Wednesday, August 14, 2013

My "Perfect" Family

Recently, a good friend of mine told me that he has always thought of my family as one of those "perfect" ones, that he thought we had it all together. He admired our lovely home, was impressed with our decision to start our own non-profit and create programs for people with special needs, knew that Alan has been very successful in his career. What could possibly be wrong behind the gates of that gorgeous house, he thought? I laughed out loud at him.

Like every family, we have plenty of challenges, problems and dysfunctions. Like all families, we've had situations that have brought us to our knees. But there has been one challenge that we thought we might never overcome, one that has brought Alan and me to the brink of despair over and over for the past six years.
Austin, age 4
Our 21-year-old son, Austin, has struggled with drug addiction. I write this with Austin's permission, as he shares my hope our message might resonate with someone out there who has shared this struggle.

Austin tried marijuana for the first time in the eighth grade and I caught him almost immediately. We handled this the best way we knew how; he was grounded, we had many conversations about the dangers of drugs and alcohol, we screened who he spent time with and who he was allowed to invite into our home. At the end of his grounding period, we lifted our restrictions on him and what happened? Less than three months later, I found rolling papers in his pants pocket as I was doing laundry. This cycle was repeated over and over for the next six lather, rinse, repeat.

By the beginning of his junior year of high school, his GPA was so low we knew he didn't have a chance of being admitted to college, a huge blow, as we had always dreamed of sending both of our children to college. The second semester of that year, we allowed him to withdraw from public school and enroll in a private, alternative school. Almost all of the students in this school were there because they had been expelled from high school, primarily for problems with drugs and alcohol, and random drug screenings were a normal routine. Within a week of enrolling there, Austin failed a drug test, but this time he failed for more than just pot.

We immediately sent him to a wilderness therapy program, a 12-week ordeal where he slept in a tee-pee, did manual labor all day, continued with his online school work and ended the stay with a 14-mile hike on the Appalachian Trail. Everything about those 12-weeks was hell, for us and for Austin. He was deprived of contact with the outside world, was surrounded by kids who were referred by the juvenile justice system and felt completely betrayed by us for sending him there. We missed him terribly but at the same time felt guilty for the relief we felt at having him out of the house. And we did feel relief because at least we knew where he was, what he was doing and that he was safe.

He came home a bit humbled and we continued the therapy he had started there by working with a family therapist, but within three months we were back exactly where we started. The only good thing about that program was that he was forced to comply with academic requirements and had managed to re-take all of his junior year courses, bringing his GPA up to an acceptable level. We opted to have him remain enrolled in the alternative school to finish out his high school education. But being isolated from his peers, without the social stimulation that a normal high school gives, Austin was adrift and his drug use escalated. We knew he was experimenting with other things besides pot, but had no clue how deep and how bad the problem really was.

We managed to hang on to our marriage, but only by a thread, during this time. We were constantly at odds with each other over the proper way to respond to Austin's issues, with Alan tending to under-react and me overreacting. Austin was accepted to the University of Mississippi, and we let him go but with deep misgivings. I was certain he would fail and had a pessimistic outlook on what would happen; Alan was cautiously optimistic that college would somehow make Austin mature. Midway through his first semester at college, we realized we had a serious drug problem on our hands, withdrew him from college and forced him into drug rehab against his wishes. After participating in the rehab's family week program, we felt we had learned the tools we needed in order to hold our boundaries and get Austin's cooperation in getting his life back on track. Boy, were we wrong.

After his first stint in rehab, we agreed to let him return to Ole Miss and for the next year, he plummeted downhill rapidly. Finally, in April 2012, Austin admitted he needed help, agreed to go to rehab and then to a sober living community, where he finally embraced the 12-Steps of AA and NA and found his way to sobriety. Alan and I are trying to let ourselves believe that the nightmare might be over but are still worried about becoming too hopeful because of how many times and how deeply we've been disappointed in the past; disappointed in ourselves as parents, disappointed in Austin and disappointed that all of our well-intended efforts to help our son had failed over and over.

When my role at Merrimack Hall kicked into high gear, in the fall of 2007, Austin was a new 16-year-old, and his life was starting its downhill spiral. Alan and I had embarked on our mission at exactly the wrong time in our personal life. When I should have been attending to my son, I was busy with Merrimack Hall and when I should have been focusing on things at Merrimack, I was having to give all of my attention to Austin's problems. I felt torn in a million pieces, my heart breaking for my son, my confidence in myself as a mother and in Alan as a father destroyed. As I struggled to find my way in a demanding job outside the home for the first time in fifteen years, I also struggled with finding meaning in the work we set out for our organization. It wasn't until I started our first class for children with special needs that I began to find some solace, and some fulfillment in the volunteer work I do at Merrimack Hall.

And blame? Boy, did I ever. I blamed Alan and myself but I could not seem to assign any of the responsibility for his choices to Austin. I knew in my head that we were both good parents and good people, that we had both attempted to instill in our son the values we shared about working hard, giving back, respecting others and obeying the rules. But in my heart, I felt like a complete failure as a mother and was unfairly disappointed in Alan for not being able to make these problems disappear, as if he had the power to do that. Neither of us were able to accept that our son was spiraling into the dark life of an addict.

When we learned that there would be one boy in our first Dance Your Dreams! class back in 2008,  I told Austin he had to volunteer for the class so that the boy would have a male partner. Austin joined in willingly and became a valuable volunteer for the program as it grew. He has an easy manner with all of our students, an infinite amount of patience with the kids and has developed close relationships with many of them.

With my kids after our first recital
There were so many times during the past five years when I told myself, "Austin has to end up okay eventually, because the way he is with these children shows me that he has a big heart and compassion for others." I held onto that evidence of his true nature through many dark hours.

What a contrast I was faced with as JSAP grew and flourished; seeing parents who's children were afflicted with conditions that would limit their life experience in significant ways, trying to imagine what it must be like to know that your child's disabilities would prevent them from living out the dreams that we all have for our children, made me feel even worse for my son and my family. Austin was blessed with everything he needed to have a full and rewarding life but his choices were handicapping him every bit as much as if he had been born with a physical or developmental disability.
Austin with Elianna at Panoply '08

There are millions of families all over the world who struggle with the disease of addiction because it truly is a family disease - if you have an addict in your family, you know what I'm talking about. Addiction is insidious, affecting each person in the family in life-altering ways. I do not have words for the grief I feel when I imagine what it must be in my beautiful son that made him hate himself so much that he would resort to drug use, nor do I have words to express the guilt I feel for having two healthy children when I'm surrounded by families who's children live with disabilities through no fault of their own. I have learned, through counseling, reading and experience that addiction is a disease and that, as Al Anon teaches, I didn't cause it, I can't control it and I can't cure it. But as a mother, that does nothing to ease the grief, guilt and regret I feel, nor does it stop me from second-guessing every decision we ever made as parents or regretting almost every choice I ever made as Austin's mother. I am slowly coming to terms with the disease my son will deal with for the rest of his life. And the kids in JSAP are a big reason why I'm finally able to do this.

Abbey and Austin became especially close as he worked with her in her weekly class. Abbey knew about Austin's struggles and any time he's not in Huntsville, she asks frequently for updates on his progress. Last summer, Abbey shared with me a statement so profound I was rendered speechless.
These were her words: "I've decided that everyone has special needs. And that we all have two special needs in common. We all have a special need to be loved and we all have a special need to be accepted. Some people's special needs are on the outside, like mine. And some people's special needs are on the inside, like Austin's." What wisdom and comfort I found in those words, spoken by a 13-year old girl who will never be able to walk without difficulty, will never be able to tie her own shoes or button a button because of cerebral palsy.
Austin, Ashley and Abbey
Yes, we all have special needs, not just those of us who appear to be different.

A year ago, we were preparing to video tape a series of interviews with some of our students. The night before the scheduled video shoot, I was wondering to myself how the shoot would go and what sort of insightful or hilarious things the kids might say. I thought of Katie, our 18-year-old diva with Down syndrome who has quite a flare for fashion and frequently wears feather boas, hats and other accessories to personalize her look. As I was wondering what Katie would wear to the shoot, I thought about how cute she would look and suddenly, a revelation occurred to me. I know that people with Down syndrome have certain physical traits in common - almond shaped eyes, small stature, a slightly flattened nose. I can, like most of you can, see with one glance if someone has Down syndrome. But I realized in that moment that Katie no longer looks like she has Down syndrome to me - she looks like her mother. And then I realized that Anna C. looks just like her mom, Anna G. looks just like her dad, Darby looks like her grandmother and so on.

The video shoot was scheduled for the first day of Project UP's summer intensive and I briefly met a new boy who was joining us, a tow headed teenager named Zach. On a break from the video shoot, I went into the lobby and noticed a man I didn't know standing with several other people. He could have been, like the other people around him, a ticket buyer waiting for help from our box office staff; or he could have been someone coming for a meeting with a staff member. But I knew immediately that he was Zach's father because, even though Zach has those physical traits that tell us he has Down syndrome, he is the spitting image of his father.
Austin with Anna G and Peyton at Gala
I introduced myself to his dad, welcoming him to Project UP. His dad looked puzzled and asked how I knew who he was and when I answered, "I knew because Zach looks exactly like you" I saw in his eyes gratitude and relief. I believe that Zach's dad knew from my comment that his son would be safe and happy with us, that we would see Zach for who he is and not for what he has. I shared this story with our Project UP parents during a meeting we had with them and one of the parents said, "Congratulations. You are one of us now." All the parents gave me a standing ovation as their way of welcoming me into their ranks.

I have a son with special needs. I have special needs, and so do Alan and Emma, just like Abbey said. And so do you. My special needs are not manifested in an obvious way when you first meet me, but get to know me and you'll see that I have character flaws, personality quirks, behavioral issues that interfere with my ability to be my best, accomplish all that I can, function in the world without conflict. We will all spend our lifetimes struggling to overcome our special needs in one way or another. Maybe we won't be able to sustain a marriage or hold down a good job. Maybe we won't be able to work well with others, be an effective parent or be a good friend to others. There are a myriad of ways that we all struggle with whatever disability we have, but make no mistake - if you are human, you have disabilities.

Austin is doing exactly as he's supposed to right now, attending meetings and taking it one day at a time. He is fully committed to remaining clean and sober. His special need may present challenges for him throughout his life, but like the kids in JSAP, he is learning to accept himself for who he is, not what he has been diagnosed with. Just like my students, Austin will overcome his special needs by accepting that he's powerless to change them but instead must work to keep them from limiting his life experience. I have every reason to believe that my precious son is back and will move forward in his life in a positive way to achieve his dreams for himself. I can say that today Austin is happy...something I haven't been able to say about him for years.

It is my hope that by incorporating people with special needs into our society, offering them opportunities to engage in our communities more completely, we will all begin to realize that Abbey's theory is correct. I am grateful to Abbey for teaching me that having special needs is part of the human condition and, like Abbey, I will have to work for the rest of my life to overcome mine.
Austin and Anna G dancing at Dizzy Feet Foundation Gala


Joan May said...

Debra, Thank you for your beautifully written and insightful blog. I am sure it will be comforting to many people. Yes, we all have challenges and special needs and it was kind of you to share. Joan

Anonymous said...

Thank you so much Debra. You have given voice to much of my anguish.

Debra Jenkins said...

Anyone who watches someone they love battle addiction shares the same anguish. We are not alone in this battle...unfortunately, there are thousands of families who fight this war every day. You are not alone!

Johnny M said...

That was an amazing blog. I too have had my struggles with addiction. It's a daily struggle but with God and my program I'm 9 1/2 years clean today and loving life. I have a 16 year old daughter who wants to volunteer. Do you have anything there she can help with.

Debra Jenkins said...

We definitely need volunteers to work with our kids! We have 40 children ages 3-12 who come to one of 4 dance classes each week and 39 people ages 13 and up who come to one of 3 performance classes each week. We also have a visual art program that serves 20 people in 2 classes. All of our students are paired 1-1 with a volunteer who provides whatever level of assistance our kids require. For a complete class schedule and list of volunteer slots still open, contact Claire Lindsay at I know we need more people on Thursdays for sure and may need some other days as well. Thank you for reading and stay strong in your sobriety! And share the blog - I want to spread the message that we all have special needs...understanding this will open hearts and minds for people who are routinely marginalized. I always say I've learned more from people society tells us are "less than" than I've ever learned from anyone who's normal!

Ashley Dinges said...

Austin has grown so much in the four and a half years I have known him. And we've all grown more as humans thanks to being around kids like Abbey. She's far smarter and more intuitive than I'll ever be. I'm proud to call both of them, and you, my friends.

Cindy Alford said...

Abbey's mom is sitting on the sofa after reading this blog entry, with tears streaming down my face. This one touched me on so many levels. Debra, Thank you so much for sharing your heart and soul through your written words. You truly are "one of us" as another parent was quoted as saying. You have "special children" just like we do. We love you, Alan, Austin and Emma so much and are so grateful to have you in our lives. You have truly made a difference for us by consistently exemplifying the pure love of Christ in all of your comings and goings. Your family is not a "perfect" one but certainly a beautiful example of love and service at it's very best. We pray for you daily. I can not think of a better example for Abbey to chose as a mentor. We are truly blessed.

Sally Barton said...

Debra, Thank you for sharing your feelings and thoughts so elequently. For the first time in I'm not sure how many years, I woke up and read your blog and could actually understand exactly what you are going through. I don't feel alone. We too are struggling with an addict in our little family and there is not a day that goes by where I don't worry or spend all of my time thinking and praying for this nightmare to end. I need to schedule a lunch with you and furthermore some volunteer time with these special children and young adults. You nailed it when you said we all have special needs. My tears are overflowing and my prayers have now stretched into a direction I just never thought would ever happen to me. I long for and hope that when I share this blog with my son, he will feel the need to maybe come and be a part of this amazing foundation you have started. Thank you again for making me feel not alone. Sally