Today I am excited to feature a guest post from my dear friend Herchel, a fabulous blogger and fellow JA parent. Since I am a mom with teen juvenile arthritis patients, I thought she could provide great perspective regarding issues surrounding pain for the younger crowd, as “Pea,” her JA kiddo was diagnosed as a toddler, and is still in early elementary school!
The toddler/preschool years can be challenging for any parent. Toddlers are learning that they are independent people who can manipulate their parents with tears, laughter, kisses, and tantrums to get what they want.
Yet, they still don’t have the ability to control their emotions or completely express themselves.
Parents of JA kids have a whole other dimension to navigate through as I found out with my second child.
I am Herchel Scruggs, of Gym Craft Laundry, and I have a now 6 year old daughter with pauciarticular Juvenile Arthritis. Her arthritis, though horrible to us, is relatively mild—at least it has been milder this year.
Ages three and four were not fun!
The biggest challenge I faced was when Pea learned that she could manipulate me by using her pain.
Children instinctively know that crying can get them results he or she wants; a clean diaper, more milk, a cuddle.
It took me much longer than it took Pea to realize that I reacted predictably when she expressed pain.
During those years, I was working away from the home with a 45 minute commute between my job and daycare. My relationship with Pea’s daycare was a huge help. We communicated constantly and they knew when it was time to call me to come and get her.
Pea is an active, bouncy little girl when her knees aren’t bothering her.
One day, she began to ask her teachers to call me to come get her because her legs hurt. Then she would run and play with her friends on the playground. A few minutes later she would insist that her legs hurt and would cry for me. Inevitably, I would get a phone call to come pick her up. There were days that I would arrive at work and get a call to come get her fifteen minutes later.
Once home, she would run and play and it would be too late to bring her back to school and make a second forty-five minute commute back to work.
So I advised her teachers and the daycare director to watch her after she asked to go home. If she was playing and walking normally they would tell her “ok” when she complained, but would not call me. If she became withdrawn, limped, or refused to stand then they would call and I would leave work to bring her home. After a few weeks of complaining that she told her teacher her legs hurt and her teachers were forgetting to call me, I explained to her that she should not call me unless she was really in pain. I said that when she hurts, she isn’t able to run and play on the playground and that her teachers only called me when she couldn’t play.
A few days after that conversation, I received a call from the daycare that though Pea was smiling and chatting with her friends, she said her legs hurt and refused to walk. Because she was so upbeat, they waited an hour and a half to call and still she sat and said her legs hurt too much to walk. I left work and went to pick her up.
Once we got home, Pea ran to the television to turn it on. Ran. The barely four year old child that refused to walk for over two hours ran to the television because she wanted to watch a princess movie.
So I asked her why she could run when her legs were hurting her so much that she couldn’t walk at school.
She told me she knew I would be called if she didn’t walk. She wanted to come home to watch Ariel or Belle. Her little chest was puffed up in pride at her ability to manipulate everyone to get where she wanted. Toddlers and preschoolers have no shame!
So amidst the doctor appointments, true flares, rough nights, and the crankiness brought on by chronic pain I had to start deciphering between real expressions of pain and fake expressions of pain.
Explain what is expected.
I sat down and explained to her that she would be in pain for possibly the rest of her life. However, that doesn’t mean that she can sit and watch television all day, every day. She still was expected to learn and function like every other kid.
Reward positive behavior.
The day she pretended that she couldn’t walk, I did not allow her to watch her princess movie. Instead, we worked on kindergarten readiness. Negative behavior can’t be rewarded. Pain is a fact of life for JA kids but it cannot become a tool.
Trust your intuition.
Look beyond the child’s words and tears to determine if he or she is truly in as much pain as he is expressing.
My daughter was in pain. I never questioned whether or not her legs were bothering her. I questioned the severity of the pain and whether or not she could truly function through it. Sometimes, it is as easy as asking an unexpected question like, “would you like to go to the park and run around?” If the answer is an enthusiastic “yes” with a few jumps up in down in pure joy, I question whether the pain is really as bad as he or she is saying. I emphasize that we can go to the park after school or on the weekend only when she can move around easily.
Just like with everything else, eventually your child will learn the futility of misrepresenting their pain. That doesn’t mean that she won’t try it again. It just won’t be as often! Last week, I realized my girl played up her pain because she didn’t want to go PE and jump rope in front of her class. This week, on PE day she tried it again but I was onto her.
I do err on the side of caution with her. I kept her home even when a small part of me suspected she might be using her arthritis to skip doing something that made her uncomfortable. My decision was made based on physical evidence (swelling) and knowing that this time of year, she really is in more pain than normal.
This is another one of those slippery slopes that comes with having a child with juvenile arthritis. I do the best I can to make decisions that not only helps her deal with the pain but also teaches her to cope with it. Interpreting a young child’s pain can be hit or miss, but with some practice you can also develop tools and to recognize the signs that help you make the best decisions for your child, and to help them live a more normal life with JA.