In Full Swing

I’ve long loved the Swing.  Growing up, I could swing for hours in the backyard.  Higher and higher, wind blowing through my hair, legs pumping stronger and faster. Strength in motion. It felt like swinging could transport me to a different world. Immersed in a world where I was the center and everything around me stopped.  There was no worry, no time, no pressure.  Just solace in the back and forth. The passage of time was halted when I decided it was time to catapult out of the seat and onto the grass.  Exhilaration in my 9.5 performance and the crowd cheered!  What I didn’t know then is that the rocking motion of swinging and similar activities have therapeutic benefits to all, but most especially persons who need a lot more motion to wake up their sensory and vestibular systems.  People like Preston.  

Preston will do just about anything for Ms. Nancy at the BLOOM Center.  Her 40+ years in the Speech-Language and Early Intervention world bring key insights into the arena of adults with disabilities. Nancy’s skills can take Preston from a Mr. Stubborn half-attention-to-the-task participant to independently potting soil in 50 pots! You might say he’s becoming quite the skilled gardener. One day, Nancy offered that Preston may benefit from deep sensory input.  She added a calming room at the center, she’d take him for rides on a transport cart to provide sensory input and regulation, and she suggested we seek out an OT evaluation.  Occupational Therapy - a world we knew quite well from his birth-three years and even early elementary school, but a world that went dormant after about the 3rd grade.  So, we found a gem of an OT and in the first hour, Kurt and I felt like a whole new world opened up for Preston!  

Shout Out to Sarah Hoffa, MOTR/L, CLT at Benchmark.  In the first hour, Sarah began to break down the complicated world of all-things-neuro-sensory-vestibular and opened up a fresh glimpse of the potential benefits of such training for Preston. When she showed him the circular swing, it was as if a magnet in his core pulled him toward the swing and his whole face shouted, “Finally!  Someone understands me!”  Kurt and I got a little teary-eyed. After 12 sessions, we learned simple methods to help Preston’s mind calm and his body ground so he could make a little more sense of the world around him.  Activities like deep pressure joint compressions, peanut ball rolling, sensory brushing and - of course - swinging.

We’ll Take A Swing At It.

In the process of searching for an OT we stumbled upon an alternate method of communication:  Spelling To Communicate or S2C. Housed in the world of augmentative and alternative communications (AAC), S2C addresses many areas, but Apraxia is a key one.  Apraxia is that disconnect between Preston’s brain telling him to speak, and his difficulty in processing the motor planning needed to get the message out.  As two-thirds of persons with Autism have Apraxia, S2C has primarily been used for persons with Autism and similar minimally-speaking audiences.  But here is the kicker:  about 95% of persons with Down syndrome have Apraxia, but S2C has not been as wholly embraced in the DS world.  Why?  Perhaps because one of the fundamental premises of S2C is that the practice assumes intelligence.  Assumes Intelligence.  

Like many parents, I am ashamed to admit that I have not commonly equated Intelligence with Preston~at least not cognitive intelligence.  I mean, he’s non or at best minimally-speaking, he still watches Barney and Sesame Street videos, he doesn’t wholly verbalize, he seems to have no awareness of safety, and he can’t be left alone and unsupervised.  Assume Intelligence?  As hard as it is for me to admit, I admit I don't assume intelligence.  But we decided to take a swing at it and the evidence is quite alarming.  There have been random sightings of increased verbalizations and impressive matching and reading skills. 

The Spelling to Communicate process takes the motor and visual skills needed to point to letters on a letter board as a means to address Apraxia's motor planning deficit.  Almost like his motor system is held in the support of a swing, with the S2C method being the skills needed to hold on. You and I don’t need the prompt to hold on to the ropes; Preston does. He listens to a passage, he’s asked questions from the passage, and then is directed to spell the answer. Preston has engaged in 20+ sessions covering various topics such as current, civic, and historical events and has successfully spelled over 250 words.  But more than the spelling, his ability to just get the answer correct is mind-blowing to me. I mean, look at these questions and answers that Preston nailed!

Swing Both Ways.  

With any new field comes doubt; even controversy.  S2C hasn’t been wholly welcomed in the Speech world. It is not considered speech therapy and is not yet endorsed by insurance carriers.  The S2C research is ongoing. I can see both sides.  Where will S2C take Preston?  At the very least, we feel moving forward with S2C equips Preston with more tools to help him break out of his minimally-speaking state. We’re not naive enough to think he will suddenly start writing reams of prose.  But maybe, just maybe, Preston can begin to unravel the awkward, uncomfortable, dark and lonely corners of silence.  Like the corner where he can tell us what hurts. Or the edge that discloses the reasons for his OCD behaviors.  Maybe it’ll begin to peel back the misunderstandings and reveal some clarity of thought.   Or maybe, just maybe he’ll divulge the corner that shines on his precious soul and unveils the mysteries of his faith.

To those who are quite literally trapped in their non or minimally-speaking bodies, silence doesn’t accurately capture their essence and is often misunderstood.  If you want to learn more about one girl’s remarkable journey to finding her voice buried in the silence, I encourage you to watch Makayla’s Voice on Netflix.  It’s a 24 minute short film which depicts one family's success with using Letterboards (part of the S2C technique.)

Swinging On A Star. 

Meanwhile, Preston continues to enjoy his growing array of social functions.  He really enjoys his peers at ACE and BLOOM - especially their monthly field trips and themed respite nights. He continues to roster in Challenger Sports with his favorite sport of basketball starting this month and looks forward to baseball in the spring. A new program - the League of Angels - teaches baseball skills and brings a whole new level of celebration to their bimonthly gatherings. We are grateful to the church communities such as Christ Covenant, Central Baptist Bearden, Cedar Springs Presbyterian and of the Koininia Foundation for providing monthly social meetings aimed for adults with disabilities.  These events allow Preston to gather with peers, try new things and build a strong community of friends; something everyone needs. 

All of these programs depend heavily on volunteers.  My guess is if you ask who gets more out of the programs, it may be a close tie between volunteers and participants.  One event we forced Preston to go to this year was the local Buddy Walk for Down syndrome.  We hadn’t been in years and even with one of his all-time-favorite Uncles by his side, Preston was clearly mad.  Once the walk started, and Preston saw lines of local high school cheerleaders cheering for him and all his fellow persons with Down syndrome, his whole countenance changed.  He went from Mad to Glad in Zero to 60!  It’s a great example of how a simple act of kindness such as volunteering at a local event can quickly turn Preston from a frustrated and stubborn “Why am I here? to a “Wow! I’m so glad I’m here! Look at all these people who think I’m awesome!”

Porch Swing

The big news in Nathan’s world lies 492 steps down the street.  Launching into the world of homeownership, we were delighted when he found a house a quarter of a mile away!  It’s been fun watching him put his designer-eye to work.  He’s so natural at pulling everything together with an instinctual flow.  I don’t know many people who can say they have fully moved in (meaning furniture, accessories, fixtures and all pictures hung) in a little over two weeks, but Nathan did.  He’s always been like that.  I think Uncle Mark said it best, “Nathan’s made the most use of every inch of this house.” And true to this year’s theme - he’s even got a swing on his porch.

We didn’t know how Preston would adjust to this big change.  But he’s adjusting. The floor plan is the same as ours, but flipped.  A creature of habit, the first time Preston went to brother’s house, he went straight upstairs and sat in what would be the equivalent to his room in our house! Thus, he’s claimed his spot at brothers. Still, we can tell that Preston misses Nathan.  Here’s a few examples:

• When we tell him that “brother is stopping by,” Preston goes to the window and peeks out to be sure what we said was true.  
• One night, Emily & Nathan were watching Preston while Kurt & I were out.  They were watching TV and Preston had already gone to bed.  [Sidenote: Preston NEVER joins Kurt & I when we watch TV.]  Preston came downstairs, peeked in the room, saw Emily & Nathan, grabbed a blanket, accompanied them on the couch, pulled the reclining lever and joined them to watch a little Psych.
• Kurt took Preston for a walk in the neighborhood.  They went down the street and Kurt turned right to proceed to the boulevard.  Preston tugged Kurt and started pulling him straight to brother’s house!

Nathan and Emily maintain their relationship status both as a couple and as MIP’s (Most Important People) in Preston's world. Preston would be lost without their ongoing support of family duties, caregiving, and audience participants at random social events.  They even sponsored a trunk at ACE’s Trunk or Treat this year exhibiting as a Hockey and a Puck.

Mood Swings

Kurt started 2024 strong with a new neck and a determination to not let anything slow him down.  After 40+ years of worsening neck pain, Kurt had surgery.  While most people have a 40% buffer of room around their neck, Kurt’s had dwindled to zero.The technical term is Anterior Cervical Discectomy Fusion or ACDF.  Surgeons removed the disc between C4C5 to take pressure off his spinal cord then fused C4C5. Sounds awful - both in hearing the surgeon’s explaination and in reading the consent form which stated that the procedure could result in death.  But thankfully, surgery went well and Kurt took to rehab like a soldier.  

With directions to walk everyday, not even Snowmageddon could prevent Kurt from walking a mile in the snow.  Probably the most difficult order was to refrain from cycling for four weeks and then he was  only released to the Peleton, not the road, until April.  Still, Kurt managed to log 3,921 miles of cycling in 2024!!!  When he’s not riding, he finds solace playing Handyman at Nathan’s house, catching up with friends and enjoying some adventures with his siblings.  Adventures like the Gates Family Reunion in July, cycling with brother Clint in Colorado and gaming with the Brickeys in rounds of Sounds Fishy, Salad Bowl, and Telestrations. The man doesn’t stop.  

As for me?  Well I have relapsed.  Hello.  My name is Beverly and I have Unretired two times.   I said Yes to a short stint in school counseling at West High in April and a full fall semester at Gibbs High school.  Some would call this behavior a relapse, but I claim it is me embracing the first line in my retirement mantra which is “I do what I want when I want.”  Clearly, I have the option to say No but in these two instances, I said Yes.  Each experience taught me something new, gave me a fresh perspective on different school and community cultures, allowed me to fund a scholarship, and I had the privilege of working alongside some strong and inspiring educators.   It also made me grateful that I could walk away at the end of the stint and return to my daily retirement routine.  A routine of no-alarm mornings, lingering coffee talks in porch swings, long walks at Lakeshore, and spur of the moment trips to family, friends and Dollywood.  That’s the beauty of retirement.  Truly, I can do what I want when I want.  I am blessed.

Wishing you Sweet, Swinging Solace in 2025!