Celebrating Becoming An Expert

October is National Down Syndrome Awareness month. My name is Jeff, and like my wife, I am an expert on “Hayden.” It wasn’t always this way.

Hayden was born 13 years ago, with an extra 21st chomosome thrown into the mix, leading the medical professionals to conclude he had “Down syndrome.” As parents, we knew nothing of parenting a child with special needs. Truthfully? As parents, we knew next-to-nothing about parenting anything. (We thought the West Highland White Terriers were prepping us for a baby, but found out the reality fairly soon. They were just taking us for a ride.) My children still believe I know nothing about parenting, but that is for a later date.

We were, however, resourceful. We would learn. Quickly. And my wife is a “connector”. Before we brought him home from the hospital, my wife had already forged a relationship with a mom of a twenty-something year old man with DS. This mom also happened to be one of the pioneers in the special needs community within the state in which we were living at the time. A beautiful mentoring relationship was born.

In addition to all of the typical baby “stuff” one comes home with from the hospital, Hayden came with his own posse. What newborn comes with his own posse? H was putting the “special” in “special needs” from Day One. We had the pediatrician, the cardiologist, the respiratory therapist and home health care nurse (that I can remember off the top of my head). He was discharged on oxygen, so our house had a centrally-located base oxygen unit, and literally hundreds of feet of tubing throughout so that we could access the whole house  and he would be connected at all times. It looked like a movie set.

We found the nurturing part was a breeze. H is a complete love. In addition to his heart condition, he was born profoundly deaf. His idea of quality baby-parent time was swaddled in our arms, sitting on a couch, gazing deeply into our eyes. That was right up my alley. Give me a couch, don’t ask me to talk and I’m in heaven. I could do this.

The medical part? Neither of us are what you would call “scientifically inclined.” Both my wife and I are liberal arts majors. In school I had an aversion to anything ending in “-ology” or “-istry.” However, we now had the little dude with his posse counting on us. We were determined to do it right. We’d do the “journalist thing”. Ask questions, research, ask more questions, more research, then put it all together. And we did. We gave all our friends and family members a book about babies with Down syndrome. Then we tore into internet research regarding infant cardiology and hearing loss. We devoured everything we could. Our tests were pretty cool – the specialists would launch into jargon-laced explanations, and we could follow along, and even ask intelligent questions. We were able to accept the PDA ligation at 4 weeks of age, because we understood where the cardiologist was coming from, and we understood the testing that went into it. (It is important to separate “understanding” and “being cool with it.” It was amazingly hard to give your 4-week-old dude over to the ER staff for heart surgery. But it worked, and the boy no longer needed oxygen.)

This process of questioning and research became our life. It allowed us to catch an Ear, Nose & Throat specialist in a bald-faced lie, and kept us deeply involved and relatively sane during a debilitating bout with infantile spasms, invasive treatment for major systemic infections and multiple reconstructive surgeries on his ear canals and mastoids in order to eradicate infection.

My wife’s mentor taught us early on that we would have to be the experts on “Hayden.” Our kids are unique, and deserve individual advocacy in each situation of life. We embraced that process, locked in to “Hayden Radio”, and have tried to never waver from the litmus test of “What is best for Hayden?”

As we were becoming experts in all of the medical fields early in his life, we were prepping for the on-coming confrontations with Community Centered Boards, school districts, and other professionals in his life. When we were told infants with DS do not need speech therapy, we cried foul. When we were told special ed ran on a different calendar than the regular elementary school, we cried foul. Our convictions have served Hayden well. Not that we always prevail, but at the end of the day, we can look at each other and know that we did everything we could as parents. And some days, that is the best you can hope for.

Happy Hayden Awareness Month.

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Explore posts in the same categories: Down syndrome, LA Down Syndrome, National Down Syndrome Awareness Month, Parenting

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