Celebrating The Need To Get Involved

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.

The Numbers Are Staggering

I’m not a big fan of numbers. Never have been.

As a liberal arts major, math has always confused and confounded me. Professionally, I am in the field of marketing and public relations, where my view of numbers was forever shaped by an early mentor growling over a single malt in a smokey, midwestern press club, “Numbers never lie, my friend, but our job is to torture them until they tell us what we want to hear.”

This morning I read an Autism Awareness article BC (before coffee) by Todd Drezner that has stuck in my brain, shot through my body and refuses to give up its grip on both of my BC functioning brain cells. And it’s not the message, so much as the numbers, that are twisting me in knots.

The message is cool. Autism is hip. It’s hot. It’s now. I agree. My daughter is the coolest kid on the block. Not because she has autism, but because of who she is. I like hanging out with her.

I also think Down syndrome is hip and hot. My son is, as ESPN’s Stewart Scott would say, “Cooler than the other side of the pillow.” Not the extra chromosome, but my son. He is Carey Grant/Brad Pitt cool. His slightly mussed, surfer style hair, the way he saunters into a room. The way he communicates despite being largely non-verbal. (I, too, am largely non-verbal, but it only gets me in hot water with my wife.) He’s got a great sense of humor.

I totally agree with Drezner’s message. It’s the numbers that are killing me. I’ve heard them repeatedly over the years. Maybe today is the day I hit critical mass. As Drezner points out in his article, 9 of 10 women told they are carrying a child with Trisomy 21 (Down syndrome) elect to abort the pregnancy. Ninety percent.

But I believe the women are making decisions to abort based on bad, outdated information. Doctors are frequently brutal in their initial diagnosis for our kids. (They say they are just being graphicly real – not wanting to paint artificially rosy pictures. Yeah, thanks.)

Think about raising a child. Any child. There are no guarantees, never have been, no matter the genetic makeup. Yes, raising a child with Trisomy 21 is different, but completely do-able. As is raising a child on the autism spectrum. Yes, our son has come through several health-related issues. But he’s come through them, and taught me more about life while doing so than any other teacher I’ve ever had. To counsel a woman to abort due to a genetic anomoly is wrong on so many levels. In fact, the in-utero test could be used to give parents a “heads up”, a chance to research and plan, to get to know other parents who are already on the journey, in order to get ready for the ride.

I was born typical. So my mom didn’t get the warning that I would spend more years than not being selfish, self-absorbed, hurtful and bone-headed. My mother is a saint, but many (quite possibly 9 out of 10) would probably not choose to have gone through my darkest, self-created moments with me. Was I easier to parent than my son, or the nine other kids conceived at the same time as he that didn’t make it full term because of parental choice? The easy and honest answer is no.

I’m all for awareness. And it is with doctors and health care professionals that I want this newly expanding “awareness” to begin. Let’s address the attitudes of those in the health care industry, as well as the entitlement we as a people feel regarding our children (and babies). We, as a society, have come to a place where we believe we are entitled to “perfect” children. News flash…we’re not!

Drezner posits that autism is so generally accepted because it cannot be diagnosed before birth. Don’t get me wrong. I’m thrilled that awareness of autism is as general as it is. I believe my daughter is more generally understood now that she has a definitive label. But my deepest desire is that the national conversation be directed toward awareness and acceptance of all disabilities, regardless of age and specific label. It’s a conversation we can’t afford to ignore.

The numbers are overwhelming.

Aware of Autism

I skipped the traditional posting on Intergalactic Autism Awareness Day, not because I was taking a bold stand or that I was expecting my abstinence to create even the smallest of ripples across the cosmos. Like so much of my life, it was much simpler than that. I just didn’t know what to say. I still don’t. I’ve never known what to say. I just frequently don’t know how to untangle the joy, anger, guilt, sorrow, pride, love, defeat, success and confusion in order to share my thoughts in a manner that makes sense to anyone other than my wife (who after 20 years has perfected – and mostly accepted – the ability to interpret the various grunts and harumphs relative to the elevation of my eyebrows and make sense of what is going on inside my head).

I saw a tweet come across my Twitter feed that summed up my thoughts exactly. “Having a really hard time writing Autism Awareness Month post today. Feeling crapy (sic) & negative & not wanting to reflect that, but its what is.” Amen, sister.

My daughter is “on the spectrum.” We’ve known there were issues (over and above those which we knew of at birth), and we actually nailed the diagnosis by ourselves several years ago. My wife is an information data-mining machine. She had taken comments from various OT’s and PT’s regarding our daughter, and through exhaustive searches and countless conversations with other parents within the disability community, come to the conclusion that maybe we were looking at something on the autism spectrum, possibly Asperger’s Syndrome. We soon had a printout of characteristics and behaviors associated with Asperger’s from Johns Hopkins. Most of the descriptions fit our daughter to a “T”.

It is just over the past couple of years that we had the “experts” diagnose her. The first was an expensive neuro-specialist that handed us the exact same printout (from Johns Hopkins), saying, “Based on what you are telling me, I would suggest she may have Asperger’s.” Thanks, pal.

Most recently, the UCLA Center for Autism Research and Therapy conducted an evaluation over several hours, and confirmed the diagnosis.

I would rather write about anything other than autism “awareness” today.

Like maybe this year’s Redsox opening the season 0-6. Sure, they’re finding new and inventive ways to give games away, but hey, there are still 156 more regular season games to go, and obviously they’re just getting warmed up to lay waste to the other teams in the American League East. I love baseball because there is always tomorrow.

Like maybe the weather. It was sunny and mid-80’s in our burg-by-the-sea today. A perfect day to slip down the street to the beach and stretch out in the sand, with the methodic pounding of the surf as a soundtrack to pelicans diving for their dinner and porpoises occasionally breaking the surface for a breath of air on their journey to wherever it is that they go.

Or maybe even about our big black dog. The Newfoundland is bitter because I made her stay out on the shaded patio all afternoon. You can just see in her eyes that she’d unleash a “thank-god-mom-is-home-from-the-beach-to-let-me-in-the-house-to-sprawl-across-the-floor-in-my-favorite-napping-place” barrage if only she could speak “human.”

Any trivial subject would suffice. Any subject. But not autism “awareness”.

I’m keenly aware of it. So is my wife. It has been blasting through our lives for the past 11 years.

I’m aware of it and I feel differently about it at different times of the day. I feel every emotion known to mankind about autism on nearly every single day of every single week.

I’m certainly still in the grief cycle, still angry for how it manifests in my beautiful, wonderful daughter. There are other issues she faces, but autism is the driver of the train. I despise the trantrums, the raging that has torn at our family fiber over the years. Clinging to each other by our fingernails as OT’s and PT’s suggested remediation techniques, always followed by my daughter dissolving into yet another meltdown after returning home.

I’m pretty sure the people around us are “aware” that our family is different. We’re the ones with the kiddo with no impulse control, the one that addresses all beings as equal (regardless of age, stature or relation). The small child with the gargantuan vocabulary and encyclopedic interest in Meerkats (or Star Wars, or whatever the object of interest is this particular year).

People are aware we don’t go many places as a family because the sensory stimulation of a trip to the grocery store sets in motion the internal chaos within our daughter that more often than not ends in a screaming, wailing eruption. Church? The same.

Yet I love the times of sanity, when she lets us in. The smiles, the times she will slip her hand into mine as we walk down the street. Watching her play with her brother in the back yard, helping him any way that she can. I love the bedtime routine. Tucking her in every night. Watching her expertly comb a beach, in search of shells, crabs, and any other creature inhabiting the surf zone, tidepools or sand. She loves to do so many things.

Mostly, she’s my daughter, a beautiful little girl, who happens to have the label of autism. I love her. As I learn to support her as best I can. To help her through each day. To help us through each day.

And through it all, I need to be more aware of my daughter’s needs, hopes and dreams. I’d like our families and friends to be more aware that we’re doing the best we can to support and nurture our family, and frequently there isn’t much left in the tank to devote to friendships and extended family. I’d like healthcare professionals to be aware that we need concrete tactics explained in simple english to help my daughter. I’d like the regional center to be aware that supports and services are desperately needed for kids with Asperger’s. I’d like the regional center case worker to be aware that we need her to do her job, because even though we look like we have it together, I want to be sure we’re exploring all the options.

And most of all? I want our daughter to be aware that we love her. Because we do.

The First Foray

One wife. Two kids. Two dogs. How’d we get here?

We just started this journey. It was yesterday. A wonderfully sunny autumn in Seattle. Surrounded by friends and family from around the country. To this day we both still contend it was the best wedding and reception we’ve ever attended, thanks to those friends and family members.

We just started this journey. It was yesterday. Mark McGwire and Sammy Sosa were leading a blissfully ignorant nation on a late summer chase for the single-season home run record in baseball. It was late August. Sweltering summer days, backyard neighborhood barbecues at night. A boy was born, and needed a home. A place to be safe, a place to be loved, to grow, to succeed and be challenged. We opted in. No reservations. One look at his face, the first time I held him, after watching my wife rock him to sleep in the pediatric ICU. Whatever it takes.

We just started this journey. It was yesterday. Another new year had begun. A cold Colorado winter. A girl was born, and needed a home. A safe place. A nurturing place. A place of understanding, because no one could tell what challenges she faced. How could it not be us? We can do this. She is beautiful. One look in her eyes, one minute of holding this beautiful baby girl. Whatever it takes.

It’s today. I just looked in the mirror. We’ve been married 20 years. The boy is 12. The girl is 11. We still think our wedding was a pretty cool party (how can you have a cathedral, a bagpiper and smoked salmon – and NOT have a great party?).

The kids have taught us a ton along the way. We know more than we ever thought we wanted to know about Trisomy 21 (Down syndrome), Infantile Spasms, VSD’s, ASD’s, PT, OT, ST, MRSA, SID, and the autism spectrum. We’ve learned from doctors, speakers and writers from Boston Women & Children, Johns Hopkins, Children’s Denver, Children’s Seattle, and now, hopefully, UCLA.

But the best teachers? Other parents of kids with special needs. Other parents who see their kids and ours as kids first, labels later. It was a parent of a young man with DS who said, “You can do this.” It was a parent of a kid with Fragile X that said, “Come with us, we’ll teach you.” It was a parent of a kid with autism that said, “You’re one of us, teach with us.”

I’ve avoided writing for the better part of 12 years. Because I’m scared. Of being wrong. Of finding out I’ve let my wife and kids down. Parenting kids with special needs is hard. Frequent periods of little sleep. Periods of insane high stress. Few peer relationships. Fewer deep connections with other dads.

It came to me the other day. I’m scared that someone will shake their head and say. “You know, it didn’t have to be that tough. Here is the one thing you failed to catch. Here is the single point of entry – that one phone call you NEED(ED) to make – that helps everything fall in line. For physicians that understand, planning the most effective education, locating and evaluating the most productive therapies (with easy evaluations regarding whether your kid needs 2 or 6 or 10 a week), planning their futures, etc., etc., etc.”

In the light of day, I know there isn’t “one thing.” Rationally, I know there is no easy way. Deep down, I believe we truly are good parents.I know we’ve done the best we can. So we keep charging ahead, evaluating the setbacks, celebrating the victories.

I love people who believe they have all the answers. I, however, am not one of them.