My son is awesome! This is why it makes the thought of him growing older without friends or a social life difficult to accept.
One of the hardest things about raising an adult with special needs is the heartbreakingly lonely life they may live. I love my son and he loves me, but we’re together a lot, and sometimes we need a break from each other. This is true for most parent/child relationships.
I’ve tried to find programs for Matt that provide a social outlet and allow him to make friends. As with everything else in his life, I’m persistent and luckily have found some great places for him to get his social needs met.
After the pandemic, I was desperate. One site I ran across was the Best Buddies program. This is an “organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment, leadership development, and inclusive living for people with intellectual and developmental disabilities (IDD)” (taken from www.bestbuddies.org)
After having a phone conversation with them, I felt this could be a good fit for Matt. I loved the idea of him having a fun, responsible friend he could go hang out with. It didn’t take long before Matt was paired up with an amazing “best buddie.” Initially, I had requested a male friend. My thoughts were that it would be good for Matt to get in some guy time. He was paired up with a nice young man and they had some good times together. They even won Champion of the Year in 2022 and were honored at a formal banquet in Denver that year. (More on that story in Champions Invade the Ritz). Sadly, other responsibilities became the priority and these two friends parted ways, but not without taking some great memories with us.
I worked with the program to get Matt a new buddie, and this time we were told there was a young lady who was interested in hanging out with Matt. Admittedly, I had hoped for another guy. Not that I didn’t think my son could have fun with a girl, but I had an image of him hanging out doing guy stuff like shooting some hoops or playing video games. I hesitated at first but agreed to give her a try. Boy was I wrong. Annie Kate is a freaking rock star and so far, it’s been fantastic! She is creative with her ideas on how they spend their time together. They paint and do crafts or hang out at the mall. She’s athletic so she’ll take Matt to the park or go for a bike ride. Sometimes they do something as simple as going to get a soda and listening to Taylor Swift blaring as they sing along in the car. Yesterday this fun duo went bowling. For their next get-together, she has a day at the gym planned for them. If anyone is going to get Matt to a gym, it’s Annie Kate.
AK has been keeping Matt up to date with the latest lingo. On one of their last outings, he came home saying “Slay” which apparently means “you killed it” as in “great job.” Matt uses the term all the time now and has even implemented hand gestures to go with it. Do you know what that means? This ole gal may be old, but I’m slaying.
We thought it would be fun to make matching shirts that said Slay on them. When they met up to go bowling, Matt had his on and surprised AK with hers. I’m not 100% positive, but I think I may have seen her tonsils when she opened her gift. She was so excited and couldn’t stop smiling. She immediately excused herself to go to the restroom and put it on.
When these two aren’t together hanging out, they stay in touch by texting each other. It really is a genuine friendship!
This program has been good for Matt from the minute we got involved. In addition to hanging out with AK, online game nights are provided where they meet up on Zoom with others across the US. We’ve had the opportunity to attend movie premiers and they even hosted a prom this past winter.
Imagine my surprise when I learned our state has low participation in this program, especially for those who age out of the school system. This is surprising to me because we are a family-oriented state and have so many kids here…kids who could benefit greatly from having buddies like Matt’s. We need to get the word out and grow this group.
I am so grateful to AK and Best Buddies. Here’s where I’m going to do a plug for the program (I was not asked to do this). We need more volunteers. These awesome, super cool individuals who have aged out of school, may be lonely and looking for things to do and they need your friendship. Based on Annie Kate’s comments, she has benefitted from it as well.
Lesson Learned (if you’ve read my book you know)
Did you know that 40-80% of people with Down syndrome are frequently diagnosed with Alzheimer's and Dementia by the fifth or sixth decade of their life, and even younger? I learned recently this is because one of the proteins that causes this disease is found in the 21st set of chromosomes, which is where a person with Ds has that one extra. This third chromosome means the likelihood of my son and others like him getting Alzheimer’s is higher than those of us who don’t have an extra chromosome.
This terrifies me!
One way to fend off this nasty disease is to stay active and to be social. But how does one with special needs do this? There are programs available, however, opportunities may be slim. As I toured and researched different places for my son to go, I found they either have a waiting list, are too costly (some as high as $75+ a day, which is unfortunate when you have to self-pay) or are not the right fit for them.
It took research for me to find programs that were best suited for Matt. He attends an adult day program twice a week, is on an alumni bowling league, and takes advantage of the Best Buddies program. I have peace of mind at the moment because my son has friends he enjoys socializing with. Heck, he may even have more than me now.
And on that note, I’ll plant the fun tune from Toy Story in your head, “You’ve Got a Friend in Me...”
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