By guest contributor Chris Masey
When our son Matthew was born, it was readily apparent that he was born with Down syndrome. Neither my wife nor I had a frame of reference for raising a child with a disability. The only thing we knew for certain was that we needed to focus on providing for his needs - whatever that might mean. We were so excited to get our bundle of joy home, but naturally we were also concerned about his health and his future. We were immediately referred to the local Early Childhood Intervention (ECI) provider by the hospital and our primary care physician within hours of Matthew’s birth and began services soon after. From the first time the case manager visited us to do the intake paperwork - we knew we weren’t in this alone.
It was incredible to watch Matthew grow and learn and respond to the therapies he was receiving. I learned how to mimic the techniques that the therapists showed me and integrate them into Matthew’s daily routine. Even though we only received four hours a month of support, those hours were critical to guide me and build confidence while helping Matthew gain valuable skills.
Looking back many of the days we received ECI services run together leaving fond impressions rather than the specific techniques we’ve incorporated into our daily lives with the exception of two visits that I will never forget and will always be grateful for.
Matthew was as strong as an ox and doing great in so many ways, but we’d tried everything to get him to crawl. Imagine me crawling around on all fours for days so he would imitate me with no luck - until the ECI case manager with decades of experience decided to take on the task. One of the most useful techniques for early childhood is stacking blocks. It is great for graduated movement, hand-eye coordination and following directions but Matthew would have none of that - a tower of blocks placed by anyone could grow to no more than two blocks before he tore it down. That was what we used to trick (I mean teach) Matthew to crawl. His desire to swat the blocks down was all encompassing. So, we let him knock a few towers down and began to move the blocks farther and farther away until he had to move himself forward if he wanted to destroy the four-block tower. And he did it. He moved and he moved again until he realized that he could now destroy all towers in Godzilla fashion forever. In a matter of minutes, an experienced therapist had helped us make progress when there was a roadblock. Just like with crawling, he was not in the tiniest bit interested in walking. Then one day, with Matthew’s ECI therapist’s help, we got Matt to stand to watch birds at the bird feeder on his own and then to take steps. It was a marvelous breakthrough.
I’m sure we didn’t know at the time how important ECI services and supports would be to us and how the services would impact my son’s life. Matthew is now nine years old, in third grade and is progressing and passing every goal he’s ever been given. ECI built the foundation for what he’s capable of and introduced us to the world of supports and services and the broader disability community.
Matthew’s story is not everyone's story. Not every child with a disability who could benefit from ECI is identified or able to access services. It’s time for the 86th Texas legislature to truly value ECI in preparing children with disabilities for school. It’s a program that works, saves money in the long run and makes children’s lives better. As the budget conference committee members deliberate, I hope they keep children like my son Matthew in mind and fully fund the House approved $72.6 million investment in ECI. Every eligible child with a developmental delay or disability deserves to access ECI- just like Matthew did.
Chris Masey, Advocacy Director for the Coalition for Texans with Disabilities, can be reached at [email protected]