Blazing Trails In Down Syndrome…With Help From My Friends

imageAs I sat in my car, lined up behind 3 yellow Ann Arbor Schools buses, waiting to get into Hudson Mills Metropark, I thought a better day could not have been hand-picked for the event of the day. The sun, this Friday morning, was a welcome burst of light and warmth to break up a chilly and cloudy week.

Those in the buses, myself, and most likely all the occupants in the cars that created the line into the park, had come to participate in Cooper’s Annual Fun Run/Walk.

The 5k event, on a wooded and winding path through Hudson Mills in Dexter, is for kids with special needs in Washtenaw County, with the intent to promote fitness. All participants receive a blue ribbon at the finish, and the middle schoolers or anyone who is zealous enough, can take a second run/walk around the loop to receive a trophy for their 10k accomplishment. Everyone celebrates afterwards, with sack lunches or grilled hotdogs, playing on the swing sets or with carried along games like hula hoops, kick balls, footballs, bubbles and pinwheels.

All students and educators received t-shirts for the event. The shirts shared the same logo, but varied in different colors for different groups. As I emerged from my car, and headed in the direction of the walk, it wasn’t hard to miss where I was supposed to go. The park was alight with neon pinks, greens, and blues.

Wil and his crew were already there when I arrived, the wooden picnic tables covered in brown paper lunch sacks, family-sized bags of potato chips, coolers full of water bottles, and gold star balloons sparkling under the sun, tied to a Manchester Schools sign next to the wooden tables, marking our spot.

Just before go-time, Goldfish crackers were passed around as pre-run fuel. Excitement was high. The bullhorn went off, and our kids with Down syndrome immediately clamped their hands over their ears, sensitive to sound, while other kids, spurred by the noise with a course of adrenaline, were off down the trail running.

There was a huge crowd, so we started off slow, Wil’s hands still over his ears. Once we made it a few feet, and Wil felt secure he was past any further noise, his paraprofessional, Kim, and I each held one of his hands. Our friend, Heather, who also is the much adored bus driver, walked alongside with us.

As the crowd began to spread out, and there was space in front of us, Wil would pull forward in excitement on both Kim and my hands, stretching our arms to full capacity. Then, a short time later, he would try to sit, saying he was tired, our fully stretched arms behind us, holding him from the ground. Heather, Kim or myself would remark during these tired moments about the flowers on the trees, the flowing river, or a wood carving along the path, to distract him and get him moving again.

There were kids of all ages on this walk, with varying needs. Some kids ran the entire 10k, while others were pushed in wheelchairs. Most of our kids were in the care of an educator, and I could not help but think of how very vulnerable our kids are during the day when we are not there. Every one of our kids, in the hands of someone who is not family that we must trust them fully to. Many of our kids are not able to communicate to us what has happened in their day. Are they being helped or held back? Are they being enabled or encouraged? I looked around at all of these kids as we walked, and I prayed for each and every one of their well-being. For each and every child to be in the best hands that they could be, for each of their individual needs.

I thought back on every teacher Wil has had since pre-school forward. We have been very fortunate with Wil, every single year. His educators have taken his own individual interests to heart. That doesn’t mean every year has been smooth-sailing, but that is really the point. It is when life isn’t smooth-sailing that the best care is most important. We have had multiple hiccups along the way mixed with many, many stubborn moments. Those places in time have not been swept under the rug, ignored, or even smoothed over for Wil by his educators. Enabling, doing things for Wil, is worse than ignoring his behaviors. We all need to decipher the most effective way to move forward, most importantly Wil needs to learn that for himself. Sometimes, though, we just don’t know how to do that, even with the best of intentions. We get just as stuck as Wil feels.

The night before the event at Hudson Mills, I received a desperate email from a friend whose IEP (Individualized Education Program, a goal setting meeting for kids with special needs) is coming up for her daughter with Down syndrome. She doesn’t know if her daughter is on track or what that track even is. Her daughter is the only child with Ds at her school, and she is afraid she is missing something. She asked what Wil’s goals were at her daughter’s age; what he was working on, what he was struggling with.  She needed something tangible to hold on to. She has the best intentions, but no idea where to go with them.

As you can imagine, IEPs evoke much stress and worry from parents. How are our kids doing on the track they are on? If they are struggling, do we need to change tactics or keep moving forward with some tweaks? If we do need to change tracks, which one is best or is there one out there that we have not even explored, much less even thought of? There are so many questions, and so many we are not even aware of to ask. We so desperately want to be proactive, but sometimes, we don’t even know what that looks like. That is where our friends come in.

At the event on Friday, I was having a casual conversation with a friend who was once Wil’s paraprofessional and also has a child with special needs. Her son is older than Wil, so she has traversed the road ahead of me and has even blazed trails of her own. She is someone whose advice I do not take lightly. In our conversation she shared some new ideas they are trying with her son’s IEP. Wonderfully proactive ideas. A route I had not even thought to take, and questions I had never thought to ask. Her ideas opened my mind for Wil and his future IEP goals.

Friends and conversations like this are priceless beyond measure. There is no need for additional explanation, there is an innate understanding. They provide both a feeling of deep support as well as welcome guidance.

Walking alongside educators, kids and their families on Friday, I soaked in all the stimulus around us; sunshine, laughter, calls out out to friends, music on iphones, coaxing to go one more step, the finish is just ahead! Every single individual with specific needs and someone right at their side to encourage their accomplishment. A place I could not be more thankful to be. A place I never, 10 years before, would have guessed I would have been.

Our kids, and we as parents are so very capable of so very much. There is a lot of frustration involved, and tears, so many tears. But, let me assure you, it is not because we are feeling sorry for ourselves. Sometimes, we simply don’t know which direction to go. We have hit a “stop” sign, and we have no idea which path to take. It may not have even been blazed before, or somewhere we even thought to look.

The walk on Friday was a refreshingly well blazed trail. One we could all walk together, as varying as all of our kid’s needs were. A walk where there was only encouragement along the way, and the finish line was a sure thing. Even when our kids got tired, and didn’t want to take one more step, we still had the comfort of knowing exactly where the finish line was and how we would get there, no matter how long it took. And, at the finish, our kids would know that accomplishment, and hold their blue ribbon proudly in their well-earned hands. Or even take it to the next level for a second trek around to proudly hold the weight of a shiny trophy.

I walk forward every day, taking it day by day. I don’t know what next year will bring. Wil, he is so vulnerable in many ways. He cannot fully verbalize to me all that happens in his day. I am thankful to know the trust I do in the hands he is in during the day. I am very confident that his educators are helping him, not enabling him. They are always working to understand him, not to force a square peg in a round hole.

Even with that, as we move forward, with the desire to be proactive, I don’t know what I don’t know. That is exactly where these conversations with one another are so key for Wil’s success in life. This walk together is not to be underestimated. The walk, our friends, our educators, all together, is not just to promote fitness for our kids. I see it as a way to promote community amongst one another. We are not alone, we are never alone. It’s in the sharing with one another, where information is pointedly sought, or when it simply rolls out in the course of conversation, that new paths are blazed, or tried ones are uncovered.

There is no better finish line picture, than the one of us standing together triumphant, holding onto our blue ribbons and trophies, no matter how many stops and starts or twists and turns it took to get there. We got there, and that’s what matters.

 

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