Category: Down Syndrome

This past spring, I wrote about an incident with Wil at the park. He would not leave and despite many tactics, he remained unmoving, so Katherine and I physically lifted him to the car. It was a very emotionally trying experience for all of us. That time stuck with me and I thought in my mind over and again how I could have done it differently if it were to happen again. Well yesterday it did.

The kids and I took a trip to Barnes & Noble. It’s one of our favorite places to browse. It has something for all of us. We wandered in and found our favorite places. The twins browsed teen books while Wil and I went over to the neighboring stacks to look at the multitude of games:

“Look, Mom! A shark game!”
“Oh, Squigz! I have Squigz!”
“Mom, see this!”

In-between looking at games Wil and I would wander over and see what books the twins were looking at. Katherine is into adventure so we read some book covers together to see what might be the most exciting read. Elizabeth is into drama, so we ventured over to that stack to see what held the most appeal. While Elizabeth and I were discussing some options, Wil started to badger Katherine. I knew we were getting close to the end of his patience level. I suggested Wil and I walk over to the young kid’s area where the Thomas the Train tracks are set up. The girls were close to making their selection so I asked them to find us at the train when they were ready.

Soon, Katherine and Elizabeth found Wil and I at the train, and with books in hand, we all made our way down to the first floor. Katherine and Elizabeth took the escalator down while Wil and I took the elevator (though Wil loves escalators, he won’t get on the Barnes & Noble escalator. It is out in the open and not enclosed by walls, so that may be the reason. Regardless, who doesn’t love getting to press the elevator button yourself and not having to share with your siblings). As Wil and I exited the elevator, we passed the music section. It is somewhat enclosed with one entrance and exit. I waved the twins over to indicate where we were going. Wil ran in the music area and started to look at all the DVDs. It was DVD heaven a mile high.

We all browsed the DVDs for awhile but soon Katherine and Elizabeth said they were ready to go to lunch. I had promised lunch at Panera bread.

“Ok, Wil, let’s go.” Katherine said.

“No!”

“Wil, come on, don’t you want Mac n Cheese at Panera? You love their Mac n Cheese.”

A few moments of consideration.

“No.” Then he sat down. Uh-oh.

“Hey, buddy,” I said, “come on, it’s lunchtime. We can sit outside, it will be fun.”

No response.

“Ok, 3 more minutes then it’s time to go.”

“Ok!” And he stood up again.

We browsed a few more minutes and I said it was now time to go. He responded by sitting back on the ground. We tried to coax him up but it was a no-go. Elizabeth offered a piggy-back ride which he usually accepts, but not today.

Like all of us, Wil needs to feel in control of his environment. At the park, we had a time crunch situation. We did not have that here, so I said, “Katherine and Elizabeth, I know we are all ready for lunch, but let’s give him some time like we did at Hidden Lake Gardens. We all like to feel in control of our environment. When he feels in control of his space, I’m sure he’ll be ready to go.” (Last summer, Wil was tired on a nature walk at Hidden Lake Gardens and decided he was done walking in the middle of a trail. When Katherine, Elizabeth and I could not coax him up, we gave him some space. We walked ahead, just far enough so he could not see us, but we could see him through the trees. After a few moments, he got up and willingly walked the trail, staying a few feet behind us, then eventually met with us on his own terms and we all ran down the hill together at the end of the trail.)

I had a coupon for the coffee shop, so I gave the coupon and some money to Katherine and Elizabeth.

“Why don’t you girls go to the coffee shop and buy a latte or iced tea, and I’ll give Wil some time and meet you at the coffee shop.”

“But aren’t we going to Panera?” Elizabeth asked, worried that we were now going to miss out on lunch.

“Yes, honey, we are. I just want to give him some time so he feels back in control of his space. You know how that feels. Just get a drink now, and we’ll have lunch at Panera in a few minutes.”

“Do you want me to get you a coffee Mom?” Elizabeth asked. I love that girl!!

“Thanks, honey, I’ll get one at Panera, you go ahead and get what you want and I’ll meet you in a minute.”

I watched Katherine and Elizabeth walk off together, chatting about what they were going to get. They sure are growing up. I’m very proud of all they take in stride.

Wil was still sitting on the ground. I said to him, “Wil, I’m going to the coffee shop to meet your sisters. When you are ready, you can find us there. See you in a little bit, Buddy.”

Thankful there was only one entrance and exit to the music area in this situation, I walked out of the enclosed music area and stood just behind a book stack waiting for Wil to exit. In only a few minutes, Wil walked through the music area into the main bookstore and looked for the coffee shop. I didn’t want him to see me right away because I knew he needed this independent time to feel in control of his situation or he’d be right back on the floor unmoving. I followed him to the coffee area and there he exclaimed, “Sisters!” and walked over to his sisters and gave them a hug.

“Great job, Wil! Are you ready to go to lunch now?”

“Uh-huh!” He was so proud of himself for making this trek on his own.

Hooray, success!! As Wil gets older he wants more and more independence and he deserves more independence. It’s important for his confidence and his development into becoming a young man. But there are certain dangers that he does not comprehend and I need to be there at an arms-length distance. I’m thankful in this situation I was able to do both.

Back at the park, I knew I could have done better, I just didn’t know at the time what that better was. I pondered that incident and realized what I didn’t give Wil was time and space. In fact, that’s what we all need; time and space. It’s just in different doses. Since I was in a time crunch at the park, carpooling kids and needing to pick Elizabeth up at a certain time, I placed that time crunch on Wil. We tend to focus on very few options when there is stress involved. Yet, there are always more options than we allow ourselves to see at the time. Having the benefit of hindsight, I promised myself if a similar situation were to happen again, I would take a deep breath and think of more options.

There is this quote that I love by Maya Angelou: “Do the best you can until you know better. Then when you know better, do better.”

Yesterday I was thankful for the opportunity to do better. To find options that gave Wil the time and space he needed while also giving Katherine and Elizabeth the time and space they needed. Seeing my three kids hugging in the coffee shop, I knew that day, I did better. That is a wonderful feeling, indeed!

As 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.

There is a small group of moms sitting together at a local restaurant. Those with long hair have swept it into a quick ponytail, shorter hair  tucked behind the ears, lightweight coats shed on the backs of their chairs, bare arms exposed under bright colored shirts, elbows resting casually on the table, or gently crossed as they lean back in their chair, relaxed.

These moms laugh comfortably and easily with one another as they intermittently sip on a cool drink of iced tea or iced coffee. It’s an unusually warm day for early May in Michigan.

After a time, the table falls silent, as one of the moms quietly tells of recent challenges with her daughter. They all lean in slightly toward her, and tears fill their eyes as they listen. One mom reaches out a hand, and touches this mother’s arm as she pauses in her story. They all nod in understanding, this life is too much sometimes, and they offer words of encouragement and assurance.

Soon, it is time to go, so they all get up, and walk together toward the car, taking their warm energy with them. The table is now restored back to its former emptiness.

If I had observed these moms 8 years ago, I would have been in awe of their emotions. How can they laugh at such challenges raising children with special needs, from the big to the small that they handle every day? I would admire their strength and courage, and the old adage would pop into my head to be thankful for my life, because someone’s troubles are always more difficult than your own.

But, I was not an observer at this table, and it is not 8 years ago. It is the present day, and I am one of those moms at the table. I shared fully in the laughs and shared my stories of victories and of challenges, both big and small. I am one of those moms who understands fully the tears of frustration, and cried together with my friends.

I am so very thankful to be one of those moms at the table today, and it’s not because my troubles are better or worse than another.

I am thankful because I get to call these strong, beautiful moms my friends. I have grown greatly in this life with them. That’s a lot to be thankful for.

HAPPY MOTHER’S DAY to all of you strong, beautiful women! May we continue to share and grow together.

“You know that it’s only going to get harder.”

“You know that every year won’t be as good as this one.”

“You know that adulthood is going to be challenging.”

What I do know is I was left to my own devices to navigate this whole Down syndrome thing. What I do know is it was hard. What I do know, more than learning new medical terminology, most important is emotional support. What I do know is once emotional support is uncovered, the envelope of comfort and strength derived is undeniable.

What I do know is every experience is not required to be conventionally good to see good in it. What I do know is the celebration of this good is not akin to wearing blinders to the surrounding challenges. What I do know is this good is a powerful beacon in navigating the challenges.

What I do know is this world is not made for people like Wil. What I do know is I will stumble and I will fall, and I will stumble and fall again and again finding our way. What I do know is I will not stand still to save myself the fall.

What I do know is I will keep my head up, in anticipation of the good in every experience, no matter the form that comes in. What I do know is I have faith in this walk, and the friends that walk this path with me. What I do know is faith and connection with others is a positive and powerful force that shines a light on the deepest darkness.

What I do know is not everything will work out as I plan. What I do know is that will not stop me from pursuing new experiences. What I do know is much unexpected and unplanned successes come from these forward steps.

What I do know is this path is bumpy, with plenty of twists, turns and challenges. What I do know is those are exactly the places I have met extraordinary people, and have found myself in an extraordinary place to help another.

What I want you to know is life doesn’t have to be challenge-free to know we are blessed.

I have given up the R-word fight. I will do it no longer.

I am done, fini, the end.

Fights take so much darn energy, they are not sustainable over the long term, and at the end, there is always a winner and a loser. I don’t want any losers in this fight, it’s too important. I want to find a way for us all to win in this. The only way I know how to do that is to share.

So, I’ve put away my R word boxing gloves, and replaced them with a keyboard, and share my heart out to you.

You see, I once used the R word, because I didn’t understand the power that word held. I didn’t need someone coming up and telling me how very wrong, awful and hurtful I was for saying it. And, if we are trying to avoid those wrong hurtful feelings, why fire back with them? To change, I needed someone to help me change my thinking. I needed someone to help me understand why it was wrong.

Now that I have the privilege of raising my sweet Wil, who has Down syndrome, I know, first hand, how very hurtful that word is. A word is not just a word. I know better. I know better, because I know my son. So, to help you understand the hurt of that word, I want you to know my son, too. You may never get to know him like I do, and that’s ok. I just want you to know him enough through my words, that you can feel a compassion for him. A compassion for the work he has to do, and all of the support and emotions that surround that. It is not an easy life, but it is such a beautiful life, and it is very hurtful to have my son hear a carelessly used word to degrade that.

So, I will not whap you in the nose for using the R word. Instead, I will invite you into my son’s world, so you may get to know him. And, when that word is about to escape your lips out of habit, you will pause first. Not because you remember “you aren’t supposed to say it.” You will pause, because, now, there is something within you that feels it’s wrong. You know deep inside that it just isn’t right, and so choose to express your feelings in a different way.

So, come join me, no boxing gloves needed. Sit, get comfy, let’s have a chat, and get to know each other.

We are all winners here.

“Take Woody for a walk all by myself!”

Katherine recently returned from taking Woody for a walk in our back field, and now Wil wanted his turn. We take Woody on lots of walks together, so I was fairly confident Wil would take the same route. We live on 10 acres which I can see the full of from my back window. But the county land that abuts our property he would most likely also traverse is beyond the window’s view.

Wil has quite a bit of self-motivated independence. He now walks behind the school every morning “all by myself” to his classes line, he hops off the bus after school every day and walks the long length of our country driveway to the house (I used to meet him at the bus’s door), bursts through the door with a “Mom, I’m home!”

So, I conceded this walk “all by myself” with the condition he wore his bright orange vest over his coat so I could easily spot him. He quickly grabbed his hat, gloves and boots, and like a shot, was out the door. A boy and his dog.

As I watched him walk further and further down the field, it was such a strange feeling. Both exhilarating and scary at the same time. For so many years, I’ve been ultra vigilant with Wil because he was always prone to running off when he was younger. He does not take off on a whim like he used to. We can walk through the grocery store without Wil quickly bolting for an Employee Only door or outside. Yet, I still hold his hand tight crossing the street because he quickly forgets the warnings of how cars can badly hurt you in his excitement to get where we are going.

I watched him turn the corner to the county property, and the sight of his orange vest disappear. I will give him some time, I thought, and then, if I don’t see him, I’ll take the 4-wheeler out to meet him.

I washed the dishes, with an almost constant look out the window, no orange vest. Let him go, he’s ok. I decided to vacuum, and I just couldn’t. It was the noise. It blocked my senses too much, as crazy as that may sound. There was no way I could hear Wil way out in that field, but it didn’t matter. I turned off the vacuum, and put it aside for later.

There was still no sight of Wil, so I went out the garage to start the 4-wheeler. It was cold, and it reluctantly started. As soon as I put it in reverse, the engine died. I went to put it in neutral again to start it, but the gear was stuck. “Don’t do this to me now! Come on!” I kept at jiggling that stupid gear shift and it finally clicked into neutral. I started it up again, revved it for a bit, then flew out of the garage in reverse and busted tail down the field.

And, there, rounding the corner to our field, as happy as could be, were a clear to the knees mud covered Wil, and Woody, with his own smile (you can always tell when dogs are smiling). As relief washed over me, I felt a little ridiculous over my nerve-wracked fight with the 4-wheeler moments before.

Wil hopped on the 4-wheeler with me, and off we sped toward home, the dog bolting after us, mud kicking up from his feet, and I felt so incredibly free. We crossed an invisible line that day, both gaining a new perspective in growth.

The next day, Wil asked to take Woody for a walk again “all by myself.” It was easier, though I still had those nagging feelings in the back of my head. Those may never go away, my guess is they just change over time and circumstance.

I wasn’t able to vacuum, but he did make it all the way home before I jumped on the 4-wheeler this time. They both strolled back to the yard, not muddy this time, but no less jovial for the trip of  independence; Wil pink cheeked and Woody looking happily exhausted.

I guess that’s how this getting older thing will be. The push and pull of independence. Wanting to have my hand there to grab hold of his when he needs it. The 4-wheeler, at the ready, just in case. And, the sheer joy that lifts my worried heart when he shows up, pink-cheeked and full of stories and smiles, from his newfound adventure, all by himself.