One thing I constantly struggle with in my quest to make a success of parenting a special-needs child is the challenge of indentifying where we fit into the world. Are we members of the special needs community? Are we functional enough to embrace the realm of the "normal" world? Does it even matter? Of course the simple answer to this dilemma is that we exist in both worlds to a degree.
I have to say I feel quite comfortable as a member of the special needs community. A lot of my associations have to do with people who are dealing with family members on the spectrum, as we are. These people have seen it all, and not much rattles them. Certainly nothing my child could do would make them bat an eyelash. There is bound to be a sympathetic ear, and someone will always have a story that can top your worst experience. You can't buy that kind of acceptance, and it's really worth a lot to me. Another thing I feel is an advantage about belonging to this community is that it gives Sam a safe environment in which to shine. People who are "like us" see Sam as a star- verbal, literate, upbeat personality. They are less apt to define him by his "issues".
There are, of course, negatives to it. The biggest one is that you usually have to go out of your physical community to make connections, so geographically you may not be able to be in the environment as much as you'd like. Also, there is a whole big world out there that is not included here, so at some point you have to come out of the protective umbrella and venture out into the world.
The normal world makes me uncomfortable on a lot of levels. Lately it seems to be getting harder, not easier. Back when Sam was 4 and did something like throw something, or run away, or lay on the floor in the post office, it was fairly easy to explain away to curious on-lookers. Now it's more of a challenge. My fear of not being able to handle the stares, rude comments, or rejection of "normal" people makes me gun-shy of trying new things. I often wonder (say, maybe 10 or so times a day) if I'm doing Sam a grave disservice by not exposing him to more "normal" world activities. Instead of signing him up for soccer on a town team, instead I choose to have him take swimming and golf lessons from STRIDE. Instead of putting him a cub scout troop, I choose to sign him up for a social skills group for special needs kids. Is this wrong? Should I be accompanying him to "normal" activites, knowing that I would have to be by his side 110% of the time to make sure it worked. Doesn't this defeat the purpose of the activity?
I know people with spectrum kids who spend very little time in the "special needs" world. Maybe their kids are just better equipped to deal with more "typical" activities than mine is. It makes me sad to think that Sam might be missing out, but then in nearly the same thought, I know I shouldn't wish for something that isn't possible.
Does all this matter? Most of the time I think I come to the conclusion that really it doesn't. What we need in this family is a healthy mix of the two worlds. I'm still struggling with getting out of my comfort zone and pursuing those kinds of "normal" activites that would be appropriate for Sam. If they are out there, I want to find them. In retrospect, maybe I've always kind of struggled with what was "normal" and what was "not". I used to feel not normal because I was so on-the-fence about wanting a family to begin with. Now I feel "not normal" because I'm not able to balance my life the way I want it. I think way back long ago, I tried to convince myself that there is not just one definition of normal. We as individuals can determine how we choose to live our lives, what paths we follow. If we choose to live an "a la carte" kind of life, picking from different communities, activities, friends, situations, that should be our choice. There are people who never choose to leave where they are most comfortable. I want to make the choice to keep pushing myself to walk out of my comfort zone and find the best opportunities, no matter which world they are in.
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