Having arthritis will affect your entire family, but you can maintain a sense of calm and normalcy. Stick to as many of your child's daily routines and comforting habits as possible. Having arthritis should be part of your child’s life – not the central focus of his life.
Emotional Effects of Arthritis
Coping with a chronic illness diagnosis is difficult for anyone, but especially for children who are not emotionally or physically equipped to handle the situation. Expect and prepare for your child to some times feel sad or angry that he or she has arthritis. It’s important to address, rather than ignore these emotions. Help your child maintain the attitude that “arthritis is part of who I am, not the only thing I am.”
Talk to your child about how she feels about having arthritis. Be sure that you expect her to behave as well as other children and have the same responsibilities. Empower your child by educating her as much as possible about arthritis. Once she’s old enough, make her responsible for taking medications on time, reporting any medication side effects to you and following an exercise program. These responsibilities will help prepare her for the transition to adult health care. You can further prepare your child for adulthood by resisting the urge to shelter or overprotect her. Your goal should be to help your child become as healthy and independent as possible.
Arthritis is truly a family diagnosis. Parents experience many emotions – from sadness to guilt to anger that their child has arthritis. It’s tempting to keep a low profile and avoid participating in too many activities when your child is first diagnosed, but everyone will benefit by keeping relationships and schedules as consistent as possible. Parents should be sure to spend time with their other children and make time for one another – and themselves.
Siblings of children with arthritis will feel a full spectrum of emotion from guilt that they’re healthy, to resentment, anger, loneliness and a need for attention. One key to minimizing sibling tensions is to keep everyone equally involved in and informed about your child’s diagnosis and treatment. If your child who doesn’t have arthritis exhibits signs of clinginess, anxiety or dangerous behaviors, seek help from a counselor who can help ease this transition for your family.
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 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.
Transition of Care
The time will come when your child must assume responsibility for her own care. As your child enters her teens, begin discussing transition of care. Your child should learn all she can about her medications dosages and side effects, and document her symptoms, and feelings. As she matures, allow her alone time with her doctor and other care providers – knowing how to communicate effectively with her health care team will prove invaluable as she moves through life.
Your child’s rheumatologist should be a great resource in recommending adult care providers. Help your child become familiar with your insurance provider’s policies. The Patient Protection and Affordable Care Act, passed in 2010, now extends coverage for young people up to the age of 26, enabling them to stay on their parents’ insurance. While you might encounter resistance at first, your child will begin to feel empowered by managing her care and making important decisions for herself.