I have recently gotten back in the pool (after a year 😅) thanks to our friend, Dawn, taking great care of Wil after school and honing in on his life skills learning.
While I swam Monday, Dawn’s husband came over to have a guitar jam session with Wil 🎸
When you have a dependent child, your schedule revolves around that child’s schedule. It takes a lot to find someone you fully trust, and that matches your schedule, so you and your child both can enjoy needed independence time.
Wil is my buddy, and he is so much fun! I’m thankful he’s not flying from this nest for some time to come. And yet, Wil is almost 19. He deserves someone other than mom all the time to expand his young adult life.
When I mention respite care outside of our disability circle, I receive a blank stare in response. That likely wouldn’t have been in my vocabulary either! But independence doesn’t happen without it when you have a dependent child.
When you meet someone with a dependent child, know that they most likely love having their child home, but at the same time, both parent and child need time to spread their wings, and that doesn’t happen without an extra set of loving, caring hands.
Our lives always include extras, and that extra includes extra special people with extra special hearts. 💕
Wil had a very hard morning. He would not get out of bed. Would not budge. Usually I tickle his feet. He laughs, sits up and says, “Hug Mom!”
He loves high school so even if he’s tired he is typically happy to get up and go. This morning was a throw back from the middle school years when hormones were running high and he had feelings he could not process or communicate at the time which lead to many new behaviors. But we emerged from that time; even if he has a slow start now, he can talk to me and work through it on school mornings.
I racked my brain as to the causes of his demeanor. My guess is a cold is brewing within him as I’m sick, plus he had Social Group Wed night and Music Therapy last night; he’s probably just plain tired.
As he laid in bed, he grew increasingly upset with himself for not moving, which ironically kept him in the “feeling stuck” loop. A wise special education teacher, Mrs. Hancock, shared with me that on these situations it’s about responding not compliance. I thought Matt, being a fresh person in the scenario, would help break him of this stuck loop.
I called my husband Matt at work on speaker phone. Wil shared with Matt that he was “upset.” I felt my heart jump up and cut through my stress with elation. For Wil to share his emotions in his current emotional state was a very important advance. After talking to Matt, Wil was able to unwind whatever was wound inside him and turn it around.
Wil started to get dressed but was still teary. I asked if he needed a hug. He gave me a tight one then I felt him loosen up. I knew then that he would be okay. I texted his teacher to let him know the situation and Wil may needed a calmer start to his day. I’m thankful he begins each school day in the life skills room rather than gen ed so he can go his pace to start and then gain momentum for choir, PE and art.
Our friend, Kate, had previously offered to drive Wil to school that morning, so again a fresh person always helps Wil’s demeanor and he adores Kate. When she walked in the door, she said she had his favorite songs ready to go in the car. Music to his ears (and mine)!
I was very rushed at that point — I hadn’t even brushed my teeth yet as I’d been trying to motivate and give Wil the time and space he needed for the last 30 minutes. I quickly made him his breakfast request to go — 2 turkey dogs with peppers, mustard and relish.
After he’d been in school for about 2 hours, I received a text from Jessica, whom I work with as a paraprofessional, forwarded a picture taken by Ashley who is working in his classroom. Seeing Wil smile big with his classmate buddies made me 🥹🥹🥹.
This morning was very hard, but as Mr. Rogers wisely said, “Look for the helpers. You will always find people who are helping.” ❤️
I walked into the parking lot area where Wil was to take his PEAC bike camp. I was overcome with a positive, uplifting feeling — thankfully this type of feeling is not unfamiliar. I’ve grown accustomed to this shift from breathing dense air into a higher atmosphere in only one step.
This atmosphere is one of people helping people. It is beyond a good deed. It is true unity. We innately know the difference as it’s the way we are supposed to be — together.
This is one of the many gifts individuals with special needs offer us. We only need to rise beyond ourselves to accept this handed gift.
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.
Last week, after swimming at the Saline Rec Center, I gave Wil a dollar bill and 2 quarters to buy a Gatorade in the vending machine.
He held the dollar bill in a pincher grasp (between his forefinger and thumb). It took him a moment to steady the dollar bill so it would fit through the narrow slot. Wil then secured the same pincher grasp on each quarter, which was slightly more challenging due to their size, and slid each one through the coin slot. I then asked him which Gatorade flavor he wanted. He pointed to the lemon-lime.
“Ok, do you see the letter and number under the Gatorade you want?” I asked. “Punch in those same buttons.” Wil punched in the buttons with care, and a lemon-lime Gatorade slid out of its place and fell to the bottom of the vending machine. Wil reached down, pulled his Gatorade out of the machine and raised it in victory.
I had a quick flashback of Wil sitting in his high-chair. Theresa, his speech therapist, was teaching him how to pick up a Cheerio with a pincher grasp. Wil tried to scoop it with his fist. The fine motor skills required to achieve a pincher grasp was (and still is to a lesser extent) very challenging for Wil. It took much patience, care and repetitive practice for him to achieve. Like many of Wil’s achievements, there is more than what is seen on the surface. Each success has a depth to it; like the rings within the trunk of a tree.
Our neighbor, Nancy, recently started taking Wil to Dollar General to work on his life skills. As a retired educator with the Washtenaw Intermediate School District, Nancy has years of experience working with people with disabilities. Nancy’s grown son has autism, so she understands the many rings of this tree as a mother, too.
When Nancy first took Wil to Dollar General, he just followed her around. This fact didn’t surprise me, but shook me up all the same. When Wil and I grocery shop, he may run ahead to pick out something he wants, or help me take items off of the shelf, but I’ve never given him more ownership than that. I realized, talking to Nancy, how easy it is to fall into familiar routines and miss obvious growth opportunities.
On Wil’s last visit to Dollar General with Nancy, I gave him $10.00. Elizabeth asked him to buy her Chapstick and I asked him to buy himself toothpaste. Then Wil bought himself a drink. The cashier asked Wil for $7.30. Wil gave the cashier $2.00. Nancy said, “Try again. $7.30.” Wil gave the cashier $3.00. Nancy said, “Try again. $7.30.” Nancy’s goal is to teach Wil to listen to what the cashier asks for. He then gave the cashier $7.00 and $1.00 more for the change (“One more for the change” is a term Nancy taught Wil for covering the change. Wil now chants, “And one more for the change!”).
As much as I revere how far we’ve come, and cheer with each new victory, I also fall unconsciously into repetitive familiar circles. Until a friend like Nancy comes along, shakes up the tree, prompts another look, another listen, and to try again. And that’s how the rings on the tree grow one more for the change!
'WIL'ingness = Willing to Embrace Extra in Life 