I think that most of us who have special-needs children feel an affinity to others in the “same”, or similar boats. You can see another parent with a special needs child half-way across the room, catch their eye, look at your kid, back at theirs, and smile. They will always, almost always give a smile (though sometimes a wistful one) in return. But why should that be? Obviously because we feel in some way as a community that is a bit set off from others.
Why do I say “set off from others? I will give an example. If I would do that same eye movement to my orthodox Jewish neighbor, she wouldn’t know what I wanted. (Since the whole neighborhood is orthodox.) But if in Denver airport I would see such a person (as I happened to on my why back to Israel 2 years ago), not only would she share the smile, but she would offer me part of her kosher lunch as well! (Because, being part of the “club” she knows that there is nothing worth eating that can be bought Kosher in the airport….)
So why should we special-needs “folks” feel so set off from others? I think there are several reasons:
-The negative attitudes that many “outsiders” have of kids with special needs.
- The stressful schedules, and dependence on schedules of others. (I remember running one Purim (a holiday) morning to have my daughter do part of an IQ test, because I needed it, and the only other available date was months away….) People who have not shared that schuedule are sometimes hard-pressed to understand.
- the needing to fight for what you should be getting anyway…
But I think that the biggest factor is the maturity that having a disabled child brings. The realization that the small things in life are small. The perspective. And the ability to view even small progress, and imperfect progress, as progress.
I once went to speak to a mother who had a new baby with Down syndrome. Her neighbors were not very educated, and most had never even heard of Down syndrome. This new mom was scared that she would lose all her friends. I told her: “I don’t know about your old friends, but you will be entering a community where each and every one of the women is really REAL.” (And, by the way, she didn’t loose her old friends, either….)
But, we should not let one of our communties isolate the other ones in our lives. I still feel part of the orthodox community, the “appreciate nature” community, the … well, any of the labels I apply to myself.
[This is Ricki, learning courtesy of Grandma (who is in back), to be part of the "appriciate nature" community.]
And if one of our communities tries to oust us because of our special-needs child, then we have to either re-evaluate how much we want to be in it, or do some educating………