Open Book Ice Cream

My high school science teacher was amazing. And I had very little interest in science. He practically leapt off the floor explaining the periodic table. It was like someone just put this amazing hot fudge sundae in front of him and he couldn’t wait to dig in.

What amazed me the most was that he taught this same lesson again and again, year after year. Yet every single day, he brought the excitement. To that same old periodic table. Everything fit in this nice, little box. The combinations, even if dynamic, were predictable. No surprises. I was bored out of my mind. But I loved my teacher. He almost made me want to love science, just because I loved his enthusiasm for the subject. 

Then, in college I discovered blue book tests. I could scrawl my thoughts, in glorious freehand, across the blissfully empty white pages with pale blue lines. An empty white page to me is one of the most beautiful sights there is. And to take your own pen and feel the flow under your own hand, now we are talking digging into rich, luscious hot fudge sundaes!

And I could make it a different sundae every day! Carmel on smooth, groovy days. Strawberry on fresh, sticky, summer days. Pineapple when I was feeling prickly and tart. Blue books were so beautifully, uniquely open-ended — there were no predictable combinations when interpreting a book or poem, even if the character’s names never changed. Every person is full of surprises!

When Wil went from preschool to kindergarten, he was able to string beads — big beads with big strings. But he had to take a test to evaluate his skills. In the test, he was to string a small bead with a small string. He couldn’t do it. There were only two boxes to check. A yes box and a no box. 

As a result, Wil entered kindergarten testing at a 6 month old fine motor skill level. He was well beyond that. The test failed, Wil didn’t. The same thing happened when Wil went to his 1st endocrinologist. Wil didn’t fit in the predictable boxes. As soon as I checked the “no box” that he hadn’t achieved a certain skill, I was told to skip to the next page. “But, wait, he can do some of the other skills on this page.” “No, he can’t.” Was the answer I received. Where was the blue book for me to fill out about my unpredictable son?

Upon the news of Wil’s kindergarten testing results, his speech therapist spoke up and said that there will be very open communication between Wil’s preschool teachers and Kindergarten teachers. That though the test measured certain skills, it will be the open communication that determines where Wil will start with his ability level. I felt the beautiful, crisp new pages open upon her words. 

I also found a new endocrinologist. I knew she was the one because when I told her of our experience, she handed me a blank sheet of paper along with the test. She said to write down all the skills the test does not cover and we’d go from there. Hot fudge sundae, anyone?

On February 5th, 2007, I learned first-hand that you can change just like that. That the person you were one second can change in the next. I couldn’t force Wil to be a typical boy. My choice was to learn what all of this meant and to write our own pages with it. That is why I’m deeply offended by any claims to “cure” Down syndrome. He is a beautifully, varied and valuable human being and his story is just beginning to be written. Why burn the pages when being part of the story is so much more meaningful?

I loved my science teacher even though I never grew a love for science. What I learned most from him is we all have our different passions. And not a single one of us fits in a perfect, little box. That may be why he felt the love for his periodic table. How everything had an answer when life didn’t. And for that, I love my blue book pages. Where I can scrawl out, in long free-hand, the ever changing and evolving interpretation of what’s around me. As long as we can make our life new every day, be it by the periodic table or a blue book, then it will be a place we can’t wait to dig into…and we get to choose the topping! 

Timberlake vs. Timbuktu

Wil had a quiz to study for last night. We decided together that he would study while Katherine was at CrossFit. If Wil comes along to CrossFit for a task such as studying, we typically go to Bigby Coffee and he gets a hot chocolate with sprinkles. After a few sips, some silliness and conversation, we get down to the business at hand. Last night he said no to Bigby.

“Where do you want to go?”

“Hmmm, don’t know.”

“How about McDonalds. You can get a chocolate shake, then we’ll study for your quiz.”

“Ok.”

When we arrived at McDonalds, we had an hour until we needed to be back to pick up Katherine. Wil made a quick scan of the play area. It was empty.

He tugged on my arm. “Mom, in there.”

“Ok, let’s order your shake first.” We walked up to the kiosk. He squinted.

“Put on your glasses, Wil.”

“No.”

“Here, just try.” I handed his glasses to him.

“Hey, I can see it.”

“Um, yeah silly. That’s why we like you to wear your glasses. You can see so much better.” He wears glasses for reading and occupational therapy, other than that he has no interest in them.

Wil made his chocolate shake order through the kiosk, reading every word on the kiosk proudly out loud.

“Great job, Bud.”

After the order was complete, he pulled off his glasses, and headed toward the play structure, his arm extended back to me with the glasses.

After playing in the play structure with lots of “look at me’s!” two other young boys entered. The increased noise level was enough for Wil. He made a quick exit. I followed him with his shake. He picked a table in the main area and we took a seat.

“Here are your glassesWil. Let’s do a little studying now.”

The subject of the quiz was the Empire of Ghana. His teacher condensed the lesson for him. After we got through the definition of Mali, the Niger River and Mansa Musa, I asked him, “What was the major trading city when Mali was at the height of it’s power?”

“Timberlake!”

“Wil, Justin Timberlake is a singer. He’s the voice of Branch in Trolls.”

“I see your true colors shining through, I see your true colors and that’s why I love you…”

“You love Trolls.”

“You?”

“Yes, I love Trolls too, Wil. And Justin Timberlake is a really good singer, and dancer. But the answer isn’t Timberlake. Let’s try again. What’s the major trading city?”

“Timberlake!”

“Wil.”

“Timberlake!”

“Dude, come on.”

“Timberlake!”

“Ok, it’s Timbuktu. Can you at least say Timbuktu for me?”

“Timberlake!”

“You are so silly. Do you want to watch a Timberlake video?”

“Yes, Can’t Stop the Feeling.”

We watched Can’t Stop the Feeling and True Colors. Then we got back to the quiz. I jumped ahead to the next definitions, we got through those fairly smoothly with the exception of mosque. He looked hard at the word and came out with “message.”

“Wil, good try, it’s mosque.”

“MosKE.”

“That’s right, say it again.”

“Message.”

“Honey, you just had it right. Mosque. Say it again. Mosque.”

“MosKE.”

“Good, again.”

“MosKE.”

“Good, ten times fast.”

“MosKE, MosKE, MosKE, MosKE, Ugh, ok Mom.”

“You got it.”

Then circled back to Timbuktu.

“Ok, Wil, what was the major trading city?”

“Timberlake!”

“Can you at least tell me you will answer Timbuktu on the quiz?”

“Timberlake!”

Special Needs, Peers & Boundaries

Many schools have a peer-to-peer program in the middle and/or high schools. These peer-to-peer programs are where a typically developing student is linked with a student with special needs. At our school this program is called Connect. Wil, who is in 7th grade, has been linked with two high school students, a male and a female.

Wil adores his Connect friends. They visit him during his Independent Life Skills time in the resource room. They work with him on projects, crafts and cooking. He most especially enjoys cooking with his Connect friends. It’s been an enriching experience for Wil to work with his Connect friends, and I believe for his Connect friends to work with him. On days when Wil is feeling unmotivated, his teachers will remind him he is seeing his Connect friends, and that will–on most days–perk him up.

Being in 7th grade is an interesting time for most students. Their bodies are changing, their hormones are firing, and their independence is sought. Wil is no different. His assertion for independence has him taking a few liberties with his Connect friends. He may pick up one of their spoons and throw it on the floor. Or give them a hug then mess up their hair. He’s pushing the boundaries, and also looking for attention. If he were a typical student throwing a friend’s spoon on the floor, or messing their hair, he’d get a “Hey, what did you do that for?” However, kids with special needs tend to get some extra latitude. Wil may get a laugh, rather than a reprimand. Or his behavior will go ignored as the kids simply do not know what to say. His typical peers want to be kind, and fear upsetting him.

I completely understand this, it can be complicated with the communication differences. Wil is not in elementary school anymore. Kids talk a lot faster, there is lightening back and forth processing, and Wil can feel lost in the sea of back and forth communication. A toss of a spoon, or a mess of the hair takes all of that back-and-forth and draws it to a halt. He gets the reaction he was looking for, everyone is kind and thinks, “Oh that’s just Wil,” and moves on.

If you decide to have a dialogue with Wil about why this is wrong and not respectful to friends, you will see his attention wander and probably before you are done talking, he’ll have tossed your spoon again. If you get upset with Wil, he may cry or shut down. He hears and feels the anger and takes this as an attack on his person rather than a correction of the act. A straightforward and firm, “Please do not do that. That’s my spoon, I was eating with it.” Or “Please do not mess my hair. I don’t like it.” He’ll understand that you don’t like it and why in just a few short words. I can’t promise he won’t do it again, but it will come to a halt the more that is said with each instance. And most importantly, he is being treated and respected like a peer.

This is why Wil’s relationship with his sisters is very beneficial. Basically, they don’t put up with his crap. If he does something like talking with his mouth full, Katherine will say, “Wil, that is gross. Babies do that.”

“I’m not a baby!” He will yell back. And that’s the end of that.

Or if he is badgering his sisters for attention, they will change gears with the power of distraction. “Hey Wil, let’s go walk Woody.” They will remind him to get his boots on, that it’s muddy. On the walk, Wil will find every big stick he can and show it to them. His sisters will ooooh and ahhhh at first, then growing tired of it, they will tell him that’s enough.

In that way, he learns boundaries just as naturally as anyone else does.

In many ways Wil is like any typical peer. When he is misbehaving, that misbehavior should be commented on and corrected. When he’s getting annoying by repeating an action over and over, he should be told, ok, dude, that was cool at first but now that’s enough.

Sounds simple, right? So why doesn’t it happen? Wil acts younger in many ways, so it’s easy to treat him younger. Wil is very sweet, he loves unconditionally, so his friends don’t want to hurt his feelings. All of those reasons are completely understandable. Back when I was that age, I would have done the same thing. That is also what makes these situations excellent learning opportunities. Just this morning Wil gave me a hug and started messing with my hair. I pulled out of his hug, looked at him and said, “Wil, I love your hugs. But please do not mess with my hair, or anyone’s hair. People don’t like that.”

“Ok, Mom.” He stopped messing with my hair and gave me another hug. He will likely mess with my hair again on another occasion, when he is feeling feisty. I will again say the same thing in the same way. Eventually he will stop doing it. It can take multiple reminders before he decides to respect those boundaries. Sometimes it takes just one. But the important point is the boundaries need to be set.

Wil’s Connect friends are learning how to set boundaries with Wil and Wil is learning how to respect their boundaries. What it comes down to is mutual respect amongst peers, no matter what the similarities or differences are among them. This Connect program carries with it the essential life skills of working with varying abilities and personalities with care, firmness, kindness and respect. And this crew is proving what a great time you can have doing just that.

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