Many people with autism have limited recreational interests and Brian is no exception to this.. In his case, there are many reasons why this is so: Brian has significant motor planning challenges, along with focusing issues, and slower auditory processing. Not to mention his own unique personality that clearly communicates “no” to many things, especially if they are new and unfamiliar. It’s a delicate dance with my son in this regard and I have to pick my battles with him. His automatic default would be to sit on the couch all day (literally!) and scan “YouTube” videos or Little Einstein and Mickey Mouse episodes. I’m fascinated, by the way, how Brian is so proficient in maneuvering around these programs, despite his severe disabilities. I caught him recently doing the exact same thing on my iPhone while scrolling my Facebook newsfeed, lol! Perhaps Brian will also use FaceTime in the near future; I really wouldn’t put it past him! It proves once again just how much our kids know and what really motivates them. Secretly, I’m very pleased to see that awareness and engagement, but we all know that too much of a good thing is not necessarily a good thing at all, and that especially holds true for iPads and iPhones.

So, my “battle plan” with Brian is usually to encourage him to try a new activity, often to his great reluctance. He is the ultimate Creature of Habit and Repetition. He demonstrates his displeasure with something new most effectively in “The Freeze”, formally known as the “Stop, Drop, and Flop Move”. Many of you understand exactly what I’m referring to, it’s that “what is this, “I don’t recognize this”, “I don’t want to do this”, and the infamous, ” you can’t make me”. This has been Brian’s national anthem for years! It’s so predictable and sometimes simultaneously wearisome, depending upon the amount of sleep I had the night before. Years ago, this behavior would have required a team effort of tokens, edibles, and enough positive reinforcement for a lifetime for Brian to comply and try. Thankfully, he has moved on to the point of needing just a verbal command, then waiting him out for 20 seconds or so until HE decides it’s time to proceed-I can really set a timer to this one!

Brian’s Great Resistance is mostly to physical activity/movement and has always been. In part, I understand why, as he has low muscle tone overall and severely pronated ankles specifically, hence, the ankle/foot orthotics that he wears. Brian was a very late walker and struggles greatly with coordination. Sports are very difficult for him, although he has recently started to experience some success with both swimming and kickball. Brian is also starting to walk more, and as basic as this sounds, this is huge for him. I could really care less about Brian’s athletic abilities, but what I do deeply care about is his long term health. People with Down syndrome have the proclivity to become overweight as adults, resulting in potential long term health problems. It’s something we are trying to help Brian avoid by instilling good habits now. I also hear the voice of Brian’s orthopedist in my head, warning me not to let Brian become overweight, because too much weight on the feet would be detrimental to his already compromised ankles, requiring surgery and a lengthy recovery. No thanks, Doc! This is motivating enough for me to try my best in keeping Brian physically active, at least most of the time. Thankfully, both school and local recreational activities help us to help him achieve this goal. Brian is not quite as resistant to movement as he once was, so this is indeed a huge victory for him, achieved over a very long period of time.

Next is the Recreational Resistance to hobbies, such as arts and crafts or puzzles. Similar to physical movement, he resisted these things with all of his might to the point of sensory meltdown for a very long time. Only in recent years, will he even try these things very grudgingly, very briefly, BUT at least he will try them. I am very proud of Brian for at least trying and I do understand his reluctance; I too, dislike puzzles and can only draw stick people, lol. Brian is a music maniac and a water bug. These things feed his soul and create a joy in him that is palpable. A recent addition has joined the ranks of Brian’s Preferred Activities, and although it is not quite as beloved as music and swim, it’s pretty darn close and was quite a surprise to Jim and I: Brian has become obsessed with the written word, aka: books !📚 📚

Now this addition to Brian’s recreational repotoire is quite fascinating, as he does not read, however, he LOVES to be read to! Brian has a special affinity for preschool and primary board books, particularly the Eric Carle (Polar Bear, Brown Bear), as well as the James Dean, “Pete The Cat” series, and many other books now. Book reading was always part of the bedtime ritual since Brian was a baby, but he has taken it to a whole new level with requesting the reading of multiple books at a time each night on his Proloquo app on the iPad. We limit it to 4 books and the squeals of delight that come from this kid right before reading the first page of the first book, would make you think that he just won the lottery! I am so delighted that Brian is now interested in books. I loved them as a child too: there is nothing like the smell of a new book, the feel of a book in your hands, the way you can thumb through the pages of a book. Reading always fueled my imagination, increased my vocabulary, helped me to learn how to write, etc. Books are the great escape and how we learn so much about others and the world around us. Although Brian’s experiences will not necessarily parallel mine, what we do share in common is the joy of reading a good story and the feelings that books evoke. Our reading ritual at night is a fun, happy event for Brian; he revels both in the story and in the physical contact in sitting together. Brian has begun to examine the pictures on each page, pointing out “characters” when requested to do so. Brian does understand who the characters are in the books we have read repeatedly and anticipates favorite parts through his sheer glee. We have a ” new book of the month”, to introduce a new book, otherwise Brian would want to have the same few books read to him, lol. Slowly, but surely, he has built an interesting collection over time, with no end in sight!

My husband and I will continue to expose Brian to various recreational opportunities as they arise for both his physical, educational, and social development, while simultaneously respecting his limits when he makes them apparent to us. I sometimes still have to remind myself that it’s not about me, but rather it’s about what will make Brian ultimately happy. It’s an area of struggle, but like Brian, with repetition and time, I, too, am getting better. I am learning to detach from the notion of what I think Brian will like or won’t like to do. I am also learning to trust that Brian is quite capable in communicating in his own way and time what is best for him. It’s exactly what I would want if I were in Brian’s shoes, truth be told. In the meantime, Brian enjoys his music, swimming, and the nightly ritual of beautiful books, whose pages contain enough delight and wonder for his eyes and ears to behold. The characters are fun and the stories don’t disappoint. It’s the Grand Prize at the end of the day and the perfect elixir for bedtime.

“Polar Bear, Polar Bear, What Do You See?”

” I See A Young Man With A Book On His Knee, Looking At Pictures Engagingly” 😊👍🏻 – The End

Until next time, thanks for reading! 😊❤️