Not So “Typical” Teens

One of the first things I learned back in 2008 when I first became involved with people who have special needs was that we should refer to people with disabilities as people first – like people with special needs, not special needs people – and that those of us who don’t have disabilities should be referred to as “typical.” After spending seven  years working with our teenage volunteers, I can tell you that there’s nothing typical about any of them.

When I first got the idea to try teaching dance to kids with special needs, I knew that the normal teacher/pupil ratio wouldn’t work. I didn’t want to limit my program to one type of disability; I wanted any child who wanted to participate in the arts to join. But that meant being prepared for children with a wide variety of challenges – verbal, physical, social – and in the beginning, we only had two teachers…Hayley Henderson and me. Even though I limited class size to 10 students, I knew that with an age range of 3-12 and with disabilities like Down syndrome, autism spectrum disorders, cerebral palsy, mitochondrial disease, spina bifida and others, we were gonna need some help.

Hayley turned to the kids in the Huntsville High School Show Choir, led by her mother and Choral Department Director Sherry Smith, for help. She rounded up 9 kids – and I threw in Austin to get us up to an even 10 – and we had our first crop of typical students to serve as program volunteers. I had no idea back then that relationships between students, volunteers and the families of both would form outside the walls of Merrimack Hall. Once they’ve graduated, our volunteers return to visit us on school breaks, take their former students out for lunch and visit them each time they’re home from college. Our program is proof that both sides benefit when we are all integrated together.

I’m amazed…and grateful…when, year after year, teenagers come to us from all over North Alabama. These typical teens are already exceptional – all of them are high-achieving, budding philanthropists with too many talents to list – and the friendships they share with our students are, well, they’re pretty special.

We honored 9 seniors at our Spring Recital – 5 typical kids and 4 kids with special needs. In the first half of this short video, the volunteers say, in their own words, what our students have meant to them; the second half is me, talking about our students. For anyone who wonders how “typical” kids could benefit from having kids with special needs in their classrooms, and in their lives, this video says it all.

Luckily, we will still have our Project UP seniors with us next year but our volunteers will be off to college – every one of them having received prestigious scholarships. Halle Ragan, Emily Dean, Peyton Davis, John Chilton and Bailey Kinnard, we will miss you so much! These typical teens, and the 50 who have already graduated, took our first little dance class and have turned it into something I never could have imagined. Anytime I try to thank any of them for their service, they tell me that they’re the ones who should be thanking us…for lessons learned, for joy received and for the privilege of friendship with kids who have special needs.

 

 

 

In Sickness and In Health

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I usually write about the people with special needs who are part of my arts education program or I write about being the mother of an addict in recovery. Today, I’m writing about a totally different topic…my marriage. I’m close to being an “expert” on the topic of marriage, as I’ve been married for over 28 years to the same man, who was my sweetheart for five years before we said, “I do.”

What prompted me to think about marriage is that I went to a wedding last weekend. The groom has been one of my daughter’s closest friends since they were in diapers and he is the first one of her close friends to tie the knot. He and his bride looked like Barbie and Ken, so gorgeous and happy. When the minister said, “Who gives this woman to be married to this man?” I thought, “He’s not a man…he’s a little boy who’s diapers I changed; a boy who was convinced he was Captain Hook for about two years; a boy who loved to eat Reece’s Pieces…very deliberately, one at a time…for hours.”

As I teared up, Alan put his arm around me. Maybe he thought I was thinking of our wedding day, of how quickly the years have gone by, of how incredible it is to realize that we’ve been together more than half of our lives. I was thinking these things but I was also thinking that I’ve taken for granted that I will always have Alan by my side and that we’re too old to take anything for granted anymore.

Debra and Alan first date

When I was 25 and again when I was 40, I had intestinal resection surgery to deal with my diagnosis of Crohn’s disease, a chronic and progressive disease of the intestines. Alan’s had to face the possibility of my death and he’s had to nurse me through everything from C-sections to back surgery. The worst health issue that Alan’s ever had was a torn ACL. Because I live with a chronic illness, I’ve obviously thought about the possibility of my death and have sometimes agonized over the thought that I might not be around to watch my children reach adulthood or to be a grandmother.

I’ve worried about what my children would do without me but never about Alan. He’s a man, after all, tough and capable. I’ve always figured that I’d go first and that he’d get married again or would spend the rest of his life remembering me with affection but would move on without much fanfare, remaining strong for our kids. I’ve never doubted his love and devotion but I guess I’ve always thought we were two individuals who decided to spend our lives together and who would eventually be okay when one of us was gone and the other had to return to life before those “I dos.” I’ve been oblivious to how old we’ve gotten and told myself that one of us dying…well, that won’t happen for years. Only we’re not so young anymore and Alan wouldn’t have been okay if something had happened to me. I know this now because the tables have turned and for the first time in the 32 years that I’ve known him, Alan is facing a health crisis.

It’s nothing he won’t recover from but it is something that involves a serious major surgery, scheduled for two weeks from now. It will involve a week in the hospital, then a 6-week recovery and it will involve a lot of pain and some alterations to his lifestyle. I know he will be fine, I’m grateful that a routine procedure discovered something that isn’t critical now but would have been a death sentence a year from now and I have no doubt that he will recover completely. But imagining, even for a minute, that I might lose him is something I wasn’t prepared to think about. No, if something had happened to me, Alan wouldn’t have been able to just move on and if he goes before me neither will I.

Debra and Alan at Conner Wedding

As the bride and groom pledged to be there for each other through sickness and health, I thought about the power of those vows we take. Two young people choose each other and then they stand in front of God and everyone they love and promise to hang in there, even when it gets hard. Those words we say to each other, when we are too young to really understand what they mean, are what bind us together through the years and the ups and the downs, through the joy and the tears and the loss. When people take those vows, they cease to me “you” and “me” and they become “we.” Alan and I have been a “we” for so long that I can’t even contemplate what it would mean to be “me” again…and I never want to find out.

Being married isn’t easy. Marriage requires a selfless resolve to remember those vows every day and to work through those things that make it difficult to live with the same person day in and day out. Marriage means that sometimes you may not get what you want and sometimes, you might not even get what you need. But it also means that if you stick with it, your relationship with each other will evolve into an intricate tapestry with threads of tragedy, sadness and pain woven together with threads of joy and contentment. If you stay the course, your marriage will become a union of you and me that cannot be put asunder because it’s woven together so tightly that it’s bonds are stronger than you could imagine when you were young and so in love. And when you’ve been married long enough, you will know that you are a different person, a better person because of your spouse and because of all the things you’ve shared in your life as husband and wife.

Because of this current health crisis, I realize that I cannot take being married for granted any longer because it won’t last forever…one of us will leave our marriage someday. The other one won’t be ready when that happens and the other one will never be the same. But at least whichever one of us is left behind will have a beautiful tapestry to wrap around our shoulders.

Debra and Alan with kids from NoAla