As Andrew entered his pre-teen years, I started praying about how I could bring more male role models into his world. There are just some things that moms can’t teach. God answered my prayers this past summer, when Andrew made a friend at the local swimming pool. Andrew’s new friend was his exact age and mature enough to look past the differences. He was also a member of one of our local boy scout troops, which ironically, is the same troop where my eldest became an Eagle Scout.
A Scouting Opportunity
This young man’s scouting stories brought back a lot of good memories. I think that I never gave scouting a thought was because it teaches independence which can be a direct contradiction of Prader-Willi syndrome. Yet, God dropped this scouting opportunity right in front of me. I realized that this adventure could offer role models, friendships, and experiences. I was excited for Andrew! Yet, I had the fear of dread that only the mom of a special kid can feel, and I hadn’t even approached the scout masters or the boys!
Introduction and Inquiry
Parents of special kids don’t have the freedom to assume their child will be fine in any situation. There is more involved than just signing a permission form and sending them off to the unknown. I couldn’t just show up with Andrew and deposit him at a meeting. I needed to know if this idea was a possibility so I sent off my first email of introduction and inquiry.
My Email Answered
I received the following answer from the troop’s scoutmaster:
I’ll hit my 40 year service anniversary with the BSA well before I turn 50 so it’s safe to say I believe in the value of scouting all the way down to my core. Over the years I’ve worked with scouts with super-sensitive dietary needs like Celiac Disease as well as several scouts on the Autism spectrum. Prader-Willi is a different animal than any of these, but I’ve gotten comfortable working with scouts of all backgrounds, abilities and needs. I’m by no means an expert on anything in the special need’s realm but I’m always willing to learn and I believe every boy should have access to a scouting career filled with adventure, friendship, and personal development.
I was beyond impressed!
A Meeting with the Scoutmaster
Shortly after this encouraging email, I met with this same scoutmaster. I am certain that I overloaded him with a lot of ‘information’. He listened openly while I held nothing back. His words were as encouraging as his email. We both agreed that I would need to be present while everyone was learning the ropes. I agreed to speak to the troop and parents the following week. Scouting seemed like it might be a possibility.
I immediately started a list of what I felt was important for the troop to understand. I didn’t want to overwhelm anyone yet needed to get across the problems that Prader-Willi syndrome could present, as well as the dangers, and the importance of bear proofing campsites. Everyone in the troop needed to be on the same wave length for scouting to be a possibility.
Preparations to Meet the Troop
I went into Mom-of-special-kid-mode and started my “what do the boys need to know” list. (This is different than my “what the leaders need to know list”.) I attended the first meeting alone without Andrew’s knowledge. I was nervous, not about speaking, but rather how badly I wanted it to work out. For the entire week, I was certain that the feeling in the pit of my stomach was not butterflies, but instead, woodpeckers. I ‘needed’ the troop to understand Prader-Willi syndrome but more than that I ‘wanted’ the troop to accept Andrew, in lieu of what they were about to learn.
I have this fear of starting an adventure and then discovering that it can’t be completed. This has never happened but somewhere deep inside I afraid there will be a first. I would like there to be no future surprises yet ultimately, I know that no matter how much I train others, they will always have that one moment of deep understanding when Prader-Willi strikes. Only then, will they realize that the monster lurking in the shadows is real.
Meeting the Troop and Parents
Speaking to the troop was easy. In turn, I received questions of interest and curiosity, not just from boys, but from parents too. I have never felt so blessed, welcomed, and embraced all at once. I drove away from the trooping meeting in awe of the acceptance that I had just experienced.
Adventure Awaits
I feel blessed and scared and yet, I know that God is in control. I prayed; He provided a scouting opportunity. Read our continued story about Andrew’s scouting adventure: A Scouting Career Has Begun.
