Wil is graduating; this is a hard one. Raising Wil I’ve gone through what I think of as “3 acceptances” so far:
Acceptance of Ds
Acceptance of new behaviors of puberty. (That was a tough one!! That truly took a village!)
Acceptance of transitioning out of high school.
Wil is ready to graduate, though; he’s ready for this next step. But for me, there is so much. So, so much. All that I personally have navigated through his birth and school years. The scenery is different raising a child with a disability. It has to be because disability forces us to see life in a different way.
There are two boys, Eli & Ethan who have higher levels of autism. I love watching their reels. They are quirky and fun and frustrating. When you see them for who they are, you can’t help but fall in love and feel the shift of scenery as you tune into their lives.
I can feel Eli & Ethan’s mother’s joy when one new word emerges. I understand all of her pauses, giving her boys the time and space to speak.
Our world with disabilities is warp speed and turtle-slow processing all wrapped into one.
I’m standing here spinning, on the edge of this next level. It’s dizzying but all the same I’m thankful for the eyes to view the world from this place. ❤️
Our Human Services leader is telling us to be weak. To be devasted by a diagnosis. To feel damaged because our children are neurodiverse and may not pay taxes.
I was devastated but I CHOSE to RISE! I CHOSE to love my child for who they were and to find others that gave me strength when I couldn’t yet find it in myself.
Now I am a warrior.
I love my child and have a new appreciation for differences that I would not otherwise have if I were justified by “leaders” in my devastation. In fact, thats how so many with disabilities were housed in institutions. The photos from that time are unbearable to look at.
True strength is doing the INTERNAL WORK of understanding neurodivergence. Not pointing from the outside looking in and making judgements. And telling an entire country to make that judgement.
Here is my advice AS A LEADER BECAUSE I LIVE IT. Feel the devastation if that’s real for you, then choose to walk in it and feel the exhilarating growth of what seeing life from a new perspective feels like. That’s being a warrior, my friend. That’s being a true contributor, a true leader, to society.
Or choose to point to what you see as devastation and lack, and watch the lack and devastation grow because that’s what you choose to believe in.
I know what I have chosen. I chose to do the work of understanding neurodiversity, and I still am. It’s a path worth eternally growing in every.single.day.
Don’t let this so called leader set the clock back on our kids. Listen to the true leaders. Those of us who walk the walk and would never, ever call it devastation. Though many of us did once feel that devastation, we didn’t stand there long.
It’s a journey that first chose us, and now we undoubtedly and assuredly choose this Journey.
Not so long ago, if anyone gave Wil choices he’d pick the last choice offered.
This morning I asked him, “What dipping sauce do you want? Ranch, mustard, ketchup or honey mustard?”
“H — Ranch.” Wil corrected his auto-response for what he wanted.
Life is full of tiny miracles embedded within everyday occurrences. Our kids with disabilities slow life down just enough to reveal these hidden gems for the light they are.
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.
Wil chose not to wear green today. Just because he was told to. I wouldn’t be surprised to find him dressed in green tomorrow; because it would be his choice. Wil did follow the color code on Valentine’s Day. He had been coveting Elizabeth’s neon pink shirt and she let him borrow it for the occasion. And, Wil is all about the love ❤
During Spirit Week at school he makes up his own mind to play or not to play. If it’s wear black day, he may purposely avoid black — or go all in with hat, shirt, undies, pants, socks and shoes in black. If one of those pieces — even the undergarments — is not black, he may abandon the whole outfit even if we have minutes to leave for school. However the last time the school had Dutch Day, he spent careful time the night before selecting which Dutch shirt, which Dutch hat, and what pants and socks would go with.
On World Down Syndrome Day 3/21 (representing 3 copies of the 21st chromosome), ironically he has refused to wear his crazy socks on certain years. And believe me, he has a drawerful to choose from. He’ll wear his snowflake socks in July if they match his shorts. He wears his blue star socks whenever singing the Star Spangled Banner in choir. He has socks that look like a fish is swallowing your leg, which he said he’ll wear this 3/21, but I won’t know for sure until seconds before we leave for school if that choice will stand.
Wil could care less that you are wearing crazy socks on a certain day of the year. He’d get more joy out of your socks if you wore snowflakes in July!
Wil loves the Buddy Walk because it’s a big celebration of people in-person, coming together to enjoy a great day outdoors. Wil’s not out to make a calendar or societal-driven statement. Wil’s about making friends and living life fully his way.
Let’s celebrate Friendship over counting chromosomes. Let’s celebrate who we are behind the date on the calendar and behind the clothing. Let’s celebrate how different we are, and how different we aren’t. No matter what you wear, or what day you wear it, Wil will love you anyway, every single day of the year.
In embracing our vulnerable population we embrace our own vulnerabilities.
We crave Love. Love is the base of all things. Love is survival. We crave, live and breathe for Love.
In embracing individuals that we previously misconceived as having lesser value, we find in fact their value is greater than ours as theirs is the truth-pathway to LOVE. In embracing those we do not fully understand; we must find within ourselves a deep patience and seek to view life in new and fresh way. It is in this way we find Love — a love deeper than we knew existed. A love that touches and speaks of God. We feel God and His Presence even if we are not religious; even if we are non-believers. Whatever we believe, we cannot deny what we feel. We call it Love. And yet it matters not what we call it. It only matters that we FEEL it.
Once we are touched by that feeling, we crave more. This Love lifts us, lights a fire within us. We find it hard to believe it was something we closed ourselves to. But we did not know we were living behind a closed door until our child with a disability; or our experience with individuals with disabilities opened the door for us. The blast of fresh air is what alerts us once we open our minds. It blasts us with a gust, not unlike a hurricane; it forces us out of our closed mind so far that we can never go back. We never want to go back. In fact all we want to do now is pound on closed doors in our desire that those behind the closed doors know this Love.
We see the fear, and know the difficulty to get past that fear. But once you feel the blast of fresh air in your face you cannot but want more of it, and want more of it for others. And so you advocate for your child, but it is so much more than equal rights and acceptance. It is a Love, a Love for all that lays hidden. A Love that is locked away inside of us. We are scared of it’s immensity. But in the fight for your child you release it. You must, for their sake more than yours. And you find in this unlocking a Love greater than you ever knew existed but it does exist in immensity all around you. And when you breathe it in fully it grows and grows and grows. There is no end to it, and though it is bigger than you could ever conceive, even a small slice of it breathes new life into. You cry in the sheer love that you feel. And you know you can never run out of that love because it is always there, it is bigger than anything your mind can conceive.
You must re-open yourself to this Love every day. Recharge yourself with it. When the doors start to shut due to habit or other’s actions — your child opens the door for you with a kiss on the cheek, a simple gesture, or a silliness. And when you try to describe this type of grand simplicity that has the power to open a door, those behind closed doors see only the simplicity of the gesture, as they have not opened themselves to the grandness. They refuse to open the door to this Love, staying in a sheltered space they know. Fully unaware that the immensity of Love is available to them if they only unlock the door. But when we don’t know, and what we only know is behind the door there is great security in that. There is great control in that. And we think we are thriving when really we are not. We have created a life that feels good behind the closed door. Even when it doesn’t feel good, it is what we know — how terrifying to go outside of what we know.
When we spend time to truly know and understand our vulnerable population, oh, what LOVE. It is open, it is free. Our children never tire of opening the door; it is their nature. It is on us to open ourselves to them.
You will know when you feel the Love. This Love is yours, it is all of ours. It is in endless supply. Let us circulate it. Let us ventilate closed doors. Let us embrace our vulnerable population.
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.
“The Buddy Walk is only one mile walk. I think you can handle it,” I joked. “And really, with so many people with Down syndrome, we don’t move fast!”
When The Peanut Butter Falcon was available for streaming, I didn’t want to watch it on my own. The viewing experience would be fuller with friends who knew Down syndrome. Whether the movie was good, bad or otherwise, we’d share in that knowing together.
A group of us moms got together at my house. The majority of us were raising teens, or kids that teetered on the edge of teenage-hood. We poured generous glasses of wine, loaded tiny decorative paper plates with dense dips, sturdy crackers and crunchy veggies, squished together on the couch, pulled up spare chairs, and settled in.
We erupted in laughter in the same scenes together, we shared audible silences in the same scenes together, tears leaked from the corners of our eyes in the same scenes together, and we enjoyed scenes of pure entertainment in the same scenes together. And we all wondered together, over the rolling closing credits, why Zak’s (the main character with Down syndrome) duration in underwear was deemed necessary.
Then in our post-movie review, we all first recalled the same scene together: Tyler’s adamant assertion to Zak that he stop asking him questions; there was a slight pause then Zak picked right back up with more questions. We broke out in laughter again and remarked on how our kids would do the same.
Our review continued along the same vein; how relatable Zak’s behaviors were to our own kids’. And where there were varied differences, we could still fully relate.
If you are a parent, it’s highly likely you have your own friend group of parents who have children in a similar age group.
Though your kids are fully their own individuals, you easily laugh together over shared traits; you easily share audible, thoughtful silences over certain situations, and likely enjoy the pure entertainment in others. Though each child has their own unique differences, a group of friends raising children of a certain age group can fully appreciate and relate to another’s experiences through their own.
There is running joke at our annual Buddy Walk: “Who is going to win the Buddy Walk this year?”
I’ve been to 15 annual Buddy Walks (since Wil was 7 months old). I can guarantee about 70% of the kids will either decide at some point to sit it out (more than once), run to a play structure, or take some sort of tangent. Our kids can be very quick, and cunning in their moments of escape, but typically in any other direction than the paved walk. (Some may argue my statistic is on the low side).
Laughing about our kids taking their time to get to the finish line is not a slight against them. Its relating a typical scene in our lives that we share together. Any one of us parents would say our lives are fuller for it.
So sometimes I forget when I make “off the cuff” comments like that. It’s not a familiar scene to everyone yet — it wasn’t one to me once — and we are both watching a movie of our own. When those scenes find a way to merge, I have no doubt we’ll share in that laughter together.
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.
At the airport yesterday, Wil was struggling a bit with some young children crying.
As a Starbucks was nearby, I asked Elizabeth to walk him over there while I stayed with our carry-on luggage (as Katherine was in another shop).
Wil was reluctant at Starbucks too, so Elizabeth walked him back to sit with me. She then walked back to Starbucks to get herself something to drink. A woman walked up to Elizabeth while she waited in line for her drink. The woman said she observed Elizabeth with her brother, and expressed her admiration at Elizabeth’s mature patience and how she talked to Wil. Then the woman said, God Bless, and walked away.
Elizabeth was surprised, yet pleased, by this. She was just being a sister to Wil as she always is (and Katherine has this same mature patience with Wil, as well), and didn’t see her actions as anything different than normal behavior.
In Elizabeth’s everyday life, she lifted the spirits of another, and she was uplifted in return.
I’m proud of Elizabeth (always), and also proud of the woman who had the courage to step up and acknowledge Elizabeth.
'WIL'ingness = Willing to Embrace Extra in Life 