Discovering New Stars

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.

Hula Hoop With Me: How friends with Down syndrome put a positive spin on our lives

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.

Finding yourself in the present moment: When you can’t press time on a child with Down syndrome

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. 

Living a Purposeful Life: Our Friends with Special Needs As Our Greatest Teachers

I see a lot of stressed unhappy people out there. And I wonder, how can we change that? I mean, we all have different battles to fight. And we all have different things that make us happy and sad. The online self-help bookshelves at Amazon have multiple aisles. There are therapists and any drug you can name that advertise relief.

With so many tools available, why do so many seem as stressed as ever? It’s like a competition to see who is busier. I overhead a conversation waiting in the check-out line at a grocery store. Two ladies ran into each other, and soon they were competing over who had less sleep. Is that really a competition you want to win? 

There is a difference between being purposeful and being busy. It seems that being busy is supposed to win us a gold star. But how purposeful are we really in our busyness? Are we missing the point as we run in circles?


I don’t have the answers, but it sure hurts to see so many people hurting. We seem busier but unhappier. I don’t believe there are any secrets but I do believe there are methods to being happier in life. And it does involve making some changes….in who you talk to.

I will tell you, every time I go to a special needs event I am filled up. Not just by the participants, but also those doing the volunteering. Now, I’m being very general here because everyone is an individual; but when you are talking and working with someone with special needs, for the most part, their learning style doesn’t so easily fit the norm. Most of us typical folks adapt even if it isn’t our preferred way of learning. But you can’t tell a child with Down syndrome to hurry up when they don’t want to. It ain’t gonna happen. You can’t talk to a child with autism in generalities, you won’t get through or you will have someone very upset on your hands. You have to slow down and think through what you are going to say. You can’t just force things. You have to look at things from their perspective. Now, that may sound stressful to some of you, and at times it can be. But here’s the secret…it gets you out of your own stressful world that continuously spins around in your head. It forces you to think above all that noise on a different plane. To broaden your perspective and throw in a dose of compassion. And even though you may have some very big things on your plate, these experiences have the power make them shift to a better place in your mind. 

At a recent Special Olympics function, I was sitting on the side of a hill with a few of the athletes. I struck up a conversation with two of the gentleman. One of them works at a nursing home. He stutters a bit, but that did not slow down his enthusiasm in explaining how he cleans the floors, makes the beds, takes care of general room clean-up. I barely needed to ask a question before he was answering it. I was thoroughly enjoying our conversation. I actually found myself almost to tears. I’m sure it was part happiness seeing this young man thrive as Wil will be a young adult in 6 years. But, mostly I think it was the pure joy I felt as a child. Sitting on a grassy hill in the summer sun and having an enthusiastic conversation. It was so refreshing. He wasn’t telling me how stressed he was to clean the floors, or how some coworker was an absolute jerk, or how he hadn’t slept in 3 days. He was a man grateful for his daily life and couldn’t wait to tell me all about it. I want to be more like him. Sorry, ladies competing in the grocery store aisle, my new friend is the real winner. 

So many of us are given more cognitive abilities than this man, and yet we use most of our time stressed to the hilt. I’m not saying that we do not have very important things to attend to. But what I am saying is that it’s ok to take a step back. To take a good look to be sure what we are doing has purpose to it. To find a purpose for growth and a broader perspective, and in some cases, great enthusiasm.

The next time I get stressed, or overwhelm myself, I’m going to bring myself back to the conversation on the grassy hill. Our friends with special needs may need our help to achieve certain goals, but we need their help just as much, if not more, to remember what a purposeful life is meant to be. 

Emphasis on Happiness

“Ok, Wil, here is your sandwich.”
“Thanks, Mom.”
“Uh, oh, there is a bite missing! How did that happen?”
“Awww, Mom, it was you.”
“Me? Huh, no way!”
“It was definitely you!”

“Definitely” adverb. Without doubt (used for emphasis).

Definitely is not a word essential to getting a message across. When kids start speaking, they give you the one or two essential words. “No!” “Hungry!” Soon, they start adding 2-3 essentials together. “Pick me up!” “You go!” “Wake up now!” And then they start peppering in the extras. No big news here, but it’s still darn exciting when those first words come, and then the second words, and soon there are short burst of sentences. By the time our kids are adding in the extras, we are on to bigger things.

Unless your child takes longer than others to put those essentials together. Eliciting one essential word may take multiple techniques to draw out. But here’s the bonus: With every single step toward a new word your perspective starts to change. You are so honed in on what is happening, the essential words become the extras. Words like definitely aren’t even on the radar. If you can just get one word, your whole world will turn upside down. And then 2 words, did your heart just burst in a million pieces for 2 words? Well, yes it did! You begin to notice every little change in sound, a rise or dip in tone, the process in formation of each blossoming word. And with all of that said, some words just bust out of your child’s mouth as if he’s been saying that word effortlessly for years. They will stare at you in awe as you jump up and down with joy for what they have no idea!

Wil has been speaking in sentences for quite some time now. We’ve moved on to working on initiating conversations: “Do you want to play Uno?” (be weary of accepting this invitation, the kid throws down Wild +4 cards with no remorse). Even so, I still feel a deep inner joy each time he spouts off a multi-word sentence. He’s started peppering his sentences with adverbs and adjectives now. They are quite impromptu. While most of his sentences contain the essentials, he’ll throw a little impromptu surprise party on an otherwise typical day saying that it was “definitely” me who took a bite from his sandwich. Then he walks off with his sandwich while I’m doing cartwheels across the kitchen floor.

“Down syndrome.” noun. Essential for happiness (emphasis on perspective change).