My son, Troy, is almost 5-years-old. When he was born I knew no one and nothing about Down syndrome.

I was hungry for any information I could find about Down syndrome. I spent the first month of his life on Google (bad idea, by the way). I quickly graduated to national conventions, advocacy groups, and now specialized training in special education law.

Secret Facebook groups and specialized books taught me all I need to know…Or so I thought.

Nothing can replace trial by fire. Living life with someone who rocks an extra chromosome gives you a front row seat to the docudrama that is Trisomy 21. Troy has taught me so much about how outdated stereotypes and low expectations can warp your perception of disability.

But living with a preschooler with Down syndrome often reminds me of the saying “It’s hard to see the forest for the trees.”

For a while now, I’ve been searching for ways to steal a glimpse into Troy’s possible future. I really want to see “the forest.” One way I’ve done this is through a communications workshop with adult self-advocates. Simply talking and interacting with adults with Down syndrome on a regular basis has taught me so much about what our future may hold and how to plan for the best.

This led to an opportunity, from our local Down syndrome group’s Executive Director, to talk about the impact of our communications workshop on a local radio show.

Walter (bottom left) with MVDSA Executive Director, Willie Cox, and I at iHeart Radio

The natural pick for my co-interviewee was Walter, a 45-year-old iHeart Radio lover!

When we showed up to the radio conglomerate, Walter already had long-time friendships with every disc jockey, knew which of the 7 radio stations they were assigned to, and the exact times they each went live. Everyone hearts Walter!

I worked in radio for some time during college, and I came to appreciate the intimacy of the medium. You have to capture that emotion and authenticity the first go round, because your listeners can’t rewind or reread your story.

A common rally cry in the disability community is “Nothing about us, without us!”

Without Walter our story of advocacy would be flawed. We spoke with DJ, Kim Faris, about needed services and jobs for individuals with Down syndrome. Walter nailed the interview. He gave our radio interview the authenticity and emotion the audience will remember.

He was direct: “Hi, I’m Walter. I have Down syndrome and I’m proud of who I am.”

Not to mention, funny: “107.7’s DJ, Chris Davis, promised to pay me if I mentioned him today.”

I like to imagine an expecting or new parent with what seems like a scary diagnosis randomly tuning in just as Walter is proudly talking about his job. I know I would have loved to hear Walter when I was in the throes of Troy’s first few months.

At 45-years-old, Walter did not get all the great services Troy receives through early intervention and inclusive education. Still, Walter thrives! It’s so important to remember what you’re actually advocating for sometimes. Just like Troy, Walter deserves a life of self-determination and choice. We really have to listen to our self-advocates at all stages of life to understand their needs and how to pave a better path forward.

You can listen to our radio interview live in the Dayton area on July 9th starting at 7 a.m. on any iHeart Radio Station: 107.7, 103.9, 94.5, 99.9, 104.7, and 106.5.

Or you can listen online here.

From Left: DJ Kim Faris, MVDSA Executive Director Willie Cox, Self-Advocate Walter, and I

I want my son, Troy, to take advantage of every opportunity available to him. When it comes to education I’m exploring all avenues: public, private, and even homeschooling. So what about vouchers?

Educational vouchers as espoused by the current administration seem like another opportunity for students with disabilities. Parents can take federal dollars away from their child’s public school and use it towards a private school of their choosing.

“We have to do something different than continuing a top-down, one-size-fits all approach,” Department of Education Secretary, Betsy DeVos argues.

More local control, more customization of education. Sounds good, right?

The problem revolves around federal laws that protect students with disabilities. The Individuals with Disabilities Education Act (IDEA) requires PUBLIC schools to provide a free and appropriate education (FAPE) to students with disabilities in the least restrictive environment (LRE). These students are also guaranteed an individualized education plan (IEP) under federal law.

Asked yesterday, during a Department of Education Appropriations Hearing, whether or not DeVos would stop private schools taking federal taxpayer dollars from discrimination she said: “states should decide whether students taking vouchers are protected by special-education laws.”

This is a boon for private schools. They get federal taxpayer money and they don’t have to worry about the federal government holding them accountable.

Truth be told, many public schools do a poor job following federal special-education laws.

But here’s the bottom line: parents can always hold public schools to account if they’re not following the law. There’s always recourse through due process and courts. And federal courts more often than not have ruled in parents favor. As DeVos said there may be no such recourse for for parents taking federal vouchers to a private school under her plan.

To me this is unacceptable. I don’t know about you, but I don’t want my tax money going to private schools that disregard federal law. All the while, public school funding is expected to take $1.9 billion dollars in cuts under Trump’s proposal.

Since DeVos’ controversial appointment hearing, I knew this day was coming. I knew vouchers were on the horizon.

To minimize the damage in my mind, I had lofty hopes that DeVos would reveal some magic plan where all kids with disabilities could use vouchers and still be protected under IDEA…because they are using FEDERAL TAXPAYER DOLLARS at these private schools. I now realize that’s just wishful thinking.

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‘Seeing the Forest For the Trees’ in my Son’s Future with Down Syndrome