Down Syndrome: Keeping it Real

What is real about Down syndrome? That’s both a simple and a complex question. What is real is what doesn’t change. But so much does change! So to answer this question I need to dig deep under the layers. To dive deep, like a scuba diver, donning my gear, swimming deeper and deeper, head first, into the ocean. The bright, changing rippling water giving way to the darker, steadier waters below. Where the sand settles and all rises from. That’s where the real I’m talking about is. What doesn’t change and where all ripples and light lift up from.
 
An easy place to start is; what’s real is Wil is a boy. He likes typical boy things, and like most boys, there are some things that he likes that girls do too. He used to love to dress up in his sister’s princess dresses. All glitter and bows. He even had the spin perfected where his skirt would flair out and he’d laugh in delight.
 
Though he loved wearing his sisters dresses, I don’t think it was so much the glitter and glamour that made him shine each time he put one on and give it a spin. It was because those dresses were his sisters’. Wil wanted to be just like them. But as time went on the dresses were replaced with tractors and trucks. And hats. So many hats. The kids is obsessed with hats. We have 2 drawersful and every day he knows exactly which hat he will wear. But what didn’t change as Wil went from princess dresses to tractors and hats, is he wants to be just like his sisters. To be and do all the things that they do.
 
Wil can do many of the things his sisters do, but at a different pace. And in a way, this is the case for us all. We have role models we admire. Some of our role models are siblings, friends, parents, and individuals that have achieved what we aspire to. We model them, learn from them, and are motivated beyond our fears to reach new heights from the examples they have set. In that, Wil is more alike than different. But it still is different in certain ways. Wil has cognitive delays and low muscle tone. Though he can do a lot, he is not able to do all his sisters can do. This is a hard reality for him sometimes.
 
I remember specifically a time he wanted to swim like his sisters do. He put on one of their bathing suits thinking it would magically allow him to swim like his sisters. He ran out to the lake in excitement. But upon reaching the dock, he stopped abruptly, realizing the suit he wore had no special powers. It was simply his sisters swim suit and it was up to him to learn to swim.
 
He has since learned to swim, at his own level. He takes swim lessons and loves them. Though the kids around him have learned skills quicker, that takes away none of his zest. He splashes around, laughs out lout when the teacher assists him in floating on his back. At some point, I know he will be able to swim laps. Right now, he revels in being in the water and learning to swim. What will change over time is his ability to swim, but what is real is the excitement of his achievements. What may look seemingly small advances from the outside looking in, are great moments of joy for Wil (and frankly, for all of us that are witness to his joy!).
 
I believe this one fact is the reason many of us adore individuals with Down syndrome. We see the challenges, the time put in to reach one forward step. But that is exactly what makes each step a joyful celebration. Nothing is too small to celebrate for the heart and soul that goes into it. Where, when and how each step takes place can change, but the joy is unchanging.
 
Every morning, Wil asks me for a hug before he gets out of bed. One day he may grow out of it, but today is not that day so I soak it in. I used to sing to Wil every night until he fell asleep (poor kid, I’m not a good singer but he doesn’t care). Occasionally he will ask me to sing now, but he’s mostly grown out of that phase. He just says, “Bed now Mom.” So we go to his bed, I tuck him in, we talk a little bit, I give him a hug and he drifts off to sleep. As the singing has changed, the morning hugs may over time, too. I pray they do not, time will tell. Though his hugs are about as real as love gets, in keeping with the definition of ‘what is real does not change’, what will always be there is the pure, openness of love he gives whether it be through singing or hugging. Wil does not hold back his love in any expression. If he wants to hug you, he will, no matter who you are. If he wants to dance, he will, no matter where he is. We’ve even had a dance party in the lobby of Katherine’s Crossfit class because he liked the song playing in the gym!
 
Ahhh, and the flip side. The famous Down syndrome brand of stubbornness. From what I hear from my friends who have adult children with Ds, this will not change either! I used to peel Wil off the floor in the middle of the grocery store aisle when he decided it was time to stop shopping. Then, later it was figuring out ways to get Wil out from under the table in Kindergarten when he was done for the day. And now he is in a stage of learning to identify and verbally express his emotions. This has helped greatly with the “plop on the floor cause I’m done with this.” But it has morphed into “No! I don’t want to!” when it’s time for reading in school and he’s tired. So we have had some talks about this, and some days it works, and some days we need to do a little more talking. What’s real though, what won’t change, is when Wil is done, Wil is done. This has been a great teacher in patience for me. I can not make Wil do what he does not want to do. It takes calm talking and reasoning. Basically, it takes time and any force applied just delays that time. I’m a kind person by nature, but this experience has brought about a deeper level of kindness in me. I really have to dig deep to figure out where Wil is coming from and meet him there. That is easier said than done when there are places to be and time is short. With Wil’s sisters, they understand urgency when needed. Wil has his own timeline, and any forcing just slows things down further. He does have a great sense of humor about it though. One morning as we were just headed out the door for school, it was at that moment he decided he wanted a different hat to wear. I said to him, “Ok, run back in your room to get your hat. Quick like a bunny!” Wil responded, “Sloooow like a tortoise!” As he slowly clomped his feet to his room. That’s now become our joke in the morning.
 
So what is Real with Down syndrome? I guess you can dress things up and twirl them around. I suppose you could climb great mountains or take a single forward step. And you can do it all quick as a bunny or slow as a tortoise. And all of those experiences can feel darn amazing and add great meaning to life. Yet still, they are changing and evolving experiences. Those too, shall pass. What stays, what sticks, what lives down deep in us that doesn’t change. What lives forever if you dive deep enough to find it; is the joy derived from these experiences. How you celebrated of every, single step. How we expressed our intrinsic emotions while still finding a place in us to meet people where they are.
 
Wil lives a truly real life though this world tries really hard to change him and to “cure” him. I believe it should be the other way around. Wil knows what is real and he keeps it that way.
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Our Friends in Special Ed Are A Blessing; Make No Joke About It

Last night finishing up an errand, Matt and I grabbed a bite to eat at a restaurant before heading home. There was a family at a table near us. I’d guess the father was in his mid-thirties and his kids were younger teens. I overheard this particular father teasing his daughter in an amiable way. Then he said, “You are special ed!” He was teasing his daughter that she was acting silly.

UGH! What a specifically negative message to send, especially to your child! Oh how I wish Wil was there with us. I would have walked over and said, “Oh, I overheard you were in special ed! So wonderful! This is my son, Wil. He’s in special ed too! This is fantastic. I love how circumstances like these bring people together!”

But Wil was home, and not with us at dinner last evening. So I sat there thinking of how to approach this situation. There really was no good way. I was eavesdropping. And the message I wanted to send would have been lost by me interrupting this family’s dinner. It hurt to hear the message this father sent. In our current times, with inclusion in schools, awareness has taken great forward strides. Clearly, there are many more forward strides to take.

Shortly after I overheard the aforementioned comment, I got up and walked toward the restroom. On my way there, I came upon a large table. There were probably 12 people seated around the table. As I passed by a young woman, perhaps in her 20s, seated at this large table waved energetically to me and gave me a big smile. The woman next to her smiled and said, “She’s waving at everyone today!” The entire table was jovial. I could see this young woman who waved at me had some physical and likely intellectual delays. And she was the highlight of this merry group.

I’m not one to believe in coincidences. And I don’t believe the simultaneous occurence of the father making a “special ed” joke and the young woman’s uplifting smile and wave fall into the coincidence category. I may not know the young woman personally, but I have an idea of what her world is like. I know why that entire table was lifted by her waving and smiling. There is something immensely special about living with people with different abilities. I know that special world from the inside and for that I’m extremely thankful. Sadly, the family next to our table does not. I do pray they drank too much pop and needed to make a trip to the restroom. If they did, there is no doubt they would have received a wave from the young woman at the big, happy table, too. She was too far from their table to eavesdrop like I did, but if she was she would have no grudges against what they said. She would treat them as equals, happy to share a wave with another person just because she can.

Just as it should be. No joke about it.

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Is My Memory Going or Am I Short A Chromosome?

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As my brain gets mature-er, it becomes more and more forgetful. Or maybe I have so much on my mind, something is bound to get lost in the shuffle. I’d rather go with that idea, but truth be told, this aging thing is happening whether I like it or not. And some forgetfulness I’ve heard is part of the package. So like anything, I must learn to adapt to the changes life throws at me. I don’t mind adapting, in fact, I find it kind of fun to learn new ways to do things. I just don’t like the initial learning curve of drawing complete blanks on things, but that is the motivation, isn’t it? If I didn’t recognize a problem, where would the need to solve it be?

Luckily I have a memory aid in this whole process. And he’s much cuter, funnier, and huggier than a paper and pen to jot down reminder notes on (though I have received this really cool notepad from a friend that has the title “Ta-Da!” that has been helpful in this memory-reviving pursuit). This cuter, funnier, huggier memory jogger is my son, Wil. His memory is a steel trap. What’s kind of funny, but also not (life is full of paradox), is from being an avid country music song lover (and admittedly from his dad having a cold one on a Friday night) Wil has learned to love the word “beer.” Whenever he sees a sign over a bar he reads loudly and proudly, “B-E-E-R! Beer!” At school when they asked him to say a word that starts with “B”, well you know that answer to that one. His paraprofessional texted me his answer to the “B” word with a giggle I guess the “B” word could be worse! So with, Wil, he remembers everything from song words to experiences. I have to really watch what I say. In fact, when he was a baby, my dad sang “You Are My Sunshine” to Wil every time he saw Wil. Wil could sing that song word-for-word in its entirety before he could speak 3 individual words in a sentence.

Back when Wil was about 3-years-old, he would leave things in stores when he got tired and frustrated. Not because he forgot them, but I believe it was some form of rebellion he had control over. We’d be about to leave and he’d yell, “Hat!” And I’d ask him where it was, and he’d walk me to it. And these weren’t small stores. In a Meijer, he’d lead me from the door we were about to exit all the way to the toilet paper aisle in the back. There sitting a-top a 36-ct package of Angel Soft toilet paper would be his hat. Like it was waiting for our arrival. Or we’d weave around the big bags of feed at a Tractor Supply Company, and back behind a large stack, he’d point. I’d almost have to climb up over the stack, to follow his pointer, and there I’d see his hat. He must have tossed it in the air and watched it land at just that exact spot.

I’ve heard of the ability to remember from multiple friends who have kids or family members with Down syndrome. One of my friend’s uncles who has Down syndrome is about my age. He remembers names of acquaintances that those of us with 46 chromosomes would have forgotten about 3 seconds after the handshake. I don’t know the science behind this, but my experience up to this point would tell me it is because our kids, friends and family members with Down syndrome truly value what is important. And when something is deep, down important to us, none of us forget it.

In running a household, there are so many distractions. I do my best to focus on what is important, but oh how those distractions distract thee! Wil and I have this interesting lost and found act going on right now. He remembers everything like it was yesterday, because sometimes it was yesterday: I went to pick up Wil after school. Wil hopped in the car and I decided to put his backpack in the trunk. His sisters were soon to arrive at Wil’s school from their school on the transfer bus. The girls had a friend of theirs coming home with us. Putting Wil’s backpack in the trunk would afford us more room. All went well, loads of giggles in the backseat with three 13-year-old girls. We all unloaded into the house, the girls went to the basement with snacks to play games. I made Wil a snack and he hung out upstairs with me while I made dinner. Soon after, we all headed out, as I took Elizabeth to the track meet, their friend home, and Katherine to CrossFit. This morning, getting everyone ready for school, I was looking all around for Wil’s backpack. I muttered to myself, “Where did I put Wil’s backpack?” I usually unload it then put it back in his room. Wasn’t there. Then, I heard Wil’s voice from the kitchen reply to my mutter, “It’s in the trunk, Mom!” The trunk? And how did he hear me? (Mental reminder: Be very careful what you mutter). Then, ohhhhh yeah….and the memories come flooding back from the years ago that was yesterday after school. (Another mental note: Write down first mental note in “Ta-Da” notebook immediately as you are unlikely to remember first mental note).

Whether it be the missing backpack from yesterday or the missing hat from 9 years ago, Wil remembers both like yesterday. So, with that, my memory issue could be:
A) I am short one chromosome to have a good memory.
B) It really is an age thing.
C) I let the distractions distract me.

I can’t do anything about the chromosomes or the aging, but I can do something about the distractions. This world is really good at throwing distractions at us. This world is not made for us to keep a singular focus on what’s important. It’s so, so easy to get caught up in the noise. But here’s another piece of wisdom Wil shares with me along with his fool-proof memory: when it gets all too loud for him, he puts on his noise-cancelling headphones. Then he can regain his focus and all is right in the world again. Smart kid.

Wil may have cognitive delays, but when it comes down to what’s important, he’s a downright genius! So if you see me wearing a hat, singing my heart out to country music, with ear-cancelling headphones on, don’t think for a second that girl is lost. In fact, I will never be feeling more found in my life! Ta-Da!!!

Gratitude Is A Heart Thing

Gratitude. A word that is being thrown around a lot these days. Gratitude is grand. Even if it is over something seemingly small. Allow gratitude over one small act or experience to grow and expand, and you will find little else compares to the immense joy Gratitude fills a heart with.

Yet, when words are overused, the feeling associated with the word gets lost in the shuffle. The expansion shrinks and the word gets looked over and we are already on to the next.

Gratitude is a heart thing. Gratitude is also immensely personal. When we feel the warmth of the sun after a long, cold winter. That one moment can add a new perspective to our day. Sometimes we don’t even mentally acknowledge this feeling. It’s a heart thing. Our emotions are lifted and we simply call it a “good day.”

There are also the times we stop and allow gratitude to take over. Lifting our heads to the sky, opening our arms, and taking it all in. Yes, Gratitude is a heart thing.

I think I’ve watched the movie “Sing” over 500 times with Wil. Yet, each time he says, “Mom, watch Sing with me?” I say yes. Because I know what’s coming. It’s not at all about the movie, it’s about the entertainment that comes along with the movie. At this point, Wil knows every line of the dialogue and the songs. When one of his favorite lines arrives, he leaps up enthusiastically, throws his arms in the air, and theatrically presents his words in tandem with the characters. He looks over at me with a laugh in his eyes. Then he sits back down until his next favorite part. When a song comes on, he’ll again bounce back up and dance around the room, singing each word. I never grow tired of it over the 500+ times. His enthusiasm is contagious. Now, I could never watch “Sing’ by myself. It would fall completely flat without Wil’s energetic additions.

The same holds true if any Luke Bryan song comes on the radio while I’m driving. All of his songs fall flat without Wil’s back-up vocals. Wil adores Luke Bryan and knows every word of almost every song. He plays Luke’s music over and over and over again. Like we all do, if Wil doesn’t hear a word correctly, he makes up his own. I’m so used to Wil’s made up words, that if I’m in the car by myself and a Luke Bryan song comes on, I’m like, “Luke, you are singing the wrong words!”

Gratitude is an experience more than it is a word. Gratitude is unique to our experience but sharable by all of us.

Gratitude is a heart thing

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Let’s Stand for the Special Olympics

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Unification. That is a beautiful, strong word. Where does it exist in it’s entirety? The Special Olympics.

And now, a proposal to impose on families the duty of even more fundraising efforts than we already do to keep this program thriving. And what of the families that are already taxed to the max? Everyone misses out. You see, Special Olympics is not just for our kids with special needs. It unifies, strengthens and empowers all involved. Special Olympics reminds us that we are truly special for who we already are. It doesn’t matter what color you are, how many choromosomes you have, if you speak or you sign or both. It doesn’t matter because deep down we all matter greatly. True leadership is standing for what matters for the greater good. Let’s all stand for the greater good. Let’s stand for the Special Olympics.

 

Yesterday was amazing!

Yesterday was amazing!! THANK YOU to all who supported 3.21 in your own way by donating, running, walking, swimming, biking, rowing, planking and so much more!!! One recurring message I heard in the many stories that were shared yesterday is how our loved ones with Ds show an unbiased kindness and love toward all. The beautiful part is we do not need 47 chromosomes to extend that same open kindness to others and ourselves. Thanks to our loved ones with Ds for showing us the way every single day!! 💙💛💙💛💙💛

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