Back to School with Juvenile Arthritis: Some Patient Resources & Personal Thoughts – by Ashley Boynes-Shuck

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So, a new school year is beginning, and your child or teen has Juvenile Arthritis. How can you better prepare them for “back-to-school?”

Juvenile Arthritis in its various forms affects approximately 300,000 children, teens, and young adults in the United States and is a common – though under-diagnosed – childhood condition. While there are many types, Juvenile Arthritis, is an umbrella term used to describe the many autoimmune, rheumatic, and inflammatory conditions that can develop in kids ages 16 and younger.

Going back to school can be an exciting – and sometimes stressful – time for students and parents alike.

Here are some tips to make the transition an easy one, even if you or your child has JA.

The Arthritis Foundation says, “While you might be tempted to keep your child with arthritis at home under your watchful care, it’s important for him to attend school and other activities as consistently as possible. If your child experiences morning stiffness, work some extra time into his morning routine to loosen up for the day.

Make a point to meet all of your child’s teachers, school administrators and activity leaders because they can be your biggest allies in making sure his educational experience is beneficial. Educate your child’s teachers, the school nurse and the principal about arthritis and its effects. If your child agrees, offer to speak to his class or even to the parent/teacher association to  spread the word about juvenile arthritis.

It’s important to know your child has rights when it comes to obtaining an education. Several federal laws bar discrimination against children with disabilities in public schools and require  private schools to be accessible.

As a parent of a child with arthritis, you have two options to make special accommodations for your child: an Individualized Education Plan (IEP) and a 504 plan. An IEP is usually put in place when a child’s disability interferes with his ability to learn and requires specialized instruction. A 504 plan allows for physical accommodations such as obtaining an extra set of books to keep at home, grouping classes in the same location, receiving extra time to switch classes or allowing for absences and late arrivals. Your child’s school should have an IEP and 504 coordinator to guide you through the process. Be prepared to provide proper documentation of your child’s needs and disabilities. Your health care team  can help you  gather that information.” Image

Some other tips and ideas?

  • Have your doctor write a note so that your child can come in late or miss school if need be, due to their arthritis, making sure that their tardiness or absences are excused and will not affect their education.
  • Remember that the new school season involves a lot of planning, shopping, and anxiety — and for a child with a chronic disease, there could be a lot more anxiety than you would typically expect. Make sure to talk with your child or teen about their worries and fears — arthritis-related or not.
  • Consider having two sets of books – one for the classroom, and one at home — so that your child doesn’t have to lug around heavy books, potentially straining their shoulders or backs. Or, see if the book is offered in an e-version. Maybe a tablet or e-reader would be an easier choice for the student.
  • Choose an ergonomic, back-friendly backback or bookbag that isn’t putting too much strain on your child.
  • Tell the student to stretch between periods, walk around when able, and to rest during lunch and study halls.
  • Make sure that your child’s gym teacher is aware of any physical limitations, and see if there are some adaptations that can be made if the student is unable to participate in the regular gym classes. After all, physical activity is key in managing arthritis, but you do not want your kid to get hurt.
  • Make sure that your child is aware of their own physical limitations at times such as recess.
  • Talk to your child about bullying. Sadly, sometimes being different can make them a target for bullying, and you want to make sure that this issue is addressed if it is going on at your kid’s school.
  • Ask your child’s teachers to not grade them on handwriting, as sometimes writing can be hard if the student has arthritis in their hands. Also, see if they can do tests orally or on the computer if writing is a problem.
  • Suggest a “show-and-tell” day in your child’s class, where, if comfortable, your child can teach his or her fellow students about arthritis.
  • Organize an Arthritis Foundation fundraiser at the school to help spread awareness that “kids get arthritis, too!”
  • Look into purchasing special pen and pencil grips to make their writing utensils more comfortable and cushioned.
  • The Arthritis Foundation also suggests that you, “foster at least one good connection with school personnel. This person usually is the school nurse. She/he can serve as a liaison with the schoolteachers, family and rheumatology team. The liaison person also may be a teacher, guidance counselor or principal.”
  • Remember that a positive outlook can only help!

ImageWhile you do not want your child to feel singled out or ostracized, it is good to have a 504 plan and other accommodations in place in case he or she should need them. That being said, even if your child feels a little different from other students, they will thrive even under the circumstances of having arthritis or other conditions if they feel prepared, supported, and loved.

Below are some articles and resources to help you and your child head back to school with arthritis.

I myself was a child with Juvenile Arthritis.  (You can read my onset story and some of my experiences, here.) From a personal standpoint, I will tell you that there were some peers and school personnel who were very supportive — and there were others who did not take my condition very seriously. I expect that many of you will have this same situation. Your child may have to give up sports (for me, softball and cheerleading) and may face bullying (I did, to a degree.) Your kid’s friends may think they are faking or exaggerating, and teachers may “tsk, tsk” at them coming in late because mornings are so hard. Gym teachers may roll their eyes at the excuses. All of this happened to me, but  the reason I share this is because, overall, my elementary, middle, and high school careers were great. Even transitioning to college, I had an Occupational Vocational Rehabilitation counselor who made sure that I was getting any and all health-related accommodations that I’d needed. There are going to be people who don’t understand – kids and adults. But, that being said, there will be many more people, hopefully, who DO understand. A lot more is being learned about juvenile arthritis and there is much more exposure than back when I was diagnosed nearly 18 years ago. I thank the Arthritis Foundation and other organizations for helping to shed a light on this illness, and I thank them for making it easier for kids today to live with Juvenile Arthritis.

If you just do YOUR part and educate just one teacher, one school nurse, one principal, one classroom, then hopefully, awareness will spread. My husband is a teacher and I’ve let him know all about my school experience with chronic illness, and it warms my heart to know that, at the very least, HE will be on the students’ side should he encounter one with JA or another ailment.

So please, don’t be afraid to let your school know all about juvenile arthritis – and remember to support your child – sometimes, all they want is someone to hear them out and understand. A hug from mom or dad won’t hurt, either.

Happy back-to-schooling!

Stay Well,

Ashley Boynes-Shuck

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3 thoughts on “Back to School with Juvenile Arthritis: Some Patient Resources & Personal Thoughts – by Ashley Boynes-Shuck

  1. Something that I didn’t share in this article is that despite having to quit softball and cheerleading, I diverted my path from sports to writing. I ended up becoming Entertainment Editor of the school newspaper, Editor-in-Chief of the high school yearbook, got an apprenticeship during high school in Journalistic Layout & Design, and went on to sit on the editorial board of my college newspaper. I’m now a writer for a living, soon to be published. So, I didn’t end up becoming a college softball player as I’d dreamed, but, my life’s path has led me to be able to write and help others which is JUST as — if not more — rewarding. My school career was different than other kids, but different doesn’t mean bad. Every story can have a happy ending IF YOU WRITE IT! :) :) Good luck to all the others out there living with Juvenile Arthritis! And, please do check out my onset story (link is in the post above!)

  2. Pingback: Juvenile Rheumatoid Arthritis (JRA) | Anatomy and Physiology Blog -- Topics On Medical Issues, Diseases, Disorders, and Social Concerns

  3. If your child has juvenile rheumatoid arthritis, be consistent in pursuing physical therapy and exercise, as well as administering pain relief medications. It is very important that young people with rheumatoid arthritis remain active and keep flexible, while still being careful to protect the joints from further pain and damage.

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