For 22 years, I’ve been telling you that October is Down Syndrome Awareness Month.

The first of those columns led to the formation of the Down Syndrome Association of Guam (DSAG).

Subsequent annual columns either highlighted the activities sponsored by DSAG during the month or talked about my journey with my daughter Deborah, who lives with the syndrome.

The last three years have taken a toll on our small group. DSAG still exists and our members are ever ready to help new parents who have children with Down syndrome. But we do so quietly, without punctuating the year with awareness activities.

“Awareness,” as I’ve explained more than once, is really worthless. But if you don’t know much about this condition, let me explain a few things about living with it on Guam.

Down syndrome — Trisomy 21 — is the most common chromosome abnormality in humans. According to the National Down Syndrome Society, in the United States, it occurs in 1 of every 772 births.

That means there are people with Down syndrome on Guam.

But our government does not see them.

Yes, they can immediately get services through the Guam Early Intervention Services. Unless they fall through the cracks by being born on a weekend.

Yes, they go to school.

But because “Down syndrome” is not a reimbursable disability, the unique needs of those with the syndrome are often overlooked.

And yes, they can qualify for services through agencies like the Department of Vocation Rehabilitation (under the tongue-twisting Department of Integrated Services for Individuals with Disabilities).

But getting those services is nearly impossible unless a young person has a loudmouthed militant mother, and sometimes that’s not enough. After my daughter fell through the cracks at DVR three times, I gave up. (At that point she was not well enough to hold a job.)

It was my dream to create an education and job training program for my daughter and her friends, but when meetings were suspended due to fear of a virus, those plans were also suspended.

Although many of our young people with Down syndrome are capable of holding jobs, the majority of them are not employed. Whatever they gained through schooling is being lost daily as they remain inactive and unchallenged.

When Deborah was placed in my arms on Feb. 19, 2000, my first thought was: “Guam doesn’t know what to do with Down syndrome.”

Despite two decades of effort, it still doesn’t.


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