Here we are, forty-three years into this Prader-Willi Syndrome (PWS) journey. I sometimes forget my daughter Jessica has it, until she gets ‘stuck’, which we recently experienced, and then it brings me back.
For those unfamiliar with PWS, the beginning of a child’s life who has this rare syndrome tends to be a real struggle. They often exhibit low muscle tone or floppiness, failure to thrive, and many other deficits. As they enter the toddler years, the failure to thrive or inability to suck/eat changes to insatiable hunger, where our kids would eat anything and everything if we let them. Due to their small stature and metabolism, most of them only need half the calories of the average person.
For any parent/caregiver on this journey with this rare syndrome – I see you!
In Jessica’s early years, we had to watch her like a hawk, especially when it came to food in every situation. Parties, Halloween gatherings, and other events were all a nightmare. Back when Jessica was diagnosed, she was one of 600 known cases, and people had no idea why we were so strict.
I applaud you parents for doing the hard work now, educating those around you and fighting for your child; it will pay off!
Along with food issues are other concerns, such as behavioral issues. I was recently reminded of Jessica’s kindergarten days, when she had great difficulty transitioning from one activity to the next if she hadn’t finished the first one. For example, if it was a puzzle, she had to finish it before moving on, or she would get stuck and tantrums or behavior issues would escalate.
Fast forward many years, and Jessica had come through many of those beginning challenges.
Through years of hard work and many times being the “mean” parent, Jess has learned the importance of self-regulation. There was a season of a show called “Biggest Loser” on TV that Jessica faithfully watched in her 20s and 30s and gleaned food tips from. She even taught me a few things through the years.
I would love to say we never went through the phase of locking the refrigerator or cabinets, but we did for a season. We even had to install a camera in the kitchen at one point, as Jess was gaining weight and we couldn’t figure out why. Come to find out, she was sleepwalking and raiding the cabinets at night.
Thankfully, we have been able to ease up on this habit, and it is no longer uncommon for us to have ice cream as a treat for Sunday supper, all these years later.
As for the “being stuck behavior”, that has recently crept up out of nowhere with a vengeance!
Through the years, we have had some behavioral issues with Jessica and found our way through them, but honestly, it had been quite some time. As I mentioned at the start, there are some days when I almost forget she has P.W.S. because she manages herself so well.
Jessica has worked at a fantastic company for the last ten years or so. It is the same place that our son Sam works, who has nonverbal autism. They are picked up by van in the morning, brought to the main company and then from there, they go to their respective groups: Sam goes to his day program with his 1-1 to explore work options and up until recently, Jessica would go with her small group to a business in another town, where she would do piecework and quite well, I might add.
At the beginning of the year, we had her yearly review meeting with her work and DDS. She was doing amazingly well, making top production on her team and setting an exemplary standard.
Fast forward several months, and many changes and things had spiraled beyond repair. Over the last couple of months, we have started receiving concerns from work. Following a team meeting, we learned that the company had undergone new management and was implementing changes.
The first thing we noticed was when she came home and told us she couldn’t wear the steel-toe coverings she had been wearing for the last five years. You see, when she started, they had given her steel-toe guards to put over the top of her shoes and toes. She hated them as they were a bulky yellow…not becoming to her tiny feet, lol. One thing to note about P.W.S. is that our kids tend to have small hands and feet. We searched high and low for a steel-toe shoe to fit her, but the smallest size they came in was a women’s size 5, and she wears like a children’s size 2 or 3. I finally found a rubber steel-toe guard that fits over the shoe or sneaker, much like galoshes people would wear years ago. All of a sudden, with this new management, that wasn’t good enough, the steel toe had to be in the shoe. I managed to find a size four steel-toe women’s sneaker to work, yay!
Then, other things changed simultaneously. She got a new job coach, as well as the new shop management, who wanted to change some of their procedures. Together, all these things just seemed to tip Jess over the edge. What was once an enjoyable job for her now became a daily stressor, causing daily tears and behaviors we had not seen in a long time.
Through much prayer on our end, and conversations on the work end, we realized that keeping her there wasn’t getting her “unstuck”. For the mental health of all involved, we recognized that it was time for a change. Although change is sometimes hard for her, this has been a good move so far.
There were many factors to consider in her move, as jobs for our adult special needs kids are hard to come by and the waiting list is long, but we can’t trust fear above faith.
The truth is, for those of us who love the Lord, He promises He will work all things for good to those who love Him, and I know Jess loves Him. God loves her even more than we do, and we trust His plans for her, even though it’s been rocky lately.
If you’re in a place in your life, or with your loved ones, and things are a little rocky, do all you know to do practically. Get extra help from someone you trust, be it a counselor, case manager, etc., if needed, to help you navigate through this season. There is wisdom in a multitude of counselors (Proverbs 11:14b). Most of all, don’t forget to trust the One who created you or your loved one to guide your steps as He promised (Proverbs 3:6).
You WILL come through! It might be a season, but you are not alone; others have gone before you, and you will make it! Shoot me a message, I’ll be praying for you! ❤
SHEILA BOUCHARD 