view.

We were at a birthday party for one of my daughter's close friends when I started considering how important people beyond one's family can be towards raising children. This was the most basic party imaginable. It was at the birthday boy's family's home and there were only two other families invited. My daughter has serious learning disabilities, and we've been to many birthday parties for classmates and friends that have been challenging because she can be very affected by various sensory stimulation. And, since most birthday parties are stuffed with excitement, loud music, joyful screaming and such, she typically has had trouble enjoying or even enduring these events. This result is made worse by the fact that she usually looks forward to these gatherings with great anticipation.

At one point, she developed a sensitivity to the birthday song even though she liked hearing it in anticipation of the party. When sung at the party, she might get very upset. Because she has communication issues, we could never quite figure out the reason. Ultimately, we would usually walk out of the party during the song and come back afterwards for cake. Of course, this was disappointing for my daughter, but certainly better than her having a negative and visceral reaction to the song to the extent that we might have to leave the party.

This particular party had some of the usual excitement with kids running around, balloons, cake and presents, but it was mostly unstructured, with the kids just bouncing around and playing. My daughter's sensitivity to the birthday song seemed to have disappeared of late but, happily, for this party, it didn't matter. If need be, I could have asked our friends to skip the song and they would have done so with no real need for explanation. In fact, knowing them, they would do anything to make her comfortable and happy. Their son has his own learning disabilities, as does one of the girls from the third family. At one point, we were all sitting at the dining room table, enjoying some pizza and salad, and I surveyed the scene and just felt so happy to see my daughter a part of this loving and accepting group. To see all the kids gathered together eating (or not eating) pizza in their own, somewhat unusual, ways was quite wonderful and funny.

The shorthand that's evolved amongst these three families is exactly where I see the "it takes a village" concept in action. One of the intricacies of having a special needs child is all the damn explaining that's necessary. On one level, it's simple; A little kid at a birthday party may ask why my daughter doesn't like the birthday song. That one is easy to tackle. I explain that it makes her sad for some reason, and that's why we may leave the party while it is being sung. A far more persistent situation occurs with well-meaning friends who kindly invite us to family-oriented social occasions, but oftentimes cannot seem to understand that we, at this point, cannot participate the same way as most of the families in attendance can. For example, we've been invited to New Year's parties a number of times, and the concept is that the adults will drink and celebrate while the kids will play together in a playroom or finished basement. The reality for us is that, for now, our daughter just cannot participate with the other kids without us being there to supervise for a variety of reasons. It's not like our friends don't know about our daughter's issues; I think that it's so foreign to them, as they have only typical kids, that they can't even conceptualize how a simple and friendly invitation can be a very difficult thing for us to accept and execute.

Of course, you always want to be invited and included. I think it's always nice to be asked. And, I'd feel far worse if the invitations stop coming. However, it's just so exhausting having to explain again and again why our family is a little different and just can't do things the same way most people do. I'm not complaining about our friends and I don't have unreal expectations about what insights they should have. I'm just confessing that many times, already exhausting scenarios are intensified with, admittedly, innocent and well-intentioned questions.

So, to be at a birthday party for a really amazing little boy that my daughter is just crazy about and not to have to explain to anyone why she's holding her hands over her ears while she bops to the music is just heaven. To see my daughter so readily accepted and encouraged in every way by a group is just an amazing feeling and her smile and manner show that she's as comfortable at our friend's house as she is at home. I'm still keeping an eye on her, as are the other adults with their charges, but there's a familiarity and communal vibe that is palpable and it blends with the bourbon I'm sipping to give me a warm and fuzzy little buzz.

I suppose the initial negative reaction to Hillary's It Takes A Village was the feeling that, as a concept, it took responsibility away from the parents and is some kind of metaphor for big government taking care of everyone -- the latter explanation being so cynical that I can't really comprehend it. As for my tiny little space in this expansive world, I'll take all the generous acceptance and attention my little community can provide. It doesn't replace my family's responsibility in any way, but it adds to our lives and, more importantly, our daughter's life as she is accepted, challenged and engaged by her environment.