There is something about people with Down syndrome that make strangers smile.
There are the warm, friendly smiles. These are those who have an acquaintance with Ds or have a positive image of people with Ds.
Then there are the he’s-so-darn-adorable smiles—just because he is and it makes you smile.
There are smiles of sympathy (those are where they look at Wil with concern, then the smile appears when they look up at me and there’s a sadness in their eyes).
Then, my absolute favorite, is the knowing smile. They look at Wil a little longer, and this far off smile appears on their face. You can feel the connection. Then they look up at me like we know each other—their smile says “I know you even though we haven’t met yet.” Sometimes they will share with me about the person they love with Ds. Sometimes they won’t. Either way I know they love somebody with Down syndrome. It’s a beautiful connection, if only through a smile.
When you go to a Special Olympics event, there are some participants who talk to themselves, there are some participants who decide they are done and sit right down on the spot, there are some participants who decide to break out in song, there are some participants who spin in circles, there are some participants who hold things for comfort, there are some participants that go around talking to everyone they see, and the list goes on. And there is always a volunteer to support them.
Most of these participants live in a world not made for them. They are constantly learning to function in that world. This takes a lot of work on a daily basis for both them and their caregivers. The Special Olympics and other such events for our kids is a breath of fresh air. Our kids have the opportunity to learn, grow, showcase their talents, all while being exactly who they are. To an outsider looking in, this scene may look strange, but to us it’s downright refreshing. Everyone “gets it.” We get to take a step back, to not always be on guard of where our kids may run off to, when they may shut down, or how they may fall apart. Our kids can be themselves without judgement and without reservation in a world designed for them to do just that.
“Come on, you have your ear protectors on. It will be fun. Remember you wanted to go to the movies?”
The three of us stood there, Katherine Elizabeth and myself, juggling popcorn buckets and drink cups, in the hallway just outside the entrance to the room where our movie would be playing. Wil sat on the floor, smack dab in the center of the entrance. We had made it this far with very few signs of resistance, then plop! He wasn’t going in.
Looking back, there were a few small red flags. When I ordered popcorn, Wil said he didn’t want any <red flag>. I ordered him a small bucket knowing he would change his mind. When it came time to fill up his drink cup he perked up. He reached up to press the button of his drink of choice, slid his cup under the fountain and filled it to the top. He was one happy guy holding his cup walking down the hallway <red flag down!>. All four of us walked down the hallway with our treats, until Wil came to an abrupt halt just as we were about to enter the room. Plopped on the ground. And here we were.
“Wil if you aren’t going in, can you at least scoot to the side so people don’t have to walk around you to get into the movie?” A few kids that sat on the couch across from the entryway were staring at us. It’s always strange to be stared at. But I think it’s a good thing. This is our normal. Everyone has their own version of it, and the more we see other forms of normal, the less we fear them.
Wil scooted across the floor away from the entrance.
“Great, job, Buddy. So what is going on here? It’s not that loud in there. And you wanted to see the movie. So can you help me understand?” I received no response, though I really didn’t expect one at this point.
“It’s going to be a funny movie. Hey, we might even laugh til we wet our pants. How about that!” He looked up at me, with the faintest smile like he really wanted to laugh, then put his head back down. He wasn’t ready to be that open yet.
“Is it the popcorn? You don’t have to eat it.”
The previews started rolling and Katherine wanted to go in to watch them. “Mom, I can carry in Wil’s popcorn and pop.”
“Thanks honey.” Katherine gave a big bear hug around both her and Wil’s popcorn buckets with drinks in each hand and made her way into the theater. I thought of all the times the girls need to be patient. Katherine, Elizabeth and I all need to work as a team. While Katherine took in our supplies, Elizabeth stayed out with me to help encourage Wil into theater. This is our normal. People were streaming by us into the theater. Wil remained un-phased by the traffic and the boys staring on the couch.
Elizabeth worked on convincing Wil to enter the theater by asking more questions with very little response. For whatever reason, Wil resists piggyback rides from any of us except Elizabeth, so she pulled out the big guns, “Wil do you want a piggyback ride?” This is not so easy anymore with Wil weighing 104 pounds. He stood up and Elizabeth gave him a ride into the theater. Once he was in the theater, it was like he crossed a mental barrier as much as a physical one. He laughed as he reclined his seat. He asked to hold his own popcorn and placed his drink in the cup holder. And, as promised, we did laugh during the movie, but thankfully evaded any pant-wetting.
The previous week when Wil and I went to the same theater for a Down Syndrome Support Team event to watch Frozen 2, there were multiple other kids with Down syndrome who also decided that they did not want to enter the room where the movie was being shown. My guess is they were full of excitement to see Frozen 2, but when at the threshold, they found some part of the experience overwhelming. Be it a new room, anticipation of the event, concern of loud noises in a populated room or experiencing the unknown. Without the verbal communication skills to express those emotions, the physical communication is expressed as coming to a complete stop as to stop what is happening. On this particular occasion, Wil entered the theater without incident on that day, but I fully understood what was happening with the kids stopped at the entrance, as did everyone else in our Down Syndrome Support Team. There was no staring with the wonder of what was happening. This crowd of parents and siblings have all had been there, done that. This is our normal.
When Wil was very young, we were part of a playgroup. Wil’s favorite pastime was to find the door and escape as quickly as he could. I had to keep an eagle eye on him or he would be gone. I had to leave the twins with another mom and chase Wil down the hall again and again. He was the only one who did that with very few exceptions. Most of the kids were content at that age to play together or with all of the toys in the room, or if upset, sit down crying. But not Wil. His intent was to escape at any chance he could find.
Then I started hosting Down Syndrome Support Team play dates. 90% of the moms there spent the majority of their time with the same eagle eye, because their kids first priority was to exit the door. As challenging as it was, it was all of our normal.
Katherine, Elizabeth and I recently went shopping with Wil. We all know that our time is limited when shopping with him as he will run off or take a seat in the middle of the store when he is tired. We watch for the cues. It’s a team effort. We went to one store and I took him for a walk while the girls shopped and tried on outfits. Wil and I would circle back around to where the girls were shopping so I could see what they liked, or answer a question, then we’d circle around again. We made it through that store without incident. Then onto one other store. We tried the same tactic but I could tell Wil was falling apart. He started running and taking off. I saw a friend, Julie, shopping with her daughter. I waved and said hello as I followed the top of Wil’s head through the aisles of clothes.
She said, “How are you doing?”
“You know, just chasing Wil as per usual!” Julie knows Wil, has 4 kids of her own, and is a teacher, so no explaining was necessary. She nodded her head and smiled.
Following Wil, I ran into Elizabeth. I told the girls we had limited time. Elizabeth said that was fine, she didn’t see anything she liked anyway and was ready to go. We walked together, following Wil, to give Katherine some extra shopping time. For whatever reason, during Wil’s running he decided he wanted a vest. A $250 North Face vest. He pulled it off the rack to show it to me. I agreed it was really cool, because it was. But he was not getting a $250 vest as cool and well made as it was. He was not happy with that and decided to run around the store again. When he gets like this, I prefer he stay on the move, because if he drops on the floor, it’s really hard to get him back up again. The flip side is, he can easily decide to run out the door.
Elizabeth and I both looked at each other and telepathically exchanged it was time to go. Elizabeth said, “I’ll text Katherine to meet us at the car.”
I told Wil we were leaving and he made a sprint to the door. I put my arm around his shoulders and slowed him to a walk.
“Why your arm on me mom?”
“Because we are headed to the parking lot and we need to be safe.”
“So I’m not flat like a pancake.”
We made it to the car, then off to lunch. It was time for us all to sit in one place and enjoy some time together, which is exactly what we did.
Elizabeth came home from school one day and shared with me that her gym teacher, Mrs. April Stewart sat down with her and a few other friends. Elizabeth said there was some downtime in the class and Mrs. Stewart shared some stories about her sister with Down syndrome. Elizabeth said they laughed about the similarities between Mrs. Stewart’s sister and Elizabeth’s brother. How they could be absolutely unmoving and headstrong, but also openly and unconditionally loving. Elizabeth told me how special these conversations are to her. She said you really can’t understand what it’s like to have a brother with Down syndrome and it’s hard to explain. But Mrs. Stewart really understands. She said that she also likes the others in the group to hear these stories so they can understand, too. Elizabeth said sometimes Mrs. Stewarts gets tears in her eyes talking about her sister. She knows she really misses her. I had tears in my eyes too after Elizabeth shared this with me. (April and I met at a basketball meeting for our daughters, Elizabeth and Maggie. April saw Wil running around the gym and asked if he was my son. She then shared she had a sister with Down syndrome. We instantly became friends with our special chromosomal bond.)
In many ways I feel like we live in two different worlds; the typical world and the Down syndrome world. In our Down syndrome world, what Wil does is completely normal behavior. The stops at the entrance of the movie theater when it all feels too much. Or the sprints out the door when the shopping has gone on too long. But Wil has two typical sisters and we live in a typical world. So we must balance the two. Wherever we go we must be prepared. It’s is always a guessing game of how long Wil will last, and watching for the cues of his being tired. Because the typical world moves much faster, is a lot louder and has much less patience than the Down syndrome world. In the Down syndrome world we stop when we feel overwhelmed. Or we bolt because it’s much more appealing to run down an open hallway than to be overstimulated by the multitudes of activity crowded into one room. In the typical world we crave this activity, more is better. We crave distraction, and we must pack in as much as we can in a very short time.
It is a delicate dance to balance the two worlds. Katherine and Elizabeth understand this dance and they do it very well. I’m always amazed at how well they roll with it and we make it all work as a team. I’m thankful for the Mrs. Stewarts of this world. It’s of great importance for Katherine and Elizabeth to know others who balance these two worlds. These friends are our bridges–where our normals are broad and in-between; it is a place we can laugh and cry together with no explanation needed, because our understanding is whole on this well-traversed common ground.
He said mom, look at me, and he placed my hands on either side of his face. I looked at him. At first what I was doing screamed for attention. I did not have time. But he smiled, and I melted into his little face. Those almond eyes, his soft innocent stare that only asks for all that I am. He wanted his mom, not half of his mom, but all of his mom. We all want all of who we are with, and all of who we are, but along the way we forget to ask. We forget to ask that even of ourselves. He doesn’t forget. Thank God.
So then, for that day, by virtue of that moment, I am brought back to life. Back to a place I didn’t know I lost because the distractions filled my life of all the empty spaces. His hands on my face cleared the room. The empty spaces become empty again. It is not sad. It is a feeling of freedom. Life zooms in full focus to his face, and that face is everything. I am filled with a peace, a love, that I was born and created with, but had forgotten a long, long time ago.
We know that peace holding our babies. We can stare at their sweet, innocent faces with their gurgles and giggles, and their sleep for hours. Everything else sheds away. They are our everything. Then they start crawling, and toddling, and soon they find new independence. Though they are still our everything, distractions start finding their way into the periphery. Our kids soon pick up the habit of distraction just as we did–from our parents, from our environment, from responsibility. It just is what it is. It happens so very gradually, we don’t even notice until our life is full, so we think.
Until one day, you are awoken. It happens in the simplest of ways. Because that is how the true joys of life are–simple. I was washing dishes, my mind not even on the dishes. I was a million miles away living with the million other things that I had to do and what I already had done. A voice cut through the swirling galaxy of my thoughts and said, “Look at me mom.” The voice interrupts but the distractions need to be heard. They will not lie down for a simple interruption. They have been born of habit and so persist. “What do you need, Buddy?”
The voice beckons again, but this time, he walks up to me and places his hands on either side of my face. They are like paddles shocking me back to life. The distractions cease. They don’t fade to the corners, they lift and fade into the ether. My Life is back into rhythm with what matters. This is not another distraction pushing out the distractions, like a drink, drug or food. This is real. This is God talking. This is where we shut up and listen.
Underneath all the noise, he wanted his mom. He wanted me to see him, to know he was there. Not partially, but fully.
We all want to be seen fully, to be heard fully, but we learn to live without it. I’m not sure what it is in Wil that he did not learn that part of life, but I’m sure thankful that passed him by. I don’t listen to others as well as I should, but he reminds me to stop and listen. Not partially but fully. Whenever I stop, and turn my head to who I am with or what we are doing and fully listen, life immediately feels fuller. Because that is how the true joys of life are–simple.
When Wil was a baby, I declared Wil would get his high school diploma. Wil would have full inclusion in the classrom. Wil would drive. Wil would go to college.
Today, I still have high hopes but they look a lot different from those early declarations. Wil is not going to get a high school diploma. He will earn his Certificate of Completion. Wil is in 7th grade and reading at a beginning 2nd grade level. Does that sound sad to you? It may have to me those many years ago. I may have believed someone wasn’t doing their job.
Today, to see him sit down on the couch, put on his glasses and read a beginning reader’s book is one of my greatest thrills. Or to drive with him in the car and hear him read billboard signs fills me up with a happiness you can’t buy.
Why? Because I now know the steps it took him to get there. And there is no way I could have known what those steps would look like when Wil was a baby. I had to take those steps with him. Day-after-day-after-day.
Those early high hopes were important. They gave me stars to reach for. But as we moved further along the road upwards toward those stars, I saw some where just not going to happen.
Wil works hard, when he wants to, but no matter how hard he works the reality is he has certain limits. He processes words slower. He moves slower. Wil also spends the majority of his time at school in the resource room. The full inclusion I envisioned for him is available, but it’s not the best thing for him. He simply can not comprehend and keep up with all the studies his typical peers are doing. He still spends time with his typical peers in gym, science and social studies. But he learns reading and math in the resource room, along with life skills.
Now Wil is going through puberty. Every morning is a true test. He needs lots and lots of encouragement to get out of bed. If there is any forcing to get him out of bed, his whole day could be set back. It’s hard emotionally, for me. Every morning I need to steel myself for the long haul. For no missteps. I know we will get through this. But right now it’s hard.
I’m entering a new chapter with Wil. I relate it to when he was born. I’m navigating a new place I have not been before. When he was born, I wanted to know what Down syndrome was all about. I could read about it, but I didn’t really know it until I lived it. Travelled alongside other parents on the same journey. Now I’m navigating “What is Down syndrome with Puberty?” I’m traveling alongside other parents. This is an emotional journey and it’s extremely valuable to walk with others who understand not just what it looks like, but what it FEELS like.
Puberty is challenging for anyone. But you tie in communication and comprehension barriers, and it’s a whole new learning experience. Right now I can best equate it to a tall-hedged maze. I can’t see where we are going, or what direction to turn in, but I know we will eventually make our way through. We walk down one aisle to find a dead end. We walk backwards, retrace our steps to where we were, and try a new direction. We hit another dead end. We walk backwards again, start over, and find ourselves further this time than before. Progress! We build on that, get a little further, find another dead end, but know we are closer. We try again.
Never, ever dismiss the power of a 12-year-old boy reading at a beginning 2nd grade level. You may never know the emotional strength and steps it took to get there. We still reach for the stars, but in a different way. At first, I thought reaching for the stars was about achieving certain goals. But somewhere along the way I found the real stars are where we make true emotional connections along this mazy path.
Yesterday evening, when I left for work Wil’s comforter was still in the wash machine. I told him I’d put a different one on his bed. As I fanned it out over his bed, before it had even fully settled, Wil jumped up and landed spread eagle across the comforter on his bed. He closed his eyes, smiled and uttered an, “Ahhhhh.”
I’m not a scientist. I’m not a psychologist. But I do know one thing. Spending time with people with Down syndrome sure brings out those feel good feelings we are all looking for.
And it’s a lasting happiness. Each time I see that comforter fan in the air and Wil jump up upon it and live his simple joy out loud, I’m lifted a little higher. It may be simple, but it is no less powerful. I can do today in a better way. I truly believe a positive biochemical change happens in us spending time with people with Down syndrome. Our instinctual feel good hormones are released naturally, without the aid of substances.
I have a vision — a vision of a large gym room. Wil is there. Friends with Down syndrome are there. They are jumping rope. Twirling with hula hoops. Shooting baskets. Some basketballs “swooosh” through the basket while others bounce off the backboard. Wil is attempting with all his heart to keep the hula hoop around his hips. It continues to fall to the floor. He laughs, picks it up, and tries again. A small group of “typical” individuals who are struggling in life walk in. They are desperately seeking happiness. They may be overly competitive. Have social anxiety. Low level energy. One grabs a hula hoop. Another picks up a jump rope. And some others gather to shoot a baskets. The social anxiety kicks in. They can’t hula hoop. They haven’t jumped rope in years. The intensely competitive feel their juices flowing. I’ll hit every one of these and drown these suckers. Wil urges the woman next to him to try the hula hoop. His laughter as the hoop falls and he picks it up again is contagious. She tries. Hers falls. She picks it up again. She still feels self-conscious. Others are watching. But Wil encourages her. She tries. She finds the trying is more fun. She forgets others are watching for brief seconds at a time. This is the most fun she has had in years.
Our competitive friend shoots and sinks every basket. Another friend with Down syndrome congratulates him. He starts to talk to him. Our competitive friend can’t quite understand. He nods his head like he does understand. Who has time for this? He’s got things to do. But does he? The two guys shoot more baskets together. They start to talk again. Our competitive friend really has to listen this time. He’s been asked a question. He has to talk a little slower. They get into conversation. They shoot more baskets. Though their success rate differs, they both find each other congratulating or encouraging another effort. But now it’s time to go. Our competitive friend doesn’t know what just happened, but somehow, he feels like he just took in a huge breath of fresh air. And he hasn’t done that for a long, long time.
They meet again in the gym the next day. Our friends with Down syndrome yell out the visitors names and run up for high-fives, fist-bumps and hugs like long-time friends though they have only met the day before. They pick up the hula-hoops, jump ropes and basketballs. They pick up right where they left off, but somehow feel years lighter than only a day before.
They come back again the next day. And the next. And the next. They start to make real friends. They get better at shooting baskets, jumping rope and hula hooping. Those that made their first full twirl before the hoop fell are congratulated just as enthusiastically as those who just hit their 20th. What is recognized is doing better than the day you did before. Each and every day, big enthusiastic greetings are the norm. The talking is slower, the listening needs to be more intense. While this may have first resulted in impatience in our visiting friend’s “outside” life, they begin to see how gratifying slowing down is. How taking time to listen is actually a “feel good” mechanism. Go figure.
Our visiting friends find themselves bringing some of these attributes to their life outside of the gym. They greet others more enthusiastically. Genuinely. They listen. Like really listen. They’ve slowed their roll some, but notice they actually have made stronger connections. Their accomplishments take on a different meaning. They are more fulfilled for the connections made. In that, they are able to honor their own achievements as well as others.
I can be any of those people that walk in the gym. I can get overly competitive. I can get anxious about what others will think. Heck, even sharing this post I can hear you saying, “What kind of utopian world does she live in thinking this gym vision would have any impact?”
But here’s the thing, I walk into that gym every single day. And thankfully I also come back the next day. And the next. And the next. I need the reminders the gym life has to offer. Because the outside world does everything it can to take me away from what is important. How amazing is it that I am greeted enthusiastically every single morning? This fact alone makes me want to greet others the same way. Slowing down is a toughy for me. But my goodness, how incredibly rewarding that is once you do it. To listen, to offer your best self, whatever that looks like for you. Not in comparison to another. And all the while, finding a way to have fun doing it.
I meditate. 10 minutes a day. With Headspace. I get to choose when and where I meditate. My chosen 10 minutes of living in the present. It is bliss. It is zen. It is being. It is da bomb.
But being put in the present moment when it’s not my chosen 10 minutes? Is there a fast-forward button on this present moment thing?
Last night Matt and I both got home about 7pm. Wil had two sheets of homework. Just one sheet, depending on Wil’s mood, can take hours or minutes. Currently Wil is congested. So he’s tired. Hours, rather than minutes, was the likely scenario. We usually start homework about 4:30 so Wil can take multiple breaks, if needed. Knowing I’d be home later, I asked Katherine and Elizabeth to work on one of the sheets with him, giving him breaks, and I’d complete the rest with him when I got home. Katherine and Elizabeth are very good at doing homework with Wil, and he enjoys his big sisters’ help. But even they could only elicit 3 answers of the 25 questions from Wil.
In the end, pulling out all the silliness, encouragement and creativity we could muster, 7 questions were answered of the 25. The other sheet remained completely blank. Wil went to bed and immediately fell asleep. I did the same. It was exhausting for all of us.
You can’t press time on Wil. The minute he senses force, he responds with like force. Taking breaks is a necessity. A brief break can save hours. He requires encouragement. Silliness always wins. Creativity a must. Some days are a breeze, and other days, like last night, are stumpers.
On school mornings, I wake Wil up knowing it will take him 10 minutes to get out of bed. He requires a hug first. Then another hug. And another. And another. Then tickles and lots of giggles. Then we decide on what is for breakfast. Eating breakfast is a hot topic. He loves to eat, and it’s usually leftovers from dinner or a sandwich. He’s not into cereal. After breakfast, brushing his teeth is another process. He is a sensory kid. This too requires patience, silliness and creativity. Some days, brushing teeth is left until after school because of the time it can take.
All of these moments with Wil require me to be present. If I press time on him, then it’s like taking 2 leaps back. Though I can predict these times with a fair amount of accuracy, they are not my chosen times to be in the present. This can be admittedly frustrating. When time feels too short to be in the present moment. Can we just move this show along already?
At this point in my life, I don’t believe that being in the present moment is filled with bliss. That is, if it’s not at a time of our choosing. When I really want to press time on Wil, but know I can not, I have to find my silliness. I have to find my creativity. I have to find another well of patience. Some days I do better than others. When I reach a point of losing my cool, I get more creative. I get sillier. And my well deepens even more. So while the present moment is not what I’d call bliss, I’m still deeply grateful for my growth in it. Because I can’t press time on Wil, the present moment presses on me to grow. Maybe that is the lesson of the present moment–growth and gratitude. At least that is the theory I’m going with right now. And I’ve got about a million morning hugs to back that theory up.