Going where you never expected

One thought was dominating all others as I sat in my first support group for parents of children with disabilities: Maybe I should leave.

The group’s facilitators had just passed around an inspirational essay called “Welcome to Holland.”

It goes something like this: A family plans a trip to Italy and they’re really excited about all the fine art and wonderful food they are going to experience. Then something goes horribly wrong as they hear the flight attendant come on the speaker and say “Welcome to Holland.” Oh, the horror. This isn’t what they planned. My God, what will they do on a vacation in Holland?

Of course, they find that Holland is a pretty cool place, too. So, are you with me? In other words, if you have a child with disabilities, it’s not what you are expecting, but it presents a situation that can be pretty wonderful even if it is not what you planned.

OK, let me give Pollyanna a time out. I mean, seeing yourself buying maps in Holland because you are suddenly lost among the windmills hardly measures up to seeing your infant go through life-threatening surgery or getting a diagnosis that your son will never walk.

Sure it’s a different place from Italy, but I’ve always thought this hand out piece should be rewritten and called “Welcome to Beirut.” Now that would be a shock, wouldn’t it? All the other families are living it up in Italy, but you are in the war-torn Mideast. It’s bleak; they don’t even sell maps and you are trying desperately to understand a conflict that sadly appears to have no easy resolution.

This version more aptly describes my day when the lab calls to tell me they have to stick my little girl again because they lost her blood results. Or when my friend Tammy has to explain to another curious observer that, no, her daughter is not wearing brand-new shoes. They stay looking clean because she’s in a wheelchair .

Or my friend Laura, who didn’t get to hold her premature son Jason until he was nearly 5 months old, which turned into a lonely time because friends vanished when they didn’t know what to say. And then there’s Tonie, a single mom of twins who spends just about every minute she’s at home watching her 6-year-old son Griffin, who has autism, to make sure he isn’t running down the street naked or eating his feces.

I know “Welcome to Holland” is inspirational for some and I’m touched so many have shared it with me. What I’ve learned in support groups is that there is no right way to accept the fact your child is not typical. Some will cry, some will pray, others will spend hours on the Internet looking for answers. Others will look for humor. And, yes, some arrive in Holland.

The support groups, which are a collaboration between the Austin Independent School District, the Pilot Parent Family Resource Center of the Arc of the Capital Area and MHMR, will start up again next month and I will attend because I’ve become somewhat of an addict over the past two years. We all cope with this very different place we’ve landed in separate ways, but I know my friends in the group are always there for me on the days I feel alone in Beirut. And they’re the first to admit the tulips aren’t always easy to find. For a cynic like me, that’s very comforting.

For more information , call Tammy Mann at Pilot Parent, 512-476-7044. Groups meet Tuesday nights at Rosedale School, 2117 W. 49th St.

Sarah Barnes writes occasionally for the Austin American-Statesman about the joys and challenges of raising a child with special needs.

Sarah Barnes
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