October is Down Syndrome Awareness Month:
In seeking inclusion for our kids, the focus is quite frequently on limits. Whether it be overcoming pre-conceived notions, or adaptation in the education system, we live in a day-to-day focused world where our individual strengths and weaknesses are highlighted. While this is important, there is another level to inclusion. A level above limits. In fact, in this place no limits exist. It is a place of giving of ourselves. Giving of ourselves with no strings attached. Giving because we love. Giving because we care. When we give freely of our own choice, the level of our giving is infinite. This type of giving raises us and those around us to a higher plane. A level above limits, pre-conceived notions, and individuality. A place we are all one. When I am witness to this, it is truly a spiritual experience. My guess is you have felt this in your own life too. There is no need to adapt, question, overcome, because in this plane we are all completely free as we are. There is no need for inclusion because we truly already are all one.
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?
This past spring, I wrote about an incident with Wil at the park. He would not leave and despite many tactics, he remained unmoving, so Katherine and I physically lifted him to the car. It was a very emotionally trying experience for all of us. That time stuck with me and I thought in my mind over and again how I could have done it differently if it were to happen again. Well yesterday it did.
The kids and I took a trip to Barnes & Noble. It’s one of our favorite places to browse. It has something for all of us. We wandered in and found our favorite places. The twins browsed teen books while Wil and I went over to the neighboring stacks to look at the multitude of games:
“Look, Mom! A shark game!”
“Oh, Squigz! I have Squigz!”
“Mom, see this!”
In-between looking at games Wil and I would wander over and see what books the twins were looking at. Katherine is into adventure so we read some book covers together to see what might be the most exciting read. Elizabeth is into drama, so we ventured over to that stack to see what held the most appeal. While Elizabeth and I were discussing some options, Wil started to badger Katherine. I knew we were getting close to the end of his patience level. I suggested Wil and I walk over to the young kid’s area where the Thomas the Train tracks are set up. The girls were close to making their selection so I asked them to find us at the train when they were ready.
Soon, Katherine and Elizabeth found Wil and I at the train, and with books in hand, we all made our way down to the first floor. Katherine and Elizabeth took the escalator down while Wil and I took the elevator (though Wil loves escalators, he won’t get on the Barnes & Noble escalator. It is out in the open and not enclosed by walls, so that may be the reason. Regardless, who doesn’t love getting to press the elevator button yourself and not having to share with your siblings). As Wil and I exited the elevator, we passed the music section. It is somewhat enclosed with one entrance and exit. I waved the twins over to indicate where we were going. Wil ran in the music area and started to look at all the DVDs. It was DVD heaven a mile high.
We all browsed the DVDs for awhile but soon Katherine and Elizabeth said they were ready to go to lunch. I had promised lunch at Panera bread.
“Ok, Wil, let’s go.” Katherine said.
“Wil, come on, don’t you want Mac n Cheese at Panera? You love their Mac n Cheese.”
A few moments of consideration.
“No.” Then he sat down. Uh-oh.
“Hey, buddy,” I said, “come on, it’s lunchtime. We can sit outside, it will be fun.”
“Ok, 3 more minutes then it’s time to go.”
“Ok!” And he stood up again.
We browsed a few more minutes and I said it was now time to go. He responded by sitting back on the ground. We tried to coax him up but it was a no-go. Elizabeth offered a piggy-back ride which he usually accepts, but not today.
Like all of us, Wil needs to feel in control of his environment. At the park, we had a time crunch situation. We did not have that here, so I said, “Katherine and Elizabeth, I know we are all ready for lunch, but let’s give him some time like we did at Hidden Lake Gardens. We all like to feel in control of our environment. When he feels in control of his space, I’m sure he’ll be ready to go.” (Last summer, Wil was tired on a nature walk at Hidden Lake Gardens and decided he was done walking in the middle of a trail. When Katherine, Elizabeth and I could not coax him up, we gave him some space. We walked ahead, just far enough so he could not see us, but we could see him through the trees. After a few moments, he got up and willingly walked the trail, staying a few feet behind us, then eventually met with us on his own terms and we all ran down the hill together at the end of the trail.)
I had a coupon for the coffee shop, so I gave the coupon and some money to Katherine and Elizabeth.
“Why don’t you girls go to the coffee shop and buy a latte or iced tea, and I’ll give Wil some time and meet you at the coffee shop.”
“But aren’t we going to Panera?” Elizabeth asked, worried that we were now going to miss out on lunch.
“Yes, honey, we are. I just want to give him some time so he feels back in control of his space. You know how that feels. Just get a drink now, and we’ll have lunch at Panera in a few minutes.”
“Do you want me to get you a coffee Mom?” Elizabeth asked. I love that girl!!
“Thanks, honey, I’ll get one at Panera, you go ahead and get what you want and I’ll meet you in a minute.”
I watched Katherine and Elizabeth walk off together, chatting about what they were going to get. They sure are growing up. I’m very proud of all they take in stride.
Wil was still sitting on the ground. I said to him, “Wil, I’m going to the coffee shop to meet your sisters. When you are ready, you can find us there. See you in a little bit, Buddy.”
Thankful there was only one entrance and exit to the music area in this situation, I walked out of the enclosed music area and stood just behind a book stack waiting for Wil to exit. In only a few minutes, Wil walked through the music area into the main bookstore and looked for the coffee shop. I didn’t want him to see me right away because I knew he needed this independent time to feel in control of his situation or he’d be right back on the floor unmoving. I followed him to the coffee area and there he exclaimed, “Sisters!” and walked over to his sisters and gave them a hug.
“Great job, Wil! Are you ready to go to lunch now?”
“Uh-huh!” He was so proud of himself for making this trek on his own.
Hooray, success!! As Wil gets older he wants more and more independence and he deserves more independence. It’s important for his confidence and his development into becoming a young man. But there are certain dangers that he does not comprehend and I need to be there at an arms-length distance. I’m thankful in this situation I was able to do both.
Back at the park, I knew I could have done better, I just didn’t know at the time what that better was. I pondered that incident and realized what I didn’t give Wil was time and space. In fact, that’s what we all need; time and space. It’s just in different doses. Since I was in a time crunch at the park, carpooling kids and needing to pick Elizabeth up at a certain time, I placed that time crunch on Wil. We tend to focus on very few options when there is stress involved. Yet, there are always more options than we allow ourselves to see at the time. Having the benefit of hindsight, I promised myself if a similar situation were to happen again, I would take a deep breath and think of more options.
There is this quote that I love by Maya Angelou: “Do the best you can until you know better. Then when you know better, do better.”
Yesterday I was thankful for the opportunity to do better. To find options that gave Wil the time and space he needed while also giving Katherine and Elizabeth the time and space they needed. Seeing my three kids hugging in the coffee shop, I knew that day, I did better. That is a wonderful feeling, indeed!
Yesterday, driving home from the grocery store Wil and I drove over railroad tracks. He yelled out, “Railroad tracks! Mom, I be the conductor.”
With the excitement in his voice, you’d think it was the first time he saw railroad tracks. In fact, we go over those very same railroad tracks frequently on various errands. Yet, each time he calls these tracks out like he’s seen them for the first time. How very refreshing it is to be in his presence!
Wil makes the simplest moments so very fun. I’m reminded constantly how blessed I am, no matter what is happening in my life, right here and right now. That as complicated as things are, happiness is always here. It’s not in things, it’s in us. Yet, ironically, the more we chase or run away from certain experiences in our lives to find a certain happiness, we lose our perspective of what it was we were going after in the first place. In these very simple, every day moments, like the car bumping over railroad tracks, Wil has an uncanny way of reminding me that happiness is not elusive. He pulls my mind immediately to the present moment. All the outside thoughts get pushed to the side. It’s just him and me and we are in this very moment. Life is always right here, right now. It’s not behind or in front of us. And these very moments build in me a stronger enthusiasm to tackle the future hurdles and let go of the past pains that no longer serve me. I believe the way Wil never forgets to be present in a moment is why Wil is so magnetic to those around him. We want what he has. We want his simple, yet powerful joys. He is a reminder of the blessings we live every day, the blessings we all know inside of us, but just sometimes forget in our forward or past looking pursuits.
The next time we are at a crossroads, let’s imagine ourselves bumping over a set of railroad tracks to snap our minds out of their future or past thoughts, and bring us right to the present moment. May we stop for a moment and take note of the simple yet powerful blessings we do have around us at this very moment. Let that joy build in us strength to overcome the obstacles ahead and to let go of the past thoughts that no longer serve us. After all, we “be the conductor” of our thoughts, and that may be one of our greatest blessings of all!
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.