When I was a teenager, I wanted nothing to do with doctors, hospitals and physical therapists. I was done with blood tests, trying medications that weren't working and soaking my hands in paraffin wax until it accumulated and became a gross glutinous glove that made my skin smell disgusting.
Rheumatoid arthritis had been a part of my life for as long as I could remember and all I wanted was to be normal, to fit in, and do what everybody else my age was doing. My parents had the unenviable task of helping me have as normal an adolescence as possible and teaching me what I needed to know as an independent adult while making sure that my JRA (Juvenile Rheumatoid, or Idiopathic, Arthritis) - did not run amok and threaten my ability to be that independent adult.
JRA currently affects almost 300,000 children in the U.S.. This means there are 300,000 parents or sets of parents who have an extra task in raising their children as they become teenagers, a time that already comes with plenty of challenges. How do you help your child become independent when their chronic illness may prolong their dependence on you?
Empowering Your Teen to Make Medical Decisions
Until recently, you have been managing the medical side of things, speaking with doctors, making decisions regarding medications and surgery and balancing your child's physical difficulties with the normal parts of growing up, like chores and homework. As your child moves through adolescence, she'll have to learn how to run her life and responsibly manage her disease. The sooner you start involving your child in medical decisions, the better, so encourage him to participate in discussions with the rheumatologist, gradually taking a back seat as he becomes more confident in the situation (for tips on learning to be a good self-advocate, click here). Researching and discussing treatment options will teach your child to weigh the risks and benefits and this will help them in making informed decisions later in life. M.E.A. McNeil's The First Year with Rheumatoid Arthritis is a terrific resource when teaching your children how to manage their disease (for more about this book and an interview with the author, click here).
Is It Hormones or JRA?
Hormones have a way of wreaking havoc with teen's mood and dealing with teenagers can give you emotional whiplash -- they love you one moment, have no use for you the next and, at some point, there will be door slamming and Olympic-level sulking. With JRA, pain and fatigue can make your teen irritable, too. Give your teen space to have a wallow -- I spent much of my adolescence writing angst-filled poetry -- but keep the lines of communication open so she knows she can come to you with her problems. A good parent's guide to surviving your child's teenage years is Get Out Of My Life, but First Can You Drive Me and Cheryl to the Mall: a Parents Guide to the New Teenager by Anthony E. Wolf.
I have never met a teenager who didn't have a warped body image. When you add JRA and the possibility of deformities, you'll have your work cut out for you. I remember my parents being very body positive, being careful to not judge other people on physical looks, taking us to museums where paintings showed us how the idea of beauty changes with time and we had a lot of discussions about the messages of beauty and perfection sent by media and advertising. Unfortunately, no matter what you do, your child will struggle with body image. All you can do is be positive, giving them the kind of solid foundation that will help them see that beauty isn't just about perfect hair, weight or long and slender fingers.
Planning for a Bright Future
JRA and its physical impact can limit your teen's career options, but going to college can expand them. The more education you have, the more options you have for flexibility in the job market. Your state's Vocational Rehabilitation Services may offer financial assistance for people with disabilities to pursue higher education (for more information, click here). Working part-time during high school can provide valuable experience useful when applying to college, but your teen's energy levels may make that difficult. Check out volunteer opportunities that can also give experience without being as labor-intensive. If your family has been receiving Supplemental Security Income (SSI) benefits to assist with medical and equipment costs for your child, your teen may be able to transition onto SSI for themselves -- speak to your local SSI office for more details. Your child's rheumatologist may also help and if your teen's care is associated with a children's hospital, a social worker may give you more options and information about navigating the ins and outs of the system.
There's more to going to college than the finances and to help prepare your teen, the U.S.Department of Education has prepared a transition guide for students with disabilities and chronic illness. This guide includes information on accommodations that your teen can request (longer time for exams, part-time studies), as well as information on your teen's rights under the law.
Connecting to other parents who have been there can be an important part of surviving your child's adolescence with your sanity intact. A study done in the mid-90s showed that having a sort of mentoring relationship with parents of young adults with JRA decreases stress and the need for mental health support for parents. The American Juvenile Arthritis organization area of the Arthritis Foundation's website hosts forums for parents of kids with JRA, as well as a forum for young adults with RA where your teen can find other kids like themselves. As well, CafeMom has forums for parents of children with JRA. You and your team may also find the book Strong at the Broken Places by Richard Cohen helpful -- two of the five individuals interviewed for this book are young adults who grew up with chronic illness and disability and reading about their experience can be both comforting and empowering for you and your teen (we have a review of the book and an interview with the author).
Being a parent is a hard job and raising a child who has a chronic illness can be doubly hard. It's difficult to let go and let him fly on his own, but with the proper tools, anything is possible.
You can read more of Lene's writing on The Seated View.