Posted tagged ‘Aspergers Syndrome’

Our Twelve Days of Christmas

December 20, 2011

Growing up, I always wondered about “The Twelve Days of Christmas.” Other than a raucous carol to be sung enthusiastically along with Mitch Miller, the point was lost on me. When I was young, our family routine was for me to wake up at 5am, bolt (very, very quietly) to the living room, scope the mass of boxes wrapped around the tree, sneak back to bed, twitch for 5 minutes, then go wake up my sister and parents to start the mayhem. By 9am, all the packages were opened, partially played with, and the round of phone calls to distant relatives begun. By 7pm, dinner and dishes were done, the house cleaned and we were exhausted. And that was the end of Christmas. On to the next. That is not an indictment of my parents, it is what we did. All of us in my neighborhood, all my friends and their families.

This routine (without the trip into my parents’ room) continued through my early adulthood, and I carried it with me into married life. My wife and I actually slowed it down a bit, as we were always geographically separated from family, so we would start later, but inevitably, by 7 or 8pm, we were finished.

Then we had children. I was anticipating going back to the old routine. Relishing it, in fact. It didn’t quite work that way.

As they both became mobile in the toddler years, things were different.

Our son, who has Down syndrome, does NOT like change. So much so, in fact, that he refused to go into the living room because we had placed a TREE in it! Over the years, he has worked his way up to accepting the decor. I wouldn’t say embracing it, but accepting it. Also, he has never, to this day, been a big fan of wrapped presents. Developmentally, it just isn’t a big deal. It is a colored box. Big deal. And usually, there is one gift that he loves most. And he is content to play with it for several minutes, then retire to a quiet place and chill out. There is no reason to mess with any other colored boxes. So there has never been a high level of Christmas excitement for him.

Our daughter was the polar opposite. She would be up at the crack of dawn (her usual rising time), and tear down to the tree. She would unwrap as much as we would allow, as fast as she could, and about half way through, would completely melt down. We’d take a break of a few hours, and resume. As she got older, the break needed to last longer. At first, we struggled to understand what was happening. We knew some of it was wrapped up in sensory processing disorder, and eventually would embrace it through a diagnosis of Autism (Aspergers syndrome) and several accompanying diagnoses.

Around the time the kids were 6 and 5, respectively, it dawned on us. There was no set rule that said everything needed to be done by a certain time, or even a certain date, for that matter. We had always taught the importance of Advent, and we built on that. And we also came to grips with our own version of The Twelve Days of Christmas. Our kids would open a couple of items whenever we were all gathered in the living room, then save the rest for later. The days stretched, and so did our celebration of the season. It took the pressure off the kids, and allowed us to help them fully enjoy the season.

It did make for some awkward phone calls in the early years from relatives wanting to know the kids’ reactions to their cool gifts. But after explaining what we were doing, most understood, and waited for the day theirs was opened. And the puzzled look on my daughter’s friends’ faces is priceless when they see wrapped presents still under the tree several days after Christmas.

Recently, I felt validated when a theological scholar (and amazing songwriter), Glenn Packiam, wrote that, “Part of reclaiming a calendar centered on Christ means learning to let Advent be Advent – to prayerfully long for Christ’s coming and be attentive to the ways He is coming to us even now by the Spirit…and then let Christmas be Christmas – a burst of joyful celebration that goes on for 12 days!”

I’m not sure we’ve pulled off the entire 12 days, but we’ve pushed it through the beginning of the new year. And it’s a great reminder for us to start the year with a spirit of joy and gratitude. As I’ve told friends over the years, our Christmas celebrations look nothing like a Norman Rockwell painting. Some days it more resembles a Picasso, and others, a Monet. But they are beautiful, they are unique, and they are treasured. Just like my family.

Merry Christmas!

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.