Archive for the ‘National Down Syndrome Awareness Month’ category

It’s Your Paradigm That Counts.

October 12, 2011

October is national Down syndrome awareness month. My son with the extra 21st chomosome taught me about the word “paradigm.” My son with special needs. The one with global developmental delays. The non-verbal one. The one who’s IQ is labeled by psychologists as “not testable.”  The one called “oblivious” by his kindergarten teacher – taught me something that had never been within a stone’s throw of being included in my vernacular or lifestyle.

My Webster’s dictionary (yes, I’m ‘old school’) defines the word “paradigm” as “an outstandingly clear or typical example.” Dictionary.com defines it as “an example serving as a model or pattern.”

It tears me up to admit this, but when Hayden was born, I had called my parents to share the good news. During the conversation, I told my dad, among other things, that his first grandson would never pitch for the Yankees or play linebacker for the Trojans at USC. I was focused on the label of Down syndrome. I thought the easiest way for me to learn about Down syndrome (in order to teach our family and friends about Hayden) was to compare and contrast to “typical.” And that’s what I did. I was so wrong.

Until at 4 weeks of age, when Hayden underwent a PDA ligation, or heart surgery to us liberal arts majors. Hayden was braver than I was, and certainly tougher than anyone I’d ever met during his recovery. His perseverence was breathtaking. And he came through with shining colors. I began to see my son. He was Hayden.

He wasn’t defined by a label. He was so much more. At some point, we left behind the extra chromosome, and dealt with the reality of Hayden’s daily routine. It was what it was. Just as we all are, he is who he is.

Around that time, we learned the life-changing philosophy. From Hayden. Not a life coach or late-night pitch man. His life, and ours, is defined to those around us by our life view. And we had a choice.

Strengths-based vs. Deficit-based

We soon found that Hayden (and by extension, our family, each member of it, and, indeed, our whole life) could be described in one of two ways. Only two. It’s pretty simple. Strengths-based, or deficit-based. 

Because Hayden is largely non-verbal, it is left primarily to us (his parents) to describe him, his interests and activities. Early on, we did so to Community Centered Boards, doctors, therapists, family members and friends. We found that Hayden can be described in terms of things he cannot do (deficit-based), or his life can be described in terms of things he can do (strengths-based).

We found that embracing the strengths-based view made us feel as if we were being more true to Hayden. This was the kid who was fighting with grace and courage through surgeries, seizures, infections and every other medical malady one can imagine. He was loving and trusting his novice parents to make the correct decisions on his behalf. It was the least we could do to return the favor.

So let’s try that first paragraph again.

October is national Down syndrome awareness month. My son, Hayden, taught me about the word “paradigm.” My son with the great sense of humor. The one that loves music. The one that uses sign language, and loves to watch Signing Time. The one that loves to go to the beach to admire the ocean as it sparkles under the sun – taught me something that had never been within a stone’s throw of being included in my vernacular or lifestyle. He taught me to be positive.

Celebrating Becoming An Expert

October 7, 2011

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.

Celebrating The Need To Get Involved

October 6, 2011

October is national Down syndrome awareness month. A lot of hard work by some seriously talented and highly motivated parents, advocates and self-advocates has come together in various national programs and campaigns to elevate awareness and acceptance of people with Trisomy 21.

I’m grateful for their efforts. Just as I’m grateful to all of the families that have gone before us, educating family members and friends – then passing information and hope to new parents behind them. The mentoring that goes on in the disability community is something to behold.

For families of kids with Down syndrome, every day is Down syndrome awareness day. The extra chomosome touches every facet of our life with Hayden, my dude-cool 13 year-old son. From waking in the morning to bedtime at night, there are accommodations – as well as expectations. It’s our life. As such, every day in our house is Hayden appreciaton day.

Similarly, every day in our house is also Autism awareness day, as our daughter, DP, is on the spectrum. And yes, every day is DP appreciation day. So you can see, we’ve got some major celebrating going on, what with all the awareness and stuff going on. Seriously, we’re fairly well plugged in, and would walk on fire, water, or any combination of the two for our children. But like most parents, I celebrate some moments more than others.

This afternoon I ran a quick errand into our local natural foods market. As I was fondling the 49-cent avocados (my sole reason for stopping in), I heard an announcement over the P.A. system. “We have a donation at register six!” This was soon followed by, “We just got a donation of $20 on register three!” These announcements continued as I gathered the produce and stood in line at check out. As I was paying, the checker asked if I’d like to make a donation for “autism” today. I said, “No, thanks” and was on my way.

As I was dodging puddles in the parking lot on my trek back to the car, something just didn’t feel right. And as I started the engine, the thought crossed my mind. “That isn’t right! This is Down syndrome awareness month. Autism already had its day in the spotlight.” I found myself feeling irritated. Conflicted. Guilty. None of those are in my top ten list of favorite feelings. 

And as I weaved home through the drizzle and late-afternoon traffic, my reaction started to make sense. It occurred to me that I was irked that autism was taking the spotlight from Down syndrome. It bothered me that the “spotlight” at the food market was on autism. But it also occurred to me that it was the same thing that appears to be happening in Los Angeles in general. Not only today, or October, but throughout the year.

Autism Speaks is doing a great job. And I’m thankful. My family benefits greatly from their awareness and education efforts. TACA (Talk About Curing Autism) is also very active, and has forged some incredible partnerships within the media and community in order to spread the word and ensure that autism is positioned front and center. These organizations, and several others, have fully embraced and cultivated an active presence in social media circles, public and media relations, and in general, are keeping autism front and center. Generating a buzz.

So when I heard at the market that Autism Speaks has forged a relationship to raise donations and awareness of autism for the month, I was jealous on behalf of myself (selfish, I know), my son (who, in reality, doesn’t understand these things and  wants only to be loved by those around him), and the Down syndrome community in one of the largest cities in the country. My mind was racing, toggling the signs of silence: The LA Down syndrome group Twitter account is effectively inactive, as is it’s Facebook page. The web site, should you know the address you’re looking for, is pedestrian, but does list several events and activities. There is a Buddy Walk scheduled, but I couldn’t tell you a date or location. The LA model is a bit different. All participants pay to walk, can purchase t-shirts at an additional fee, etc. So for a family to participate, it’s a large outlay.

I’ve been fortunate to connect through social media with some wonderful people around the world that are linked by a connection to Down syndrome. My Twitter feed hums with notices and recaps of wonderful experiences at Buddy Walks around the country, uniting communities in acceptance and advocacy for our kids and families. I see great things going on, but most of all, I see people connecting. And I’m left to wonder, “Why not here?”

And so, my first action of Down Syndrome Awareness month comes clear. I need to get involved. I don’t have all the answers. I may not have any. But I have a keyboard. And a phone. And a son, who 13 years ago came into our lives and made all the difference in the world. Teaching us to tune into life in a different way, and reminding us to celebrate every morning and milestone. Happy Hayden Awareness Month.