From Our Family To Yours

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For Exceptional Parent magazine’s 2016 Family, Community and the Holidays issue, the Chambers family—Dr. Hank, Jill, sean and Dr. reid—share their experiences, views and words of wisdom with other families touched by special needs.

It is a privilege to be a part of this interview with the wonderful Chambers family for Exceptional Parent magazine’s latest Family & Community issue. I have known my friends, Hank Chambers, MD and Jill Chambers, for over 20 years and can say without hesitation that both fit the criteria for Exceptional Parents. Hank is an accomplished orthopedic surgeon at Rady Children’s Hospital in San Diego and is well-known in the disability community. I can tell you that no finer man exists on this planet than Dr. Hank Chambers, who has impacted so many lives in a positive way with his surgical talents, his caring and compassionate demeanor. In all the years I have been involved in the disability community, I’ve never heard anyone say one bad thing about Hank (other than his fanatical support of the USC Football Team.) Despite the demands placed on him as a physician and surgeon, he has also been a devoted father and husband. Hank is fiercely proud of his two grown sons, Sean (who has cerebral palsy) and Reid (who has followed in his professional footsteps.) Just take a look at the photos with both sons from Reid’s wedding to see the pride in Hank’s eyes.

As much as I am in awe of Hank’s professional accomplishments, I am in greater awe of the dedication and composure of his wife, Jill, a product of the University of Colorado. A good deal of the burdens of parenting fell on Jill’s shoulders because of the time demands placed on Hank as a physician. As any exceptional parent knows, the challenges of raising two children, especially when one has a severe disability, can be daunting. Jill’s incredible energy, passion, dedication and instincts as a mother and wife helped solidify a stable home environment that produced the kind of loving family the Chambers exemplify. And, as all of us know, at the end of the day, love is indestructible and therefore the most powerful human force. Just ask Hank and Jill!

– JOSEPH M. VALENZANO, JR.

Q: Can you share your early experiences in raising Sean and Reid, and how your family coped during those years?
A:When I look back over 30 years at our young family, I feel a welling up of pride and amazement that we made it through those earliest years as well as we did. After Sean was born in Colorado and I was pregnant with Reid, we moved to San Antonio, Texas, which meant that we were without the two so very important things focused on in this issue: family and community. We had no family within a three hour plane ride and were total strangers to our neighborhood. Hank was in his Orthopedic Surgery Residency program at Brooke Army Medical Center and literally worked 100 hour work weeks. This was before the internet and social media. I felt very isolated and had very limited access to support, information and resources about CP. My only contact with other families in our shoes was the other mothers I met coming and going from physical therapy sessions. It took quite some time before we got hooked up with any services to provide needed things like respite, so basically I just plowed through it all one day at a time, trying not to think too far into the future. Honestly, it alternated between feeling like a dance where we had a rhythm going, and then Sean would have emergency surgery and it was pretty much chaos, and I felt like I was just putting out fires.

My mother-in-law, Teresa, was the angel who would fly out to help keep us afloat. I’m fond of the saying “what doesn’t kill you makes you stronger.” While the demands on me as primary caregiver were unhealthy and not sustainable, they did help forge a strength and confidence that I don’t think was there before being a mother. The most important thing my husband and I did during those years, and really throughout our children’s lives, was try to keep things as “normal” as we could and make a home which was not overly focused in an unhealthy way on any one member. We were good at finding and creating short periods of time to be together in fun, interactive ways. We invented this game we called “hall-y ball” which we played our home in San Antonio using a couple of nerf balls, a parent at each end of the hall (one of us holding Sean in our lap) and Reid romping in between us. We made up the rules as we went, modifying them as needed to give everyone a chance to “score”and then we usually ended up in a pile on the floor, laughing, as our dog made off with the balls. It sort of represents our path. We didn’t have a lot of outside resources but we tried to stay flexible, be creative, see the humor and joy in spontaneity and the simple things, and not plan too far ahead. This sustained us as a family and gave us strength for the really hard stuff as it came. Eventually, our networks grew, and I was able to get the kind of parent-to-parent support which I think is absolutely critical for families with children (and adults!) with special needs. Today, I still have a circle of friends we call “the Mother’s group,” which continues to be very important support to us.

Q: What are the first things that parents of a child newly-diagnosed with special needs have to deal with? How did you go about tapping community and other resources?
A: I think there a few essential things parents of children newly-diagnosed need. First of all, we need information about our child’s diagnosis. The good news is that the internet makes that much easier to access than when I was a young mom. The bad news is that it’s hard to sort through it all and weed out the inaccurate or biased sources. There are a lot of good tools and resources which have been developed by parents as well as professionals, and both perspectives are valuable. But we need to acknowledge that we can only process so much at a time. It’s a process (lifelong!) and we need to allow ourselves time.

Secondly, we need connection. We can’t forget to always come back to what is in front of us, our child, who needs to be loved, adored and accepted. There will be a lot of demands on our time for crucial medical evaluation, care, therapy, treatment, etc. But creating strong bonds by making time to interact with our children in mutually satisfying, sustaining and nurturing ways—like holding, cuddling, singing, talking (emphasis here!), strolling— our lifeline. Your life as a family is going to be different than you anticipated. We need permission and space to grieve the loss of some of our expectations and hopes. This is an ongoing process. Seek out people you can connect with and talk honestly about your feelings. We need to be kind to ourselves. This is hard, but we are not alone. There is a whole community of us out there advocating for our kids and one another.

Thirdly, we need partnerships with the medical and educational professionals who will also be caring for our children. We need to have mutual respect for the expertise and knowledge we each possess working together to maximize the quality of care and life for our kids.

Q: Kids with special needs need all the friends they can get. But sometimes, other kids may not necessarily flock to a child with a disability at school. How did you help nurture Sean’s social life as he was growing up?
A: Having my two boys 13 months apart presented some pretty big challenges, but in retrospect, I think it was a blessing in disguise. With them so close in age, they became instant buddies. I spent a lot of time on the floor helping facilitate the play and interaction between them, but I was immediately aware of how much Sean benefited from being exposed to the natural play of Reid, as well as of his flock of friends. And, I really think Reid and all those kids who got to know Sean benefited from learning at a young age about being “differently abled.” I also recognized, especially as the boys grew up, that Reid needed time to play and participate in activities without his brother. That wasn’t always easy to manage or to explain to Sean. And there were plenty of times when Sean was excluded from things because people’s homes or certain activities weren’t wheelchair-accessible. The hardest part for me was when Sean was hospitalized from surgery or illness for extended periods, and I really couldn’t leave him alone. We would piece together child care for Reid, and I would make sure to spend some time with Reid each day, but often I was a frazzled mess quite aware that there were a lot of unmet needs.

Because Reid was an active, outgoing and typically developing child, there were inevitably lots of playmates handy. I have fond memories of spending hours in the evenings with some of the neighborhood kids who met in the  cul-de-sac near our house and made a train with Sean as the engine (power chairs are good for pulling-if you’re careful), and kids hooked up behind him riding their skate boards, Big Wheels, etc. Being in environments where there are lots of opportunities for natural interaction is key. That’s one of the reasons Sean enjoyed and benefited from being included in his local schools so much. He knew the kids there, was more approachable, and there were more opportunities for social interaction. Having said that, I honestly can’t say Sean had or has the quantity or depth of friendships of his brother or peers. Even today, starting and maintaining one-on-one friendships is a challenge for him for many reasons: his speech difficulty, his erratic moods, and other logistical factors (transportation, staffing, etc.)

One of the things I give myself credit for was being willing to work hard to maximize Sean’s opportunities to develop and succeed, but then being willing to recognize and accept when it was time to back off and just let Sean be a kid. It was intuitive and meant learning to listen to my own heart and inner voice and not let the voices of others not walking in my shoes overwhelm me. I remember a couple of times taking the difficult yet necessary and also  empowering stance to reduce the amount of therapy sessions and homework for Sean. I decided that on some days, therapy and learning was only going to happen if it occurred naturally in our backyard or sandbox. I know now how important it is to remember that this journey with our kids is a marathon, not a sprint. And what I want for my son (both of my sons) is to have a quality of life based on a healthy sense of integrity, self-worth, dignity, participation, and most importantly, on loving and being loved.

Q: How did you ensure that Sean experienced as much of the growing-up rituals that his brother, Reid, experienced?
A: High School had been a really great experience for Sean. He received good special education services and was primarily fully included in his classes and school community. He was pretty happy. But a few things began to develop in his Senior year for which we were totally unprepared and which changed his life dramatically. He started getting severe dystonia, a movement disorder that can be associated with CP that wasn’t fully understood or recognized until the last 20 years. He also began to have some more challenging emotional issues with depression, and then anger. There were a lot of threads to untangle because he was starting to more fully understand the implications of his disability. He wasn’t going to be able to drive a car. He wasn’t going to be able to go on to college or start a job, or establish his independence in traditional ways. He was hurting from the dystonia and hurting from the reality of how different his life was beginning to look from his brother’s and from their peers.

Of course he was depressed. And on top of that, after much heart-wrenching consideration, at the age of 21, we made the decision to have Sean move to a carefully selected group home. I could write a book about this process alone. How hard it was to admit that I was breaking down from the accumulation of stress, lack of sleep, and unrelenting responsibility of his growing and intensive needs. How trying to find in-home supports to address these issues felt like plugging the dam, one finger at a time, and I was drowning. How it seemed like a “natural” time to make a move—just like his brother was doing, going off to college, I justified, a natural part of the process of growing up and learning to be more independent. How I realized that if I was going to continue to be a fully functioning parent and advocate for him for the rest of his life, I was going to have to start taking care of myself and my needs so I could be there for him in the long run. How I thought that Sean had to learn to accept the fact that he would need other people to help with his care, where he learned how to direct that care, make choices and be a good self- advocate.

Hardest thing I’ve ever done in some ways. And so, naturally, this change was monumental for Sean, and he really wasn’t on board. His plan was to stay home. Period. And so, he was even more depressed, and then even angrier (of course he was!)

Q: You later found out that aside from CP, Sean also has bipolar disorder. What are the challenges of caring for a person with both a physical and mental disability?
A: There was something about the quality, severity, frequency, and fluctuation of Sean’s moods that began to be very alarming. So we consulted a psychiatrist, which is another story in itself because there are so few qualified (experienced) providers for young adults with a significant disability; and, of course, insurance rarely covers the costs involved. It didn’t take long for Sean’s doctor to diagnose him with bipolar disorder. You know that often quoted poem by Emily Kingsley called “Welcome to Holland” in which she describes her feelings that having a child with special needs is like preparing for a trip to Italy, but then finding yourself in Holland, totally unprepared? Well, this felt like “Welcome to Mars.” We went from having confidence that we had tools and resources to handle life here on Earth, but were suddenly transported onto another planet, pretty much lost and clueless to deal with the new conditions and their implications. And I’m guessing it felt pretty much the same for Sean. He would say things like “I can do my CP, but I can’t do this.” Trying to grope our way along the path of supporting our son with significant physical and mental health challenges in young adulthood, we realized we were once again in uncharted territory. It turns out that for many people, the age of onset of bipolar disorder is in their late teens and early twenties. And we were just beginning to understand that a large number of people with CP experience mental health issues like depression, anxiety, bipolar disorder and even schizophrenia. Our family has taken on these less-understood and less-documented lifespan issues like mental health and, in general, the need for better services and care for adults. Kids like ours with CP used to have much shorter lifespans. Now, with better care, they live longer lives, thankfully.

There are more adults with CP than children. We hope to continue to shine a light on the needs of this population so these individuals and their families like ours will be more aware of the changes that can occur in young adulthood and beyond. We continue to work closely with Sean’s psychiatrist, and Sean takes medication to help alleviate some of his symptoms. But it is a constant struggle for Sean, for us, and for his team of caregivers. We all just try to work together sharing ideas about what works and what doesn’t, and focus on education and training. Today Sean lives in a home near ours that he rents along with his roommate, Andy. They just celebrated their tenth anniversary of living together. It has been so incredible to watch them mature, form a solid friendship, and learn to be good self-advocates and make important choices in their lives. They each receive supported living services, which means that they have a team of caregivers that they help to choose and train, who assists them individually which is very different from a group home. This individualization of services has significantly enhanced the quality of Sean’s life.

With Reid following in his father’s footsteps, specializing in orthopedic surgery for children, and his wife Laura training as an OB/GYN, it feels like our family is coming full circle in a way. We will all continue to commit ourselves to advocating for families and individuals with special needs.

Q: Tell us about your experiences with transition and financial planning.
A: Transition planning, moving from the teenage years into young adulthood, is critical to anticipating and being ready to address the changing needs of your soon-to-be “adult child.” Special education programs in schools can be helpful in starting this conversation. And there are some pretty big gaps in services which families have to bridge as their child turns 21. Stay connected with other families who have experience with this. Ask lots of questions. Learn about conservatorship before your child turns 18 to determine if that is something you will need to obtain. Learn about special needs trusts and talk to an experienced attorney. We obtained a limited conservatorship for our son and set up a special needs trust. Every family’s needs will be different.

(Sean’s Answer) My family was always there for me. I am glad we went RV camping. We had so much fun and it helped me be happy in my life. Sometimes we took a friend or my aunt. My Mom helped me be in the same school with my brother and my friends. I got to help out on the basketball team. I am glad we had computers at home when I was a kid. My Dad and I worked together all the time on them. Now I have a job fixing donated computers and I really like the people I meet and work with. My family saved my life. I am happy because my brother married Laura and I was Best Man at the wedding and now I have a sister!•


ABOUT HENRY “HANK” CHAMBERS, MD
Dr. Henry Chambers directs the Southern California Cerebral Palsy Center at Rady Children’s Hospital-San Diego, co-directs the 360 Sports Medicine program, and is a clinical professor at UC San Diego School of Medicine.

After graduating summa cum laude from the University of Colorado, Dr. Chambers attended Tulane University School of Medicine. He completed his residency at Brooke Army Medical Center, where he was honored for outstanding research, followed by a Rady Children’s Hospital-San Diego/ UC San Diego fellowship in pediatric orthopedic surgery.

Dr. Chambers treats pediatric gait disorders, sports injuries and cerebral palsy. His research areas include cerebral palsy, motion analysis, and controlling spasticity with botulinum toxin. Among his professional affiliations, Dr. Chambers is a member and former president of the American Academy for Cerebral Palsy and Developmental Medicine, as well as a fellow of the American Academy of Orthopaedic Surgeons.

Dr. Chambers actively supports children and adults with disabilities and has been on United Cerebral Palsy San Diego’s board since 1992. When not practicing medicine, he enjoys travel and discovering new technologies. – Rady Children’s Hospital website

PHOTOS PROVIDED BY JILL CHAMBERS