Individuals with disabilities are not more or less special — they are not put on this planet to teach us. All of us are born of the same place; all of us are born of our own ways. All of us are here just as we all are—meant to live and breathe and express our greatness the best we know how, in any way we know how.
But we do not see individuals with disabilities born of the same place we are. To make sense of it all we paint pretty pictures of angelic qualities, or dismissive pictures of lacking abilities, or tuck away the pictures in our minds, recoiling in fear and resistance to understanding.
Wil has undoubtably changed my life. But not because he’s special, or angelic, or here to teach me, or less than. He changed my life when I stopped painting pictures to make my mind more comfortable about his disability. He changed my life when I saw his greatness the same as mine, in his own individual way. That he was born of the same place as we all are, expressing his greatness in the best way he knows how, in any way he knows how.
When we see all of ourselves as born perfectly, in our own ways, then this thing called “acceptance” will no longer hold weight, because acceptance will simply—and beautifully complicatedly—be.
“It’s hard raising a child with disabilities.” If I had a quarter for every time I heard or read that statement. Bear with me while I flip the coin for a moment. No story is ever one-sided.
When I watched Wil walk off to his cabin for his first overnight camp, without even a glance back at me, my chest literally felt like it would burst open. Every part of my being begged to melt into an all-out uninhibited sob and fully feel all the emotions flow through and over me.
It felt like I had a million birds fluttering in my chest, crying to burst out. Each bird a story built upon another story that brought Wil and me to this very spot; stories of backward steps that said we’d never make it, stories of forward steps giving hope that we just might. Stories of angels on earth that took my hand and walked me through hardships; stories of those that withdrew emotional support and left me to walk on my own. Stories of my own inner growth; my own inner strength, my own education and devotion to this life. All of these stories now bound together begging to fly high together and exclaim in one unanimously strong and beautiful Hallelujah!
But I couldn’t let the birds free. I couldn’t give way to my sobs. I’d embarrass Wil. So I allowed tears to stream quietly down my cheeks. And that’s how almost every success Wil’s had has been. We work for it and work for it, and when it appears he’s like, “Yeah, what’s the big deal? We’re here now. Moving on.” We are like ducks paddling in the water—I know the destination, but I’m working under water. Coaching him how to paddle his legs. Sometimes he listens, sometimes we speed ahead, and sometimes we go backwards, sideways or float for a while. Sometimes I have to change course; sometimes I need to be patient with the course we are on. But we always arrive somewhere, and when we hit land, I surface and take a big breath in of the fresh air. The joy of the destination we worked for overtakes me. Wil looks around proud himself but with an inner knowing, like yeah, I knew we’d get here. You do know by now this is on my time and not yours. So here we are, right on time. Get control of yourself, lady!”
To Wil, I’m just his mom. I support him, I annoy him, I push him, and I spoil him. He’s moving forward in the way he intends to do. To him, this camp was right on time. To me, I knew what it took behind the scenes to get here.
We parents raising our kids are often called saints. That often puts me off because it puts us on a pedestal, rather than walking the earth right beside them.
I’m no saint, I’m just a mom that does what she does because she loves her child. But I have touched heaven being Wil’s mom; many times. Most recently I was standing on a little patch of grass at a summer camp, watching my son walk independently away. So maybe the saint-callers do have a point, because I would never have known that level of joy if I didn’t know the depth of the flip side.
To the moms who supported me in those early years and beyond…
Instead of sighing, we laughed. Instead of crying, we laughed. Instead of our differences, we laughed. Laughter did not make light of. Laughter did not negate the challenge of. Instead, laughter is depth of connection. Instead, laughter is inner understanding. Instead, laughter is unity. Instead, laughter is fortitude to navigate the challenge of. Instead, laughter is kinship.
The past fall, I struggled with the thought of never truly being an empty nester. My thoughts were a twisted, tangled jumble of yarn – strands of prickly burlap wound tight around strands of brilliant, transparent glitter.
The brilliant strands of glitter represent Wil’s near constant song. Nearly every event calls for a song — when he’s playing, in the shower, in the car, or outside for a walk; anything and everything is inspiration for music. The brilliant strands of glitter also represent Wil’s ever-creative and impromptu silliness. Just yesterday Wil grabbed a branch, held it up and said, “Look Mom! I’m Tree Wil.” And we both broke up into giggles. I can count thousands of such impromptu acts over the years. There is nothing too small for Wil to make big of. He could make a brown paper bag fun—and has, many times! The brilliant strands of glitter also represent Wil’s ever-expanding growth, independence and self-advocacy. Each year he reveals to us more and more of what his true abilities are.
And yet, even at Wil’s highest levels of self-advocacy and independence, he will always be vulnerable. He will always need some level of care beyond his own. When thoughts of Wil’s vulnerability overwhelm me, the prickly strands of burlap sprout and wrap themselves tightly around the brilliant glittery strands, shrouding their luminescence and razzle-dazzle, weighing them down like a heavy, clingy, weedy vine.
It is the burlap strands I’m stuck in when I envy my empty-nesting friends their freedoms. Don’t get me wrong, I am happy for them – I thrill at listening to their planned or dreamed of future adventures. It is the sense of freedom that lay before them that I envy. I envy that for them this is the natural order of things – that this type of freedom is expected.
For our family, a lot more is to be considered — Wil’s care must always be considered. He can’t be left alone for extended periods so we are always aligning schedules. Vacations must be made that suit his needs. If a situation is loud and very crowded, Wil may refuse to go in. If Matt and I chose to go out on our own, who would care for Wil while we were gone?
I also felt the same when people talked about not wanting to live past a certain age. One night after a sporting event, Matt and I went out to dinner with only 2 friends that I knew and the rest were acquaintences of Matt’s. We were all spread out down a long, rectangular table. A man about my age and his girlfriend were seated directly across from me. During the course of conversation the man said, “Well, I don’t want to live past 80.” I then asked him why that was so. His reasoning, as you would expect, concerned his own abilities. I then asked him, “What if you had a child with a disability that relied on you? Would that change your mind?” He stared blankly at me.
We only see what we know. But there is so much more to see than what we know.
This past fall, I was seeing things just as that man across the dinner table. A tightly woven, blocked perspective.
If my mind stays stuck on certain freedoms that I don’t have, how will I open my mind to see all the freedoms that I do have? And all the freedoms available that I don’t yet see.
Wil continues to grow and expand in his maturity because he sees beyond a finish line to growth that many of us draw for ourselves. Wil’s creativity and spontaneity knows no bounds for the same reason. At one point, we stopped seeing branches that could be created to form Tree Wil. In fact, now many of us walk past branches that we don’t see at all.
There are so many things that I do not see! And Wil reveals that to me every day, many times a day. So why can I not unravel the heavy, clingy prickly parts of my own life and instead view them in a new light? Why not let the brilliant, glittery strands elevate my perspective?
Why, because my life may look different than another’s, can I not shine light on a whole new natural order of things? Why must my natural order match another’s?
What I see – and more importantly what I don’t allow myself to see – are the only blocks to my very own freedom no matter where I go, or don’t go.
We may believe our thinking is correct; or it is good—that we are good people.
Even those of us that call ourselves open-minded may find we have unwittingly closed off our minds when spending time with individuals with disabilities.
Why is this?
Because we have to see it their way first to understand. And many times — in some cases most of the time— their way is not easily readable. So we push our agenda on those with disabilities.
Individuals with disabilities’ way of communicating may be very different, or even non-existent in a verbal sense, so actions must be carefully observed. And even then we may remain clueless. It takes too much patience, and so we, even unconsciously, push our way on them, or we ignore them.
Our own belief system must be suspended to decipher theirs. We must let go of trying to be “good” or “helpful” because our version of what is good or helpful may not be for them. This very fact is likely the most challenging, and yet the most empowering process, in our very own lives.
When we suspend our own belief system in order to understand theirs, something shifts within us. Something bigger, something higher — spiritual even.
This process has no end. In fact, in 16 years I’m only just beginning. I’m stronger than I’ve ever been in trying to understand Wil, and understand the world’s reaction to him. I’m learning as a parapro to understand many differing abilities. It’s challenging and I need the expertise of those around me, because again what I think of as being helpful may not be helpful to them.
But it’s also so amazing to understand what in some ways may never be understandable. It wakes up something in me. Not because I’m trying to be a good person; it is because I truly want to understand what these kids are trying to say.
Those with disabilities are true gifts to us all—and yet this population is so very ignored and misunderstood. We must first forget ourselves, in full effort to understand another, and in that we find a stronger constitution of our own selves within.
At 53 years old I am a student. At 89 years old I will be a student. When I say goodbye to this world, I will be a student.
Yesterday, I was trying to help a student who has autism. I was kind. I gave this student squeezes, I spoke calmly; soothingly. This student’s aggravation grew.
I see a lot of “Be Kind” bumper stickers. “Be Understanding,” in my opinion, is where we need to “Be,” but that’s too substantial for a bumper sticker.
I looked to the teacher for advice with this student. The teacher explained that this student was working through inner thoughts; likely about an event that happened earlier at home that we knew nothing about. This student needed space to verbally work through those emotions.
This explanation clicked immediately in my mind. It made sense in the way some times physical touch and calming words are needed; while others space is required. But without that explanation, I don’t believe I would have seen this difference on my own. But now that I did, it was set in place in my mind and I will now be better equipped to help this student when another such happening occurs.
Every day, in this way, I gain new understanding. I gain new confidence and strength in helping give these students what they need to move forward.
One of my friends, whose son has autism, said she wishes, just for a moment, she had a special key to unlock his brain, walk in, take a look around, say, “uh huh,” then close his brain back up and move on with life.
Full understanding is an unattainable goal, but when we shoot for the moon, we can reach the stars; even if it’s one star at a time.
I’ve been asked more times than I can count stars, “How do you have such patience?”
I’ve used the word “patience” regarding Wil in my stories about helping him through “stuck” patches. But now, after having the few months of experience in this work that I’ve had, my perspective on “patience” has shifted.
Now, when I consider that word, “patience” is exercised when I don’t want to take the time to understand. When time is urgent, and Wil won’t go. When I want Wil to cooperate and he won’t. So I wait him out. But when I truly learn to read his cues; when I anticipate what may happen, when I try to take the “key” so to speak and unlock what is happening in his mind, that’s not patience. That’s being a student; that is cultivating an understanding. And when you unlock even a piece of understanding, the elation is beyond words.
To truly fill up the well inside of you, don’t just “Be kind.” Be desirous to learn. Be desirous to understand. Be desirous to be a perpetual student. Reach for the moon, and even if you grab one star, you’ll “Be” substantiality beyond what any bumper sticker can preach.
Yesterday, checking out at the grocery store, the grocery clerk commented on the cupcakes I bought. I said the cupcakes were for my son’s classroom for his birthday.
The grocery clerk asked how old my son was. I replied that he was my baby, and it was hard to believe he was already 16 years old. I shared that he has Down syndrome and his Life Skills class really enjoys birthday celebrations. She nodded her head silently and continued to check my items without another word. Ugh, I thought, I overshared.
After that pregnant pause she said her baby was 35. She went on to say her son was recently diagnosed with Schizophrenia. But he didn’t believe he had Schizophrenia; that everything happening to him was real. He was in the hospital, so at least they could be sure he took his meds, but when he got out, she’d be the one to ensure that.
Wow, you just never know what people are going through. Here I thought I shared too much with the grocery clerk; but rather unknowingly created a vulnerable space for her to share what was heavy on her mind. Though it was heavy, in a way we were both lifted by that encounter with one another.
I pulled up in the driveway at 7:45AM after coaching. Just as I was about to exit my car to go inside our home and check on Wil’s readiness for school, he ran outside and into the car!
He was fully dressed, complete with his hoodie, backpack and even socks (which sometimes prove challenging for him to put on) under his Crocs.
Ever since Wil chose to set his own alarm and get up and ready for school on his own a few weeks ago, he’s been gaining momentum by the day. At first I had to nudge him with a few things. Today, Wil whittled it down to zero nudges, with a bonus of him walking outside to meet me (rather than my coming in to meet him).
Last year he simply wasn’t ready for this next step. There were too many “stuck mornings.” But in true “Wil fashion,” when he’s ready the next step turns quickly into a leap. It’s like what was once stuck is now a well-oiled locomotive that quickly gains forward momentum.
I’ve learned over the years to take Wil’s milestones a day at a time. To not look too far ahead; and yet to keep trying and never give up. Because over and again his readiness builds ever so silently under the surface, and when it emerges for us all to see, it’s like BAM! Here we go!
Yesterday I went to Wolf’s Westside Automotive Service for an oil change. I had been there the previous day to have my tire patched. When I came in for my tire, the front door was propped open, the garage bay doors rolled up, and a refreshing breeze flowed through the lobby.
Yesterday was just that much warmer, so the bay and front doors were closed; a unit air conditioner cooled the lobby.
The owner, Pete, came into the lobby from the garage, sat down across from me, and delivered an update on my car’s service. Our conversation transitioned from the car to fitness and then into a story about his friend who has an adult daughter with Down syndrome. Though I don’t know Pete beyond the walls of his garage, in his storytelling, I heard true understanding. To attain that, without a child of his own with Ds, requires an openness to understand.
His shared story, and openness, were especially timely and meaningful to me as I’ve recently experienced the challenge of closed minds at a new level. I admit I’m somewhat naive in this area; thankfully. My fighting skills are weak; again thankfully. This town has always embraced Wil. I’ve needed to advocate, yes, but advocation is a conversation when you advocate with open minds.
With Wil getting older and other certain circumstances, I have now experienced lack of understanding, and the unwillingness to understand, on a broader level.
It’s hard to explain this life because a little means a lot. How do I explain, that every time I drive in the car with Wil, and he belts out Luke Bryan lyrics with complete accuracy, the elation I feel? That every word he forms beams me back to stretched-out years patiently waiting and diligently working on forming his first words? I have a million such stories.
All I need is a little crack in the door of a mind to get through. And yet, I physically feel the air fall dead between myself and a mind that is closed. I find this disconnection rarely intentional, and not meant to be hurtful. It’s not lack of experience with a disability that is the issue, it’s the unwillingness to open a door to understanding. Even the slightest creak of a hinge is all I ask. But for reasons of their own, deep within, they don’t want to know. The door remains closed. I find ways to keep knocking.
But not yesterday. There I sat, in our small town, for an oil change of all things, and with the natural flow of conversation a story was shared with full understanding. There was no knocking, no prying, no trying. The air conditioning was working, but all I felt was a needed breath of fresh air.
Rain drops hit the pool deck. It was sometime around 1980. A group of about 10 of us kids sat on our towels joking that we needed a sun dance. Troy jumped up, raised his arms to the sky, kicked his legs and danced like no one was watching. We cheered Troy on from the sidelines. Troy’s brother quickly grabbed Troy’s hand and walked him to the locker room. Even though I didn’t really know Troy or his brother, I knew Troy had Down syndrome. Beyond that, I knew next to nothing about Down syndrome. I knew Troy went to a different classroom at school. I knew there were many doors closed to Troy that were open to us. And I didn’t know, until years later, that I personally closed one of those doors on Troy that day.
When Wil was about 7 years old, he developed a fear of going to the dentist. Our dentist said he could no longer treat Wil, and recommended a dentist who specialized in working with children with special needs. I walked into her office with great enthusiasm. She was sure to understand our situation and work with us. Instead, she was brusque and barked orders. But I brought Wil back to her because she was the labeled expert. She became increasingly frustrated with Wil, and it took all my energy to convince Wil to walk into her office. She told me she would need to use the papoose to restrain Wil. I looked at her like she was some medieval sorceress. There had to be a better way. I took Wil’s hand and couldn’t get him in the car fast enough. I threw my sunglasses on so he wouldn’t see me cry. (Wil gets very upset when he sees people cry, especially me.) I blasted our Music Together CD and we sang songs the entire way home in my attempt to put the dental experience as far behind us as possible.
I took a chance and called our new local dentist, Dr. LaRock. I figured since he was building his practice, he might be willing to work with us. Dr. LaRock said he would do his best to get to know Wil and better understand his situation. He thought their dental hygienist, Wendy Carpenter, would be a good fit for Wil. Wendy blocked out a two-hour time slot for Wil’s first visit. She didn’t perform dental work, but used their time together to form a relationship and familiarize Wil with the equipment. Wil left the office asking when he could come back to see Miss Wendy and Dr. LaRock again. With Wil’s words, I breathed out my pent-up anxiety and about melted in a puddle of happiness on the spot.
“Every 6 months, Wil.” I said. “I’m so proud of you.”
Wil grabbed my hand. “Hey Mom, let’s run!”
“Hey Wil, I think today deserves a dance!” Wil is never one to turn down a dance. We danced down Main Street, waving our arms, kicking our legs, and spinning around like no one was watching.
That dance was for you, too, Troy. I’m sorry I chose to cheer from the sidelines rather than stand up and dance with you in the rain. Now, I’d never miss an opportunity to dance and throw open as many doors as I can. One of them is bound to lead to something good.
'WIL'ingness = Willing to Embrace Extra in Life 