Fostering Independence in Your Child With JA

By Emily Delzell

Letting your child become more independent is hard for most parents. It’s even tougher when your child has a chronic illness like juvenile arthritis (JA), as missteps can have a serious impact on health. The natural tendency to handle everything for children — or to keep them “safe” by sidelining them from normal childhood activities — can make it harder for them to manage their care as adults and hinder their development in other ways. Luckily, there are things you can do to ease the transition to adult care for kids with JA. 

“Most parents aren’t control freaks, they’re scared; they want to make sure their child is not in pain and is doing well,” says pediatric rheumatologist Erica Lawson, MD, assistant professor of pediatrics at UCSF Benioff Children’s Hospital in San Francisco. She emphasizes to parents that, as a mom herself, she understands the impulse to maintain control.

 “The reality is kids mess up, they forget to take their medications, or just don’t want to take them,” she says, noting many kids have a rough time transitioning from pediatric to adult care, where they must actively manage their own care.

Pitfalls of Overprotectiveness  
When parents do all the talking at the doctor’s office or allow kids to skip chores or get away with things siblings would be punished for, children can absorb a damaging message, explains Caroline Hill, LCSW, a pediatric rheumatology social worker at UCSF Benioff Children’s Hospital.

 “Children learn what they’re taught. For example, children who have arthritis and their siblings notice when there is preferential treatment, which can inadvertently reinforce a child’s identity as ‘sick’ or ‘disabled,’” she says. “Children whose parents always speak for them may learn the message that they’re not capable of speaking for themselves.”

She and Lawson both emphasize the importance of treating children with a chronic illness as normally as possible. “This helps them to internalize that their diagnosis is just one part of their life, that it does not define who they are or what they are capable of,” Hill says.  

Holding kids back from sports or normal play is also a natural impulse, but generally isn’t the right call, says Lawson. “I tell parents that anything kids feel up to doing, they should be allowed to do,” she says. “The child should be the one who says when they’re hurting or need a break.” If you’re concerned about your child’s participation in a certain activity, check with your doctor about negotiating a way to join in that is safe. 
It’s important to treat children with a chronic illness as normally as possible. “This helps them to internalize that their diagnosis is just one part of their life, that it does not define who they are or what they are capable of,” Hill says.  
 
Preparing for a Successful Transition  
 First, support kids in learning and practicing the skills they’ll need in the future.
“The process should be gradual, giving the child independence in different forms at different ages — but the younger the better when it comes to allowing them opportunities to learn and practice being an active participant in their care,” says Kiana Johnson, PhD, MSEd, MPH, assistant professor of pediatrics at East Tennessee State University in Johnson City.

Try following these steps: 
1.  Let them answer. Johnson encourages parents to let children as young as age two or three try to answer some questions during medical appointments. “Encourage them to answer a provider’s question, and then, if they can’t, chime in. Children hear your response and learn how to start answering things on their own,” she says.
2.  Practice responsibility. As children get older, gradually allow them more responsibility, but be there to help if they have difficulty. One approach that can ease everyone into feeling more comfortable with autonomy is using a pillbox. You start by filling the pillbox at the beginning of the week and keep it in a place that everyone knows where it is. To avoid conflicts you can check to see if the pills have disappeared and then, if needed, remind the child. As children learn these skills and others, and show they can handle them, parents can increase responsibility, for example, by letting kids fill the pillbox on their own and call in refills.

Work up to handing over control. “In general, by age 12 a child should be able to tell you the name of their medical condition and how it affects them,” says Hill. “By age 15, we hope they know the names of their medications and are somewhat comfortable speaking to their doctor by themselves; by age 18, we are helping them to learn about insurance and how to access care.”

Hill emphasizes that every young person is different. “It’s more important that you’re helping your child learn the skills they will need for transition rather than to reach a specific goal by a certain age,” she says.

Letting Go
Talking to other parents whose children have made the transition to adult care can help ease fears. Try to find parents with children who are just a few years older than yours; their wisdom and experience can be invaluable.

Also, be compassionate with yourself.  “There’s a lot of anxiety that comes with being a parent, and even more when your child is living with a chronic illness,” she says. “Remind yourself you can’t always be there to protect your child, which is why it’s so important to start teaching them to manage their medical condition at an early age. There are many ways you can help set your child up to successfully manage his or her condition in the future. Whether you’re giving him opportunities to be a normal kid or helping him actively participate in his care from the beginning, it all works toward the day when he has confidence to manage arthritis on his own.