Just 2 years ago during graduation party time I needed an eagle eye on Wil. At one party he fled the party and would not leave the front porch. At another he ran to a side street and sat in the middle of it. Yesterday, at each grad party he hung with his buddies. And made new buddies. He played cornhole with known and new friends. He joined a basketball game with upper classmen from MSU. At each party, I only went to check on him here and there. A stark contrast from two short years ago.
He’ll be a senior next year, and then likely on to a young adult program. When he’s 20 he may have a whole new level of independence from what he has now. Time, opportunities, supports and his own will will tell.
Every individual is their own, no matter their disability. We cannot define nor predict their growth, but we can observe, we can open doors, and we can learn where to step in and offer supports, and as I’m currently learning, when to step back.
Wil has grown so much in his 10th grade year, and I can’t thank Kristi Campbell, Hope Schook and Heidi Drake enough for that! For this fact, it gives me space to snicker when I read about a day like this:
10:05 Refused to work 10:08 Turned it around 10:25 Refused to work 10:30 Turned it around 1:50 Refused to work 1:54 Turned it around
Just last week, I worked with a paraprofessional that subbed for Wil in 1st grade while his primary para was on maternity leave. We laughed that the main topic of daily conversation then was how to get Wil out from under the table most of the day. At the time, though, it was no laughing matter!
But with time, collaboration & communication with caring educators, we’ve come a long way, baby!
We are on to larger concerns, as Wil is an adventurous guy; without fear/recognition of danger which will likely be on our radar for years to come.
So seeing these little bursts of stubborness that he can resolve in minutes, is him showing his personality in full force and finding the self-desire within him to turn it around for a better day — while giving his teachers a run for their money! And we wouldn’t want him any other way!
Families and friends gathered for the annual Down Syndrome Support Team Buddy Walk the last Sunday of September. It is traditionally held on that date— though here and there over the years the Buddy Walk has jumped up or back a week. The Buddy Walk takes place on a one mile loop in Gallup Park, then walkers return for Pizza House pizza, music, a silent auction, raffles and games. Last year due to the pandemic we cancelled the walk. It felt good to be back, even with a few changes.
With the strain of the pandemic on businesses we chose not to solicit for the silent auction. However, many beautifully generous raffle baskets were donated and we held a 50/50 raffle. The popcorn machine was going and the band, Know Obstacles, was playing. Leonardo, the lead singer, always packs extra instruments for the kids to play and invites them to jump up on the stage. We chose not to have open pizza due to the pandemic (though we sure missed our Pizza House pizza!) and instead offered pre-packaged snacks that the kids loved.
The weather was an incredible blessing. The skies were a high, bright blue and the temperatures hovered in the low 70s. A light breeze offered just the right refreshment.
Wil’s first Buddy Walk was when he was 7 months old. At the time, the University of Michigan gymnastics team volunteered at the Buddy Walk. I have a photo of all the gymnasts gathered together holding baby Wil. It was 90 degrees that day.
The next year the Herron family joined us and have nearly every year since. Theresa Herron was Wil’s speech therapist at the time. I met her daughters, Ivy and Amelia, and they began to babysit Wil. Each year at the Buddy Walk, it became tradition for Wil to take turns getting piggy-back rides along the walk with Theresa, her husband Jordan, Ivy, Amelia and their brother Elijah.
Beckie Brewis, Wil’s Early On coordinator joined us each year, too, as did the Helquists, Desbroughs and Gregorys; friends we made through a program led by Beckie called First Steps. When Wil entered preschool then elementary school, he met Sarah Stommen, Ashley Bobo and Lila Harvey. Their families have joined us nearly each year since. As Wil grew, the love from our Manchester community grew too, and many more families have joined and supported the Buddy Walk. Manchester’s very own SteeleGrafix made the Buddy Walk t-shirts this year!
The Buddy Walk love has now extended to the friends I have made in my workplace, Orangetheory Fitness. It always awes me how love can spread.
This being our family’s 15th Buddy Walk (we had our own personal Buddy Walk with friends last year in Manchester), we have walked through rain, sunshine and unprecedented heat. We now walk through unprecedented changes in our lives. However, the spirit of the Buddy Walk remains constant – the love and support of individuals with Down syndrome.
“Look, Mom!” Wil widened his smile. A thick cord of wire ran through every braces bracket attached to the top row of Wil’s teeth. Then I noticed one of the brackets hung suspended over the jagged edges of an emerging adult tooth. Wil had just lost the baby tooth that previously held the bracket in place.
Wil reached down to the coffee table and carefully picked up a little white tooth. He cupped both hands and presented the tooth to me, as if in offering.
Though Wil is 14 years old, every missing tooth is as exciting as the first — and it has nothing to do with the Tooth Fairy. When Wil lost his first tooth, I showed him how to put it under his pillow. When he awoke he exclaimed, “Shiny coins!” Then, “Where’s my tooth?” My explanation that the Tooth Fairy took his tooth in exchange for the shiny coins was not a fair deal to Wil. He wanted his tooth back. Fortunately the Tooth Fairy was still orbiting the area and made a return visit.
Wil is entering high school this fall. I was recently asked by a mother whose daughter with Down syndrome is years younger than Wil: “How did you decide that Wil should receive a Certificate of Completion rather than a high school diploma? And when did you know?”
When Wil was a baby I would have answered emphatically, “Wil is getting a high school diploma! Wil will have full inclusion in school and take college courses.”
As Wil grew in age, I learned step-by-step with him. In his Kindergarten year alone, his teachers and I made multiple changes to his IEP (Individualized Education Plan) in determining the right balance for Wil between the general education classroom and the resource room. Wil excelled learning with his peers in the general education classroom in some subjects, but he also learned math best in the resource room. Though I had linear plans for Wil, they took many detours as I learned by experience what best fit his needs.
By Wil’s middle school years, I knew without a doubt that the Certificate of Completion was Wil’s best option. I was not saddened by this fact, as my earlier self might have been. Living experience-by-experience with Wil, the loss of earlier dreams also created openings for new growth. But I could not know or appreciate what that new emergence of growth looked like until I gained a widened perspective over time.
A friend, whose daughter with Down syndrome is the same age as Wil, recently shared colleges she investigated that have classes adapted for our kids. There are multiple life skills as entrance requirements. She has implemented those very skills into her daughter’s IEP which I think is brilliant. Because of this conversation, I’m going to look into the same options for Wil; I still hold college course plans for him. That said, my friend and I also have multiple alternate goals in mind understanding the flexibility required along this journey.
It’s vital to be educated, to have goals and plans. I value my bond with friends with whom I openly share experiences and learn from. Even so equipped, there will always be unexpected suspensions in time that appear devoid of answers. Linear plans change no matter how tightly bound. There are no fairies that place shiny solutions under my pillow, or that orbit back to deliver what I once believed lost. I have felt the depth of challenge in each of those spaces, but I now hold an underlying excitement with each one — from the first up to Wil’s entrance to high school and beyond. Not because I anticipate smooth transitions; rather I know, with each step forward I gain a widened perspective that reveals each jagged edge as an offering of new growth.
We all have experiences that “grow us.” We move along in life, doing what we do, thinking what we think, then, whoomp, there it is. The something that “grows us.”It’s impactful enough to rethink the way we think. To resee what we thought we saw. To listen again to what we thought we heard.
What “grows us” changes us, in both perceptible and imperceptable ways. Its a deeply interesting question to me in what “grows us.”
Was it uncomfortable and unwelcome? Was it deeply beautiful? What is something that began as unsettling that turned beautiful? Or the reverse? How did it uproot familiar ways to facilitate such a change?
What opens our eyes to what others are blind to? What drops us to our knees and causes us to look up in thanks, while others cry why me? What song brings a joy to our heart where others hear only noise? What “grows us” opens us to a different level of perception for its impact. What we believe we know for certain — there is always another level of perception to learn from.
Life is forever interesting in the way that it “grows us.”
'WIL'ingness = Willing to Embrace Extra in Life 