Supporting Loved Ones Raising a Child with PsA

When my friends’ son was diagnosed with Juvenile Psoriatic Arthritis at the age of four and a half we were all struck pretty helpless. The first kid born in our circle of friends, he had been born to a crew of extra honorary aunts and uncles all anxious to spoil him, drive his actual parents crazy with the noisiest toys ever and to be the best possible bad influences on him we could. There may have also been some meddling out of love in there too. We were in our early to mid-twenties at the time of his diagnosis. I remember those days of me deciding which dress and heels to wear out on the town and how best to charm the bouncer to let me jump the line. Meanwhile, my best friends were not only learning the ropes of marriage, parenting and starting their careers, they were also slammed with this diagnosis.

Watching my friends raise their child with JPsA

At the time, none of us were aware of what this meant. There weren’t ads and PSAs on psoriatic diseases on the TV at the time, arthritis was something old people got in our minds and there were no resources such as this site to meet people in similar situations. I look back on those early years of my friends heading into all this uncharted territory and am still in awe of how they maneuvered it. How they raised an incredible son and how they didn’t disown us with all our bumbling through this process with them. They worked very hard to educate us as they learned the ropes themselves and never scolded us when we made mistakes in helping influence their son. 

Learning from my friends parenting style

As an aunt, uncle, grandparent you tend to love these kids as if they are your own. You want nothing but the world for them. That said, you also want to be the fun one the kids run to when the parents get to be too much. When the kid you love is impacted by health issues there’s an added level of support and caution you need to apply while still never losing that spirit. Learning to know and how to react to challenges and being able to translate what was happening as a result of the disease vs. the normal pitfalls of adolescence was a really hard thing to do for all of us. Knowing how to follow the parents’ lead, yet also being able to jump in when parents are being, well, parents to an extreme was a maze. 

What we learned, and what our friends taught us in no uncertainty was that us loving and playing a major role in their son’s life was the most important thing. We were gonna screw up, but guess what so were they. They made us feel comfortable, never kept their son from us and took us on the roller coaster ride with them. They never let this diagnosis prevent their son from experiencing everything he wanted to do. It was hard to learn the things we needed to be aware of, as you all know, there is no cut and dry solution. Plus, some things are really counterintuitive when it comes to this disease.

Experiencing the challenges of JPsA

I’ll never forget a day I got to spend with my little man at the Detroit Zoo. The two of us joined some other friends there and spent the day walking around. Even at the age of 5, he could regale us with every random fact of every species and he did so gladly. We were having such a blast it didn’t occur to me at some point his body was going to give out and it did, right after a mad quest to find his beloved Dippin’ Dots. I ended up carrying him the long walk back to the car but it didn’t even occur to me that holding him in one position for that long would actually make his joints freeze and hurt even worse. I was devastated and felt I had failed him. His parents didn’t scold or judge me, they just explained the best way to handle it in the future. 

I remember watching each stage of his development and the new hurdles that came along. The years of parents looking at my friends with consternation as they sent him off to play in the sun with little coverage and no sunblock while other kids were covered in ghostly thick white sunscreen and rash guards. I saw the way my friends would subtly educate those naysayers without ever being rude or throwing shade back. When the joys of the teenage years came on it was another learning curve to understand what were effects of medication/the disease vs. the age-old teenage schemes of getting out of something they don’t want to do. 

Understanding the daily impact of the disease

I’d remember situations I was in myself as a middle schooler where I’d pretend to be sick with the skills of Ferris Bueller to get out of a test. I’d try to see if he was pulling the same Oscar-worthy performance. Or was it that he truly couldn’t make it to school because of his excruciating pain. I watched his parents carefully and tried not to comment without the whole picture. I saw the way they inquired into what was going on and how they took the time to truly investigate, understand and honor his disease. I also saw how they worked tirelessly to never let it be a crutch or a reason not to at least try something. He has since grown up to an exceptionally thoughtful young man who sees the world from a lens others often don’t notice.

Being a supportive friend

As he’s looking to launch his own career he is drawn to pursuing something where he can give back and help improve the lives of others and that is something to truly be proud of. As I meet other loved ones and caregivers of kids with PsA, I always try to make clear that the most important thing you can do for them is love them, listen to them, learn all you can but don’t let too much research kill your spirit of just being the best grandparent, aunt, sibling, friend you can be. I’ve talked to people who are afraid to babysit because they are worried they’ll do something wrong. All I can say to that, is, of course, you must be comfortable, but don’t let fear prevent you from playing a key role in the development of a kid you love. Your perspective and influence is still an important component to forming their lives. Trust their parents to guide you and don’t be afraid. No kid comes with a rulebook, any one of us can screw any kid up at any time but, any one of us can also help be a key to their strength and character don’t let the kids you love miss out on that from you.