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Thank you for this one. So true and so often overlooked in situations where well-meaning and big-hearted individuals are giving of their time and energy to help folks with disabilities experience some of the wonderful recreational activities that those of us who have been blessed with “able” bodies can take part in. We’ve experienced some of what you write about with our own child. We’ve even found ourselves guilty of doing things with him that end up frightening him away from certain activities just simply because of the way we presented it to him and allowed him to experience it the first time out. I will never forgive myself for taking a sister’s advice on how I could clear my driveway of snow with the blower while caring for my special needs infant at the same time. Sounded like a good idea, I’d never had to do that before and she already has a couple of kids so maybe it would work. NOT!! It was a scary experience for him that spoiled him for outdoor, snowy activities for quite awhile. I could still just kick myself for not listening to my own instincts as his mom. That was a huge lesson for me about listening to my own instincts and a hard lesson about how all the helpful advice others try to offer sometimes helps and sometimes is not good for my child. He has gotten over it and absolutely loves playing in the snow and riding snow machines and sledding and all that stuff now that he’s a teenager but it took a long time. We were absolutely blessed with adaptive ski instructors who really got it and started him off slowly, used the appropriate equipment, listened to us as his parents and allowed us to be side by side all the way with his skiing experiences. Yet,I can totally identify with the situation you’ve described where folks are really not trained in the “emotional handling” of assisting folks with experiencing certain activities. In fact, we had a horrible experience a few years ago with an adaptive recreation program when we let a volunteer take him out on a jet ski. We gave repeated, explicit instructions about his abilities, disabilities, seizure risk, balance issues, etc. and felt confident that the instructor/volunteer was fully prepared to take him on “just a short little ride right around the little cove we were standing in at a slow speed and come right back”. Well, this particular volunteer promptly “punched it” and headed out to the middle of the lake at break neck speed and threw us into a heart attack/anger frenzy and there we stood on the shoreline, helpless and furious. We luckily found someone with a radio and we got him back to shore pretty quickly and thank God, he loved it and had a great time but it could have been disastrous, given his disabilities. Enough can not be said about learning about the person you are responsible for and at the very least, listen to advice from parents, caregivers and those who know the individual. You should not be volunteering if you don’t get that part of it.

Another comment that came to my mind after the last posting was this…
I have to share that along with the huge responsibility (and honor) of being one of the two people in this world who make decisions for our son, I’ve also learned over eighteen plus years of caring for him that I do also need to listen to ideas that others have regarding his care and his life’s experience. I do know that I have to ALWAYS listen to my maternal instincts when making decisions but there are many, many times when others have given us ideas that we’ve not thought of or that maybe we have thought of but thought it wasn’t right for him. Then after reconsidering, careful thought and soul-searching have decided to maybe give it a chance and had amazing and wonderful outcomes. We believe that while we are ALWAYS the ones who make decisions for him and we always have the ultimate last-say, it truly does “take a village” and our child’s life has been enriched because we have learned that yes, sometimes there are some really great ideas out there regarding his life that weren’t our own. I hope all parents of special needs children can learn this because it is a very wonderful experience letting other loving people into your child’s life to make a positive difference. Sometimes we’re all just a little too protective and we do have that right, but it’s very good for them when we learn to let go a little (with great caution) when the time is right for our children and they deserve that. We owe them that. And for those of you who may have known him, Tom Beatty was one of the people that helped teach us that lesson. Thanks Tom!

Thanks for sharing your personal experience and insight, Christie. You make an excellent point about the conflict between trusting our maternal instincts and understanding the need to try things outside our comfort zone. You are doing an amazing job with your son and set an excellent example for all of us!

Thanks for the kudos. We just do what we need to do every day and it’s always nice to hear that others think we’re doing a good job. It’s a tough one as I know you are well aware. Thumbs up to you too!
I had a wonderful heart warming experience just a half hour ago that ties right in with these thoughts. I dropped my son and his beloved caregiver off at a therapy appointment. After the hellos, holiday greetings and chat about the day’s plan, I said good-bye to my son for an hour so I could get a few things done. He questioned where I was going and why, we talked about all that, then I said “see ya”. He settled back in his chair and smiled a heart melting smile and said “see ya mom”. I can’t express enough how, after 18 years of feeling like I’ve been attached at the hip to this special boy, what that feeling is like to have us both be so totally comfortable and even content and happy to say “see ya” for a short time. I hope all parents of special needs children can experience this. AND, I hope all special needs children can experience this as well. It is soooo good for them to learn that they can trust others and have some independent time away from mom and dad and life’s still GOOD!
HAPPY, HAPPY NEW YEAR to all!!