Down syndrome

Discovering New Stars

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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.

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

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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

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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

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“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).

Do You See the Yellow?

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2013 Calendar-April

I’m not sure what grade I was in, but I do know I was quite young, when my classroom teacher placed a picture on each one of our desks. She casually asked the class to take a look at it, and then, after a few seconds, she asked us to flip the picture over so all we could see was the white back side.

“Without turning your picture back over, who can tell me anything in your picture that was yellow?”

I wracked my brain yet I couldn’t remember a single yellow detail. Not a one!

A few hands shot up, and I looked around dumbfounded. How could I have looked at that entire picture only moments ago, and not remember anything that was yellow? What else didn’t I see?

Though I didn’t consciously register it at the time, this was an “ah-ha” moment for me. I was beginning to realize that though I believed with every fiber of my being I had seen the entire picture, I was really only recognizing what I had chosen to focus on, whether consciously or not.

Some 40 years, a husband and 3 children later, I found myself rushing around the house on a Tuesday night. Katherine and I were to leave for taekwondo within the hour, dinner was cooking, Wil had a book to read to me, Katherine and Elizabeth were intermittently asking for help with their homework, and I was still yearning for a shower since teaching a 2pm bootcamp class. Once dinner and homework were successfully completed, I zipped across my carpeted bedroom floor, headed straight for the shower in the adjoining bathroom, the movie reel in my mind replaying the same hurried thoughts over and again. Then, just as I was quickly padding past my bed, the glint of something at the edge of the bedskirt caught my attention. My mind and body stopped fast in their tracks.

Time seemed to stand still in that moment, and I felt my entire body relax and I found myself laughing. I bent down, picked up that small, seemingly inconspicuous penny, squeezed it lovingly in my hand, turned my gaze up to the ceiling, and as my mind’s eye opened to a full picturesque view of the sky beyond that ceiling, I said aloud, “Thank you!”

I like to think of pennies as angel signs. Heavenly messages placed right in my path, found specifically in those moments when my head is turned down, my focus fast and narrow, as I speed walk through life, so many pieces of the picture passing me by, unseen and unrecognized.

I took a fresh, new look at the picture around me and where I was headed. I still had a very short amount of time to work within, but instead of feeling rushed, I now felt invigorated and energized. The reel in my mind was no longer repetitious, but reveling in the moment and looking forward to where we were going. Katherine and I breezed out the door and enjoyed a car ride to her practice full of conversation and laughs. My picture was getting brighter by the moment.

Nothing had changed except my view of the picture, and that is exactly what changed everything around me.

Positive thinking gets a bad rap. It’s easily misunderstood to be merely a change in attitude, when in its most effective form, it is a consciously made choice to shift our perspective and take a new and fresh look at the picture around us. About a year ago, I watched a video of a speaker who, because of a disability, has never been able to walk, so spends the majority of her day in a wheelchair. She was very candid about her situation, the many challenges she faces on a daily basis, and also, the way she is treated by others. I saw the world through her eyes, and looked at different parts of the picture I had never seen before. I appreciated all the new places she was opening my mind’s eye to. Then, at one point in her speech, she joked that positive thinking didn’t get her very far, she could smile at a staircase all day long, but that surely wouldn’t get her to the top!

The audience laughed, and her message was received, but to me, that is too narrow of a view to be considered positive thinking. In her example, she placed the staircase, the obstacle, in the center of her picture, and put her full focus on that. A change in attitude was not going to do a thing to change her situation when the obstacle is sitting front and center.

But, a shift in perspective, well, that could make all the difference.

When Wil was born, his diagnosis was a big, huge staircase plopped unexpectedly right in the center of my picture. I couldn’t see around it because that’s all I focused on, and reasonably so. First, I cried about it. It wasn’t supposed to be there! My son was not supposed to have this climb! I listened to my friends, and all the milestones their typical children were achieving. I saw how quickly their words came, how fast they went from crawling to teetering on two feet, and how they entered pre-school without the need for extra therapies, a teacher consultant, detailed progress reports and IEPs. I had a tall staircase to climb for my son and at first that was all I could see.

Then, as time went on, I knew I needed help up this staircase. It was too big an obstacle to handle on my own. I couldn’t continue to cry at its base and expect it to move, or blame it for being there, or even smile at it and hope with all hopes it would go away. I needed help figuring out how to climb it or get around it. So, though I didn’t know what I was doing, I put myself smack dab in the center of the picture by asking myself, what can I do to make this situation better?

I knew there was more to this picture, even though I had no idea what it was and couldn’t see it at the time. I positively thought and fully believed in that fact and opened my mind to look for it, even though I had no idea what I was looking for. I boldly went out blindly in search of the yellow, in any form, and that is when I met some pretty amazing people.

They, too, had big staircases in their pictures. In fact, their staircases were a lot steeper and slipperier to climb than mine. They had diagnoses that came with Down syndrome, like heart defects and leukemia. These were the people that helped me see yellow in spades. Not because my life was less complicated than theirs, but because they opened my mind to so many more pieces of the picture. Because of their challenges, they have bravely traversed roads I never even knew were there. I don’t envy myself that I do not have their challenges, rather, I gain strength in knowing how high and steep they climb, every single day, when many of us a cursing stumbling upon a rock. And when they can’t climb, how they look and look to find a new road, or they work with all their might to plow a fresh one. And, most bravely of all, when they are stuck at the base, and simply do not know which way to turn, they lean on a friend, and together they march forward, bruises and all.

So, now, when I have a busy day and I forget to look up, or when life is hitting me much harder than that, I try my best to remember to stop, for just a moment, and flip the page over to the white back side and think about all the pieces I could be missing and where I am headed. Then, I flip that page right back to its Technicolor form, plant myself front and center, and make my way forward, eyes open wide, refreshed energized, alert to the yellow.

I don’t always remember to do that. I still have many days when I run through life with my head down, blinders on, that old movie reel in my mind playing the same things over and over. And, on those forgetful, black and white days, I’m thankful for the sparks of color that dot my path, such as my brave friends, the angelic trail of pennies, and my newfound positive willingness to step out of the shadow of the staircase, turn my head to the sky, and take in the vast Technicolor of this world.