Special Needs Siblings

These two young women have stepped up to the plate more than most realize; and they do it with love and grace.

That said, Katherine and Elizabeth treat Wil like any little brother — loving him, being annoyed with him, and standing up for him. Their life requires an extra level that is not easy to understand, unless you also have a sibling or loved one with a disability.

If you do, you are probably nodding right now. Here’s to you, and to the path you walk, and to what you give to this world.

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Look Back/Move Forward

Yesterday afternoon Wil had a challenging moment. It’s been awhile since he’s tried to flee a situation; it was an impromptu situation with lots of moving parts. Of course, Wil’s challenging moment means a challenging moment for me and those around me, as well. After all was resolved and I had calmed myself down, I thought back on all the circumstances that led to that moment.

There are always impromptu and unpredictable moments; that’s life. Though I tried to be proactive in certain areas, I was already way behind in others. And once I was behind, I was left with no choice but to chase Wil. Please do not mistake my comments for blame on myself or anyone else. There is no blame; there is only the situation, the string of events that unfolded within the situation, and how I can do better next time for Wil, myself and those around me.

Thinking back, now armed with the knowledge of how the events unfolded, I see ways I can be more proactive. As the unpredictables of that situation are now predictable. I now know how to do better for Wil, for myself and for those around me.

Even so prepared, there will be fresh unpredictabilities; cause that’s life! I will again need to reassess the events leading to those challenging moments — when the unpredictables are then predictable — and learn again how to be better and do better for Wil, myself and those around me.

Challenging moments are never a step back; unless we don’t look back, turn the unpredictabilities into predictabilities, and learn and grow from them. In fact, they can be quite an empowering lift forward once the dust has settled.

To “Be” or not to “Be”

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.

The Perspective of Time

Wil has grown so much in his 10th grade year, and I can’t thank Kristi Campbell, Hope Schook and Heidi Drake enough for that! For this fact, it gives me space to snicker when I read about a day like this:

10:05 Refused to work
10:08 Turned it around
10:25 Refused to work
10:30 Turned it around
1:50 Refused to work
1:54 Turned it around

Just last week, I worked with a paraprofessional that subbed for Wil in 1st grade while his primary para was on maternity leave. We laughed that the main topic of daily conversation then was how to get Wil out from under the table most of the day. At the time, though, it was no laughing matter!

But with time, collaboration & communication with caring educators, we’ve come a long way, baby!

We are on to larger concerns, as Wil is an adventurous guy; without fear/recognition of danger which will likely be on our radar for years to come.

So seeing these little bursts of stubborness that he can resolve in minutes, is him showing his personality in full force and finding the self-desire within him to turn it around for a better day — while giving his teachers a run for their money! And we wouldn’t want him any other way!

The Cure

My son will not play in the NBA; my son will not invent a new vaccine. My son will not design a software program nor manage your finances. My son will not drive a car nor drive a recycling truck.

But my son sang for nearly 4 hours on our drive up north without any music playing other than what was in his head. My son can put an impromptu Luke Bryan medley together faster and more expertly than Luke himself. My son knows the lyrics to well over 100 country songs. My son still jumps in puddles at age 16, finds reasons to laugh over things we’ve long forgotten, and has a joie de vivre that is enigmatically contagious.

My son is also frustratingly slow when he doesn’t want to do something, often coming to an abrupt halt. He will not be bullied, pushed or cajoled. He will do things in his own time; not mine and not yours. My son is hurt deeply when others try to force their timeline or opinions on him; yet he doesn’t hold a grudge against others. He quickly forgives, but he never forgets.

My son has his own opinions, idiosyncrasies, habits and preferences. My son, just like you and me, is fully human in beautifully challengingly ways. That is where we all can meet.

Wil does not have to win a pulitzer prize to prove his worth to this world. In fact, his having a disability gives us the opportunity to be better humans than we are. Wil, in his own way, is a pearl.

Wil was always a pearl; it was my heart that was the sand that needed to be molded and shaped.

Many do not take the time to look within their own hearts to see the sand; and this is required to take the time to understand my son. To understand Down syndrome. Our closed minds are the sand that we must mold over time and experience, and in that we find the pearl of his existence. And the beauty of that journey is we come to value what human life is about. It’s more than achievement. It’s more than habits. It’s about remembering the songs in our hearts before the sand gritted and obscured them.

I don’t want a cure for Down syndrome; I want a cure for a belief system. I want to turn sand into pearls within us. If we can create vaccines and information systems and recycling systems, can we not do this?

Something New

Wil and I were at the orthodontist’s office. He has a top set of braces; this appointment was about a bottom set to correct his underbite.

“As many kids with Down syndrome have a smaller upper jaw, the underbite is common,” the orthodontist said.

The commonality of an underbite in people with Down syndrome, I knew— what I didn’t know was why! I sat on a blue swivel chair next to Wil marveling at my casual lack of knowledge!

Moments after Wil was born I learned about hypotonia, as the nurse said Wil was “floppy” which is an indicator of Down syndrome. After 3 excruciatingly long days for Wil’s genetics test to prove what we already knew, I met with a geneticist. I learned all about those squiggly, little chromosomes. I learned about his stubby fingers, the space between his toes, his small nasal passages that would later cause terrifying stridrous breathing with days and nights at the hospital. I met with a cardiologist for the first year of Wil’s life and learned with relief that the little hole in his heart closed on its own. I learned about the commonality of clogged tear ducts that unclogged on their own soon after Wil’s first birthday. I learned when Wil was 6 months old he had hypothyroidism, about Wil’s tiny ear canals causing multiple infections, about his mild astigmatism and the therapies he would need and why he would need them.

I learned and learned and learned.

I continue to learn and learn and learn. What will life look like after high school? What post-high school programs are available to Wil? What job training is available to Wil? What social opportunities? What about girls? What about independence? What about college? And most importantly, what will Wil think about adulthood and how will I navigate that with him?

But on that blue swivel chair in the orthodontist’s office, I really didn’t even need to know why Wil had an underbite. I didn’t have to seek out any specialists, programs or community support. I didn’t need to create anything or join forces with others to create something. I just sat there and listened; and learned something casually new about my juice box-toting boy who is now turning into a man.

The Giggle Creator

Wil was just giggling to a tv show. Now he squished himself next to me in the Lazy-boy, as I was reading quietly, and started giggling. When I made him breakfast earlier, he danced around the kitchen, giggling.

Wil’s a giggle creator. 💙😃

Discarding “Popular” Wisdom

“The first problem for all of us, men and women, is not to learn, but to unlearn. We are filled with popular wisdom of several centuries just past, and we are terrified to give it up.”

Gloria Steinem may have had women’s rights on her mind with this quote, but it rings very true for our friends with Down syndrome. I was so scared when I received Wil’s diagnosis. Why? Because of an outdated belief system handed down to me from centuries just past. I had no other frame of reference; it was what I knew and the unknown is a scary place.

When I opened my mind; when I truly looked at Wil and accepted anything and everything to come — all the knowns and most importantly the unknowns — is when my world first cracked open, then burst open, and love flowed in place of the fear.

HAPPY WORLD DOWN SYNDROME DAY!! #WDSD2023

How We Celebrate

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.

Welcome

At a social function a man said to me that he felt sorry for people who had children with Down syndrome. How hard it must be. Then he met a woman he love’s daughter, who has Down syndrome. Now he can’t imagine life without knowing her daughter. He shared how much bigger and brighter life is.

Some heads won’t be knocked open, no matter how hard you fight, claw and shout. But there are those whose hearts will open without even trying. They only need to be invited in.

Welcome, my friends ❤️

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