There's this "thing" going on in the world of special needs. It's more of an undercurrent at this point...a "one-upmanship" thing, and I'm not happy about it at all.
Because not only do some of the FRIENDS feel like they don't measure up in the world of their parents and siblings...they now feel like they don't measure up in their own world.
And we, as parents, start to feel like something is bad wrong with us, if our child is not somehow exceeding all expectations or preconceived ideas.
We are putting our Special Olympians, ambassadors, students, employees, and spokespersons...up against each other. We accept those WE THINK will fit in better in society, and we call them "high-functioning."
ARE YOU KIDDING ME?
We stopped for lunch at Braum's in Alma, Arkansas, one day in June. We had just picked up Joshua from Camp Barnabas. I noticed a man staring at us (we get that a lot...ha!). As we stood up to leave, he came over and struck up a conversation with Joshua. He told us that he had a daughter who had Down Syndrome and Autism. Jim said, "oh, really? What does she DO?" Meaning...school, work, any type of volunteer post, or some kind of adult program.
The man replied, "nothing...she does nothing." And he kind of shrugged his shoulders.
Jim and I said, "ohhhh..." and let our voices trail off. We both thought to ourselves, "well, how SAD," but here's the thing...that should be okay.
Because, we don't know them. We don't know their daughter's abilities, challenges, or fears. We don't know their struggles, or anything about the roads they have traveled. And it's not for us to judge anyone else, or tell them what has worked for us...what they SHOULD or SHOULD NOT be doing...what so-and-so is doing. We aren't the boss of them. As long as they are doing what is best for THEIR child and THEIR family, who are we to say anything? And, unless they ask us for suggestions or opinions, it's none of our business.
*I'm saying that regular people shouldn't do this. OF COURSE, people who are professionals, who work with your child or at your child's school...they probably should be giving you suggestions.
Because for every individual with Down Syndrome who owns a restaurant, writes books, paints pictures, wins medals, makes speeches, attends college, meets presidents, and travels the world (and there's NOTHING WRONG with any of that)...there are a thousand other, seemingly insignificant and unremarkable individuals, who are quietly living their lives at home...or IN a home; who need some help...or a lot of help; who love their family, and enjoy their friends. They may not hear or see well...or at all. They may not speak well...or at all. They may not be able to walk well...or at all. They may be confined to a wheelchair, or to a bed. They may struggle with health issues, shyness, selective mutism. They may live with severe anxiety.
Their lives are no more important or valuable than the "stars" that shine in our Down Syndrome community.
All lives matter. ALL of them. All of us.
This month is about awareness...and, I hope, acceptance.
"...not a single sparrow can fall to the ground without your Father knowing it...so don't be afraid; you are more valuable to God than a whole flock of sparrows." Matthew 10:29, 31