Do you know what I think about Down syndrome?
Down syndrome is dancing to a tune that you may not hear but feel deep down in your soul. Down syndrome is remembering how deep belly laughs are some of this earth’s best medicine. Down syndrome reminds us that being in a hurry is overrated and there is always time for a hug. Down syndrome should have it’s own termed category in stubbornness. Down syndrome is a reminder that some of life’s challenges are also life’s greatest blessings. Down syndrome reminds us that we may not forget, but we have the capacity to forgive. Down syndrome unites strangers turning them into fast friends. Down syndrome is challenging, beautiful, joyful, present, giving and free.

There is this interesting dichotomy in raising kids with special needs. You want so much for your child. You find resources or you work to create them. You reach out to support groups and find friends that understand this new life you have been given. You do all you can to ensure the most opportunities for your child. As your child gets older, you can see easily some milestones ahead they will reach, others are still fuzzy, and some you can see are highly unlikely. The interesting dichotomy is coming to terms with this. You fight so hard to garner acceptance and yet, when you see certain milestones will not be attainable, you find yourself ok with that too.

It’s not a complacency thing. It’s not a resignation thing. It’s a full acceptance thing. It’s a getting to know your child thing. Of course, we can not predict the future for any of our children, but so many more questions surround our children with special needs. There are so many questions in the beginning. Will my child walk and if he does, when will he? Will my child talk and if he does when will he? And if he doesn’t what avenues will we take? Will his health issues affect his daily life? Will he be in a mainstream school? Will the school administration work with his needs or will it be an uphill battle every day? Will he need resource room time? If so, how much? Every day is a new learning experience mainly by trial and error. But then things happen like your child says one word. One whole word. One word you worked on with the speech therapist and didn’t know when or if it would come. And then it does. Of course, you hope this means two words are coming. So you work with the speech therapists on how to encourage two words together. Sometimes what worked to encourage that one word to be spoken doesn’t work to encourage two words together. So you change your process and your patience must be increased whether you want it to or not. You used to be a “planner” by nature. Now you have learned to live “day-by-day.” What looks good on paper does not always replay as perfectly in real life living. You learn to adjust, modify, and rearrange. Processes reveal their outcomes in their own time. But eventually those two words do come, and it is like the clouds parted and angels started singing. Happy tears sting your eyes, you hug your child and your child is looking at you like, “Hey, didn’t I just put a lot of effort into saying ‘Want Goldfish’? Can we get on that please, I’m hungry!”

Now, Wil talks in big, full sentences. Some are abbreviated, but most of his sentences start with a capital letter, have the correct noun, conjunction and verb, and end with a period. He’s been talking to me in big sentences for awhile now, so you would think the angel chorus would have stopped by now but I still thrill at the sound of it. I believe it’s because of the process it took to get here, and starting at a point where I couldn’t be promised if he would talk.

It’s the same when Wil rides his recumbent bike with ease, reads pages in a book, or writes a short paragraph. We went through oodles of bikes to find the right one for Wil. Training wheels, smaller bikes, a tricycle, and finally we struck gold with a recumbent bike. I can hear the angels sing just above the squeals of his tires every time he peels around a corner in our driveway with the look of thrill in his eyes. Reading and writing have been tireless acts of patience on some days, and full of ease on others. When Wil wants to do something, he is the easiest kid in the world. But try to force anything, and you better call it a day right then and there. A friend’s husband who is a psychologist who works with kids with Down syndrome said, “There is stubborn and then there is Down syndrome stubborn. I was told that when I was studying my degree and thought, how could there be much of a difference? Then I got my first job and realized what they meant.” We both had a good laugh over that. All of Wil’s achievements were the end result of a process lived through day-by-day. Trial and error. Learning new ways, tweaking the old, and sometimes it was good, old luck. A celebration of one extra word, one hot rod turn in the driveway, one favorite book read, one dedicated paragraph about his favorite toy truck are so extraordinary in their own right for the journey to achieve them.

Yesterday, Wil needed to sign a form for school. He’s been writing his first and last name for awhile now, so when I asked him to sign the form he asked me, “First and last name, Mom?”
“Yes, right here on this line.” I handed him a pen.
“Wil Taylor,” he said as he wrote out the letters. Then he looked up at me with a big, proud smile. Those poor angels must be really tired of me by now

They say it’s not the destination but the journey. I believe that to be true. I also believe that is why this special needs journey feels in a way like a dichotomy. You have to really reach out so many times to clear the way for your child. To pave a path so no one stands in their way with pre-conceived notions to impede their process. This is very important. But yet, once you start making your way, it’s the little stops along the way that are so spectacular and miraculous. Even though there are certain things Wil may never do because of his extra chromosome, I want to make it very clear that acceptance of this is not a complacency thing. It’s not a resignation thing. What the entirety of this experience is –challenges, stops, starts, joys, thrills and all– is nothing less than a gift from heaven. I know that to be true because every day, even multiple times a day, those angels never fail to appear to sing Wil’s praises right along with me.

Wil was sitting on the ground, unwilling.

“What does he have?” She asked.

“What do you mean?” I responded but I already knew.

“What does he have? What is wrong?” She prodded.

“He heard a loud noise so he’s scared. He just needs some time. He’ll be fine.” I knew that was not what she was after.

“Oh.” Slight pause. “Well what does he have?” She asked again.

“Do you mean does he have Down syndrome?”

It seems most anyone I meet knows someone with Down syndrome. Almost instantly they launch into a story about their daughter, son, niece, nephew, aunt, uncle or friend and how they have enriched their lives. Then we invariably laugh about the seemingly innate stubbornness our friends with Down syndrome share and find ourselves carrying on with big smiles on our faces with all kinds of stories. Nine times out of ten strangers become friends with our Down syndrome bond. But this was already shaping up to be a very different kind of conversation. My inner red flag was waving it’s head off.

“Oh, do you know there are supplements for that?” Ahhh, that’s what this is about.

I’ve been approached with supplements before, that will “cure” Wil’s Down syndrome. In fact, some of his facial features with Down syndrome will even start to “normalize” after taking such supplements, is the claim. That one really gets my blood boiling. My son is beautiful, there is nothing “abnormal” that needs to be “normalized”, and there is nothing that needs to be cured, either, thank you very little.

“Do you mean to cure him?” How dare she. She doesn’t even know my son, not to mention the fact that my son was sitting scared on the ground and I was trying to calm him and coax him up. But her agenda was not about helping him, it was about curing him. She launched into how to cure my child of his “disease.” If she really wanted to help, she could have lent a hand for goodness sakes.

“There is nothing to cure.” I said. “Down syndrome is a genetic difference. He has three copies of his 21st chromosome. He’s very healthy.”

“Oh, but you should watch this video. World renowned doctors. They cure people who are in wheelchairs that can not even lift their heads. After they take the supplements they are able to move their heads.”

“Wil moves his head just fine. Really.” Did she even hear anything I said?

“But these are expert doctors. You must watch the videos.”

Wil has a genetic condition, not a disease. Let’s get that difference very clear. If I had a piece of chalk and a black board in front of me at the time I would have had her write 1000 times “Down syndrome is not a disease.” And if she didn’t get it after that, write it 1000 more times.

I am not on the same path as this woman, I don’t know her history or where she was coming from. I know I have made many blunders myself in the things I say and do simply because I do not know better at the time. But there is a difference between ignorance and not knowing. Ignorance does not want to know. Not knowing is simply a lack of exposure.  She clearly was meeting the former definition. The sad part is, our society has become so politically correct, there are people that truly care and make blunders simply because they don’t have exposure to kids with special needs. When Wil was a baby, friends confessed to me that they really wanted to ask questions but were too scared to because they might say the “wrong” thing.  Whenever I meet people, I remind myself that I was once new at this whole special needs thing. There was so much vocabulary I did not know and I’m sure I said lots of things that grated the nerves without even realizing it. A few years ago, a new friend of mine let the word “retard” (pains me even to type it) slip and immediately caught herself. She apologized over and again. When she said it, I clearly saw on her face how bad it tasted once it left her lips. A word she likely once through around without a second thought before she met me. I never once had a discussion about that word with her previous to this. But when she it came out, I could see she now understood the pain that word brings. I wasn’t mad, I was glad she said it in front of me. I was glad that she now knew for herself, now with exposure to a child with special needs, how wrong that word really is. She didn’t know before, and now she did. There will always be situations where we just don’t know until we have a personal experience and can learn for ourselves.

I’m not sure the conversation with the woman I had today got through. When I left her, I felt like I was in my space and she was in hers. Our two worlds never connected. She clearly knew very little if anything about Down syndrome and was not interested in learning more, even though she was trying to “help” me by curing my son.  When I have these types of encounters it’s almost like a shock. How in this day and age can Down syndrome actually be considered a disease? It just blows my mind. Let’s take yourself for a second. You are generally healthy but you may want to improve some things about yourself; eat healthier, learn a new language, increase you muscle tone, take guitar lessons, help to relieve world hunger. You don’t need a cure to improve yourself. You just need motivation and people to help you along the way.  Now, if you developed Lyme disease, then you’d be looking for cures. Life improvements and disease are two very different things. Wil does have extra challenges because of his genetic differences, such as cognitive delays and low muscle tone, but they are not diseases. We work on ways to improve his muscle tone like horseback riding, staying active, eating healthy. We work on his cognitive delays with added reading, dot math, and spelling. There are health ailments that are associated with Down syndrome such as a higher incident of heart issues, leukemia and Alzheimers. Of course, we need to focus strongly on cures for those health ailments. But let’s be very clear these are health ailments associated with Down syndrome. They are NOT Down syndrome.

While there will always be people like those I encountered today, that are like talking to a brick wall, there will always be people that truly care. It’s an incredibly special part of life when I go somewhere with my Buddy Walk shirt on and a complete stranger will approach me and share a story about a loved one with Down syndrome. And there will always be people that simply say the “wrong” words because they just didn’t have exposure to this experience but are open and wanting to learn more. I was angry with this woman I encountered today and she did say so many “wrong” things. But I won’t let that stop me from giving people a chance to say the “wrong” things that truly care. The best education is not a lecture (though I would surely have delighted in seeing this woman write Down syndrome is not a disease 1000 times) but to realize, with time and exposure with Wil, and other friends and family with Ds, that this is in no way shape or form a disease. Down syndrome is a genetic difference. Our friends with Down syndrome add much value to our lives being exactly who they are, just as you and I add to life by being exactly who we are. If you don’t believe me, go ask someone in a Buddy Walk shirt. They will be more than happy to share their stories and I promise you two won’t be strangers for long. Why the heck would you want to “normalize” or “cure” something as uniquely beautiful and special as that?

When I was in high school I did not like science. I had zero interest. The flip side of that was I wanted good grades. So I had to care enough to get a good grade and move on. My dad, trained as a chemical engineer, loves science. Specifically, the periodic table of elements. He’s a smart man all around, and I was lucky to have him help me with my homework. He would read the chapter of my book we were working on to refresh his memory, then the light bulb would go on, “Oh this!! This is so great! See, Christie, this is how it works…” And he would expertly and enthusiastically explain how it all worked with much more detail than I was interested in. I’d get the entire background as to how it all came together. In his mind, nothing was better! Though I knew how fortunate I was to have my amazing dad, I was like, all I wanted to know was how to answer number 4!

Even so, I thoroughly admired his enthusiasm and excitement and that part was contagious. Though I never shared his full enthusiasm for the periodic table, it inspired me enough to get a surface level understanding of the subject that I would have likely never conjured on my own. However, the deep underlying workings of this science never stuck. It was like there was this wall inside of me, and I really needed a deep care about science to break it down. Whatever it did to light a fire in my dad, was not compatible for me.

Many years later, I’m still that way with science. I get excited about the things I need to know, such as my interest in science in terms of running a marathon because I care enough not to hit the proverbial wall. I’ve hit them before and they are not fun. That is motivation in itself. I do love to know how the body works, and that has helped me a lot as a coach. However, what is most important to me, that fills me with the excitement and enthusiasm my dad shared, is the power of the mind.

I’m thinking of getting Wil into CrossFit. It would be a beneficial workout for his low muscle tone. I was talking to a local CrossFit gym owner who is a very dedicated and knowledgeable man. I really enjoyed talking to him as we clearly both share a passion for fitness. He was telling me how runners are the hardest population to train in CrossFit. Runners love to run. CrossFit breaks things down and that is very challenging mentally for runner. He said he used to be a runner, and though running is satisfying, you really need more.

Scientifically, you do. I do not disagree. We runners need cross-training to stay muscularly balanced to avoid injury. But what I love most about running is what rises above science. It’s how you feel. And you need that big, open space in front of you to do it. Surely, you can try to break down the feeling runners get to endorphins, and all of that. But only partially. I would challenge any scientist to take even one person, measure what they have going on in life, how they individually process those personal events, then after going for a run, how the trajectory of their thoughts change after said run and how exactly they now will behave different because of said run. While some predications may be made, an experience like that could never be accurately measured even with large margin of error. I love that piece of mystery in our lives that is all controlled by our minds.

When I talk about this piece of running to non-runners, I see the same look in their eyes I must have given my dad. They see my enthusiasm, they even absorb it, but inside there is this wall inside that just doesn’t really care enough to break it down. They hear what I’m saying, but it’s just not getting through. That’s ok, just like myself and my dad, we have some interests that just don’t mesh. What’s important is, having something powerful enough in our lives that rises above science. To share our enthusiasms about things so we can at least have an understanding between one another.

Right now, on few recent occasions, I have felt this wall between me and explaining some of Wil’s limitations. We all have our limitations, though some of his limitations are different from what the general public experiences. He has a high sensitivity to noise. Any loud place, like the movie theater, a stadium, an auditorium, a sporting event and anywhere animals are, he needs to have his ear protectors on. It’s very unsettling to him. This sensitivity requires forethought to where we are going and what we might encounter. There are extra steps required, extra patience, extra explaining that must be done to people who do not understand because this is not their norm. Like my dad did for me, I share my knowledge that I didn’t have before, my exuberance, and explain why this is hard for him. But there are times I see that same look in their eyes…the wall is there. Like my dad did with me and science, I’m not looking for a full convert, just a surface understanding. Which I don’t feel is too much to ask. So, when I encounter this wall it is incredibly frustrating to see a blankness and unwillingness to understand and have compassion for his current limits. Because deep inside all of us we have these walls, and they are never broken down unless we make ourselves care enough to make a change.

I can’t make other people change and see things the way I do just like my dad couldn’t make me love the periodic table and the CrossFitter will never convert me from running. Likewise my enthusiasm about running may not to turn the non-runner into a runner. I do firmly believe, however, that we learn from and absorb one another’s shared enthusiasms and passions. That above the specific quantifiable mechanics of the periodic table, above the long, beautiful streets to run, above the heavy barbells, and the loud noises my son is sensitive to, there is something we can all share. Our enthusiasm and passion for what we love is contagious and can be powerful enough to open us up to a certain level of understanding if we allow it to. Though this may not be enough to break a wall inside, it does allow us to meet in a place where we can work together. To get through to make the grade, to be compassionate, to try to understand where the other person is coming from.

Even though I still don’t give much thought to the periodic table, when I look back I still smile from the memory of my dad’s enthusiasm surrounding it. Though my memory of how all those elements fit together has long disappeared, the feeling of that time still remains. I didn’t have to understand it like he did to benefit from what he taught me. He taught me to love something, and love it a lot. And share that love even if the person receiving it doesn’t fully understand at the time. It’s not really about the elements, but a love that we hold inside that can be shared. That is something that can never be measured, quantified or encapsulated.

Magic lives in our minds and how we think about events and how we open or close our minds to them. How we change our thoughts and break down our own walls or simply by taking on a new surface level understanding. Magic grows and expands on how we feed and share our passions and enthusiasms. Passions and enthusiasms have the ability to continuously expand, change, and evolve depending on how they are felt, shared and willingly received in an unquantifiable way. Oh how I love the unpredictable, unmeasurable magic of that.

Back when Wil was younger, I’d look at kids that would take off running across the playground. Wil would take off running with them as fast as he could, but he would instantly fall far behind. That’s a tough thing for a mom to see knowing that not only will he not catch up, but likely fall further behind. I’d see the kids laughing and talking back and forth, and Wil would be laughing, too, because they were, but clearly he had no idea what they were saying. I would wonder, what is it going to be like as he gets older? How will he communicate? Will people stop to listen? Everyone has something to say, no matter how long it takes us to say it. How will he find common ground in a world that moves so fast?

And, then, as if in answer, there were always those friends that would stop and turn around to see where Wil was. They would run back toward him, grab his hands and say, “Come on, Wil!” And I would watch with tears in my eyes, immensely thankful for the different gifts Wil and his friends give to each other.

Every school year we start anew. My eyes are keen for the kids that stop in their fast play. The kids that slow down and talk to Wil. The kids that look him right in the eye and ask him a question and wait for as long as it takes for him to answer. Kids that sit with him at the lunch table while the others have gone off to the playground. And when Wil is on the playground, the kids that stop their fast-moving game and include Wil at a level that he can play. The kids that Wil gives a high-five when we meet in town. The kids that Wil runs up to and hugs. The kids that immediately see Wil and come running over. Without fail, all of these interactions are met with a hug, a smile, and many times laughing and silliness ensues. Ask any one of them, and they’d all say it’s worth the wait.

Potty-training for Wil took 2.5 loooong years. Wil was in the middle of Kindergarten when he finally decided that the potty was a good choice. But, with Wil, you can’t force time. You can help him along, give him the tools, but he is the one who ultimately decides when he will use those tools and how he will use them. Back when I began the process of potty-training with Wil, and mind you I went to a seminar our Ds support group put on about potty-training kids with disabilities, bought the book, read and followed the book, and had many talks during this process with fellow moms in our Ds support group (we laughed how we never had so much potty talk in our lives before having kids with Ds!), he remained happy to take care of business just about anywhere, anytime. During all of this, my parents were going to watch Wil for the weekend while Matt and I went up north with the twins. My mom was joking with a friend about my adventures in potty-training. This friend told my parents that I was likely too busy to potty-train Wil with his twin sisters being so close in age to him and that was what was taking so long (grrrr!). My mom shared this with me and said that she would try to potty-train Wil over the weekend for me. After I stopped silently chuckling to myself, I thought, you know, what the heck! Give it a go (pun intended). While I didn’t like this friend’s assumptions, I wouldn’t put it past my mom to work miracles. Like when I told my mom the kids will definitely not eat broccoli, by the end of the day my mom had Elizabeth at least tolerating broccoli while Katherine and Wil were now proclaiming broccoli their favorite food. So I said, “Great! Have at it!”

A few hours into the start of their potty-training weekend my mom phoned me, laughing and proclaimed, “I call Uncle!”

Some things take time. They just do. Not everyone is going to understand that process, and sometimes we may not even understand the process ourselves. We all have our own paths to walk at our own paces. But, at least by stopping every once in awhile, we can get to know each other a little better. Taking a moment to find common ground, create a little understanding, share a smile, toss up a high-five, form a bond, and maybe even a lasting friendship. In the end, when we look back, we’ll see those are the parts of life that were always worth the wait.