A B C D E F G H I J K L M N O P Q R S T U V W X Y Z
Sometimes people who meet Kepler make comments along the lines of “He’s always happy, isn’t he?”
Well, he’s happy a lot of the time, but not always. Case in point:
On the way home from dance class yesterday, he asked me to take him to Wendy’s to get french fries. I said no. I told him the next food he could have was cheerios with milk, and the next drink was going to be water. Dance class is about 12 miles from home. During that drive, he asked for fries at least 20 times, and told me he didn’t want Cheerios another 30 times.
Each time he asked, he heard the same thing: “Next food is Cheerios, next drink is water.” Poor thing wore himself out fighting against these particular goads. By the time he had fallen asleep in the car, then refused to get out, then littered the basement with his coat and shoes, and finally agreed to cereal, there were only a few minutes until his Fine Arts Night at his school.
|Ready to sing!|
|Sees mom and sister in the audience!|
|Enjoying his classmates|
|Happy to be here|
He loved being in the show, and showing his sister and me around his school. Not to mention, the huge number of people who greeted him, clearly delighted to see him. One of the fourth grade teachers last night called dibs on him for fourth grade (two years from now). He brings a lot of joy to a lot of people.
Kepler’s not always happy, but then, neither is anyone else. But we could probably all take a page from his book about rebounding from stuff that upsets us, and let it go completely when we finally accept what is.
I stumbled onto the 2015 Reel Abilities Film Festival, Cincinnati venue, because of a fundraising event for the DSAGC (Down Syndrome Association of Greater Cincinnati). The Cincinnati Reds generously provided the venue for a screening of Where Hope Grows. Even though the fundraiser was in the evening AND downtown, and Greg was out of town, I bought tickets and went to the event, along with about 400 other people.
|The most startled|
In my review of the film, I want to first say, MAD PROPS to the people who make any film. It’s a huge undertaking, and I know this one was no exception.
The synopsis of the film: “A baseball star forced into early retirement struggles to adjust to the curve ball life has thrown him. He finds new life through an unexpected friendship with Produce, a local grocery store clerk who has Down syndrome.”
First important fact. Bad old Johnny (William Zabka), from The Karate Kid (1984), is in this film. He hasn’t learned much, it appears, now drinking his sorrows away and making more bad choices.
Second important fact, David DeSanctis, in his first feature film, does a wonderful job in his role as Produce.
Third important fact, the story contained a number of tropes or cliches. But I acknowledge it must be a challenge to make a film without any.
Fourth important fact, I was not tricked at the part where the plot twist threw us for a curve. But the teenage girl with Down syndrome who was sitting two rows in front of me was devastated and her distress made me cry. She was the reason I want to be positive overall about this film.
As a middle-class, privileged, white person, I have little understanding of what it’s like to be in a minority group who never sees someone like themselves in the media. I loved it that all the young people with Down syndrome in the room saw someone just like them who was living out one of his dreams. David was actually at the premiere and answered questions afterward.
There are upcoming Reel Abilities Film Festivals in cities across the US, including New York and Atlanta. Do consider supporting the RAFF if it comes to your town. What a celebration of hope this film festival is! So many people in the world who are doing the most amazing things, even when they are blind, or deaf, or have some other type of disability. Your support means so much to those with disabilities and their families.
|The ham and cheesiest|
Also, whatever else these corporations may do, I deeply appreciate their corporate sponsorship of the RAFF. Major sponsors included Macy’s, Saul Schottenstein Foundation, Hatton Foundation, Barking Fish, The Cincinnati Enquirer, the city of Cincinnati, and many more.
Here is a list of films shown at the festival. Keep an eye out for them in the future.
I half expected another snow day today, as the skies poured rain yesterday, which eventually turned to snow. As the temperature dropped, it became evident that we would be dealing with both ice and snow today. Sure enough, no school.
I was with some parents recently and one of them gritted her teeth multiple times as she described the power struggles she was in with her daughter (Down syndrome). I felt for her, as I have been there, done that, more than I would have liked. Truthfully, though, I have learned that power struggles pretty much are a losing proposition. Kids just don’t respond positively to parents getting more and more intense, more and more DETERMINED to make the child do this thing, damn it.
So, I’ve had the opportunity to learn some different ways to approach Kepler when it comes to getting him to do something that needs to be done. I realized yesterday that my efforts are paying off. I wondered if they ever would, but he is getting more compliant.
As he has gotten more compliant and I have gotten more relaxed, I have been able to really celebrate his sweet personality, his sense of humor, and his love of doing things together. He patiently waited this morning while I jumped on the rebounder, then joyfully joined in while I washed a few windows. I have much desk work to do today, but he wanted to play a game with me on his iPad, so I said yes. (Important vs Urgent).
He chose Toca Boca Kitchen. You can watch the trailer here. His character decided to cut up a pineapple and eat the entire thing. All of the Toca Boca apps are really cute, and he loves them. While I watched, a light bulb appeared above my head! I have a pineapple in my refrigerator that needs to be cut up.
So, carpe-ing the diem, I invited Kepler to help me cut
up my real pineapple. I’m not even sure if he has even touched a real pineapple before, so we explored it first.
I remembered that the outside of the pineapple represents the fibonacci number sequence, but I just kept that little tidbit to myself.
I am continually amazed at what happens when I get in there and do something new. He used a sharp knife (Cutco, the best!) to cut off the outside of the pineapple. And this little man who eats only the fewest of foods licked his finger of the pineapple juice. He didn’t decide to go ahead and take a bite of the fruit, but any food that gets into his mouth that hasn’t been there before is a huge win in my book.
I would have loved to video the process, but only had enough hands to help guide his hand, and hold the pineapple. His enthusiasm and joy is just so heart-warming, though.
After we did all the cutting, we ended up with this:
Delegate: entrust (a task or responsibility) to another “person,” typically one who is less senior than oneself.
I’m a big fan of animated films, and have been known to be moved to tears in more than one that I’ve seen. I love the clever dialogue, and the colorful visuals. It must be a lot of fun to work on such a project. One of my favorites in recent years is Big Hero 6.
Big Hero 6 was the first movie we took Kepler to see at the theater and he loved it. I loved the movie, but loved even more watching his whole-body response to the movie. He laughed, he cheered, he stood up and danced. We went to see it a second time!
Baymax has got to be one of my favorite characters ever. He is a “nurse bot,” and has the capacity to diagnose and treat humans. His halting, gentle voice is always soothing. And he is bound and determined to heal whatever it is that is bothering his human patients.
For Kepler’s birthday, we bought him a 19″ plush Baymax. Baymax’s arms swivel, so he can be very demonstrative, with the right puppeteer in charge.
After the puberty workshop I attended last week, I was newly inspired to do everything I can to help Kepler be as independent as possible.
Getting on the bus in the morning has been challenging in the past. He hasn’t wanted to put on his socks, refused his shoes, couldn’t find his mittens, and so on. More than once I had a bucking bronco on my hands. We have made a lot of progress in being more organized and utilizing the most excellent Time Timer to have a smoother morning, but I had been resigned to putting on his shoes and socks, pretty much forever, myself, until last Tuesday morning when I had Baymax tell Kepler it was time to put on his socks.
“Kepler… Please put on … your socks.” I placed Baymax in front of my face and he spoke to Kepler, and Kepler listened. Kepler put on his own socks.
Eureka! I realized I had a solid gold parenting tip right here. Since then, Kepler has listened to Baymax many times and he has obeyed. Not only that, but he LOVES it when Baymax hands him his socks, gives him a fist bump, waves to him from the dining room window as he leaves on the bus, tells him to hang up his coat, and reminds him to wash his hands.
I believe that Mary Poppins was right when she sang about a spoonful of sugar helping the medicine go down. Baymax is the sweetest spoonful of sugar, and turns all the medicine into empowering fun. Baymax for the win!
Which Disney character might your sweet little one respond happily to?
I have this secret thing that I do at every movie. I scour the credits for my first, middle, and last names. I like to find my names in the credits of movies that are uplifting or encouraging or somehow speak to the best version of me.
When necessary, I even allow variations of my first name, like Sue or Suzanne. When I find my names, this is some sort of confirmation to me that the message of the movie applies to me. In movies about relationships, I also look for my husband’s name.
Tonight, we went to see “Still Alice.” I had read the book a few years ago, and as I do with most novels, had forgotten every last detail, but had a general impression of the book having been really good.
At this end of this beautiful film, I did my secret credits thing. One of the first non-cast credits was someone named Susan something. Susan was in the credits FOUR times (highly unusual). My middle and last names were also in the credits more than once. Plus my husband’s name was in there, too!
The message I took away from the movie was LOVE. Love of family, love between a man and woman, love of life, love between children and parents, sacrificial love.
One of the realities of living with Down syndrome is that early-onset Alzheimer’s (the subject of “Still Alice”) is quite a bit higher in persons who have Ds. I haven’t wanted to think about this. After all, Kepler is only 9, and he is as bright as the sun, and while cognitively slow in some ways, the thought of him losing himself is a thought I cannot allow myself to have right now. All we have is the present. Not everyone with Ds develops it, even if they have the higher levels of beta-amylase that are present in the brains of those with early-onset Alzheimer’s.
The message of “Still Alice” to me was to LOVE now. Love today. Love in every way I can. Receive all the love that is given to me. Love the now.
Come on, Kepler, let’s make pancakes!
He presses his little hands together in excitement, and has a look of absolute glee on his face.
I get the step stool for him and he looks on with enthusiasm as I pull out the milk, eggs, wheat germ, flour, applesauce, and baking powder.
In my newfound enthusiasm for all things experiential education, I involve him as much as I can. Pancakes were made, but my favorite part of the process was when I was showing him how to crack an egg.
I tapped my egg gently on the stove and showed him the tiny dent in the side. He TAPPED his egg NOT gently on the stove and kinda broke it. It was still relatively intact, but some of the egg white came out and TOUCHED him.
“GWOSS,” he yelled and flung it on the stove.
What do they say about embracing life? It can be messy?
Some of that wintry, white, unwelcome stuff fell from the sky yesterday. A snow day for today was called last evening. We all rejoiced.
Most of my friends around here posted pictures of themselves and their children SLED-RIDING, as if that is fun or something? Been a long time since that sounded like fun. OK, Kepler
would probably might like it, after we got him clad in snow pants (must buy), boots (must buy first), waterproof mittens (on the list to buy after the boots), a hat, a scarf, insulated long underwear, electric hand warmers, lotion for his face, a warmer coat, wool socks (must BUY), polypropylene liners, plastic bags to futilely try to keep his feet warm, something extra for his ears, and a thermos of coffee and one of brandy. You just KNOW after working for two hours to get him outside, he’d be ready to come back in in 3.5 minutes. Ain’t NOBODY got time for that.
So, sled-riding is not the first order of business on my mind. Instead, today we went to the Krohn Conservatory, where they were having the Falling Water Gardens display. Based on the designs of Frank Lloyd Wright, it sounded like something we would love to see.
THIS was the kind of day I was imagining when I wrote my blog about homeschooling. The smell of the dirt, the humidity in the air, the colors of the flowers, the textures of the cacti, the motion of the waterfall, Kepler running, absorbing, smelling the fragrances, touching something real. Making the kind of memories that last. Didn’t have to homeschool to make it happen; just needed a snow day.
|Dear daughter wanted to stay there permanently.|
|Orchids are magic.|
|Actual flowers I took an actual photograph of.|
Exploring the question of homeschooling Kepler is not something I have considered for more than ten minutes his entire school career, which began two days after he turned three years old. His teams at school have always been filled with loving, experienced, knowledgeable professionals. Why would I even consider this? Because I am, that’s why.
As with most kids with Down syndrome, he is delayed in many ways. The gap between the typical kids and Kepler just gets wider and wider every day. I have great confidence in his team to help him reach his IEP goals, and indeed they are, but there continues to be this nagging question for me of what he and I might accomplish together at home.
First, I think of the field trips we might do. Going to the aquarium time and time again, touching the animals in the touching pool, learning about what we see. Visiting the zoo with books about elephants and giraffes and zebras and penguins and reading the books right in front of those animals. Going to the park and exploring. Climbing, wading, running, walking, examining, looking, learning.
I think of trips to the forty-one branches of the public library, where every branch is chockers with books and puzzles, librarians, time to browse and explore and learn.
I imagine trips to the grocery store, Whole Foods, hardware stores, hat stores, toy stores, antique shops.
Museums. Art museums. The Natural History museum. The Children’s Museum.
Lessons. Art, music, martial arts, drama, dance.
Sports. Swimming, baseball, Special Olympics, tennis, ice skating.
And the academics themselves. Creating collages, reading, spelling, writing, learning to add and subtract, fractions by cooking, games upon games upon games. And no school calendar to work around!
Yet, I imagine that the school system can give him way more than I can. That they are equipped in a way that I am not. That the socialization he gets there outweighs the benefits he might get at home.
Most days, I can’t wait for that school bus to arrive and transport him to school. Yesterday, the bus didn’t come, since it was Presidents Day. Having been sick last week slowed me wa-a-a-a-ay down, enough to be willing to say yes to Kepler when he asked me to play some games with him. The child is delightful. He is hilarious. He is playful. He’s engaging and engaged. I have more educational resources than some third world villages.
I wonder what it would be like to actually dive into parenting him by assuming the role of educating him. What would it be like to take responsibility for that portion of his life? Well, apparently, I have a lot of ideas.
What if he could learn at home, but go to school most days for recess and specials? How would I ever get breaks? What if I’m really equipped to teach him what he needs to know to become independent? What if he never becomes independent? What might the two of us experience together that bonds us even closer? What would he miss? What would he gain? What if I tried it without being attached to a particular outcome? What if I failed? What if I succeeded?
When I homeschooled the big kids, I was doing FOUR grades at once. And I thought I had to do and be everything to and for each kid. Turns out, I gave them some amazing stuff. Turns out, I missed some big things. Although, my experience homeschooling the big kids doesn’t have to really be related much at all to homeschooling Kepler, if I were to try it.
The biggest challenge I imagine is being isolated. I already am pretty isolated, and that suits me pretty well most of the time. But I do get lonely and I would like to be more connected to people. What if homeschooling him actually led to more connection and less isolation?
One of the reasons I worked so hard to get well this week is because Kepler’s dance competition was today. He had a Christmas concert in December, this competition today, and then there will be a final recital in May. It’s not like we could really miss any of them.
JamFest National Competition was today. Kepler’s dance troupe is called The Star Performance Superstars. There are about 24 dancers from the tiniest girls and boys to young women in their early 20’s. All of the Superstars have some type of developmental delay or disability. Every Superstar dancer has a dance mentor who works with him or her on and off stage. Kepler’s mentor is a wonderful young woman called Kelsey. Here’s the photo journal of Kepler’s experience today.
|note the red shoelaces!|
|a total Valentine’s surprise for all the dancers|
|as Kepler would say, “APPISE!”|
|enjoying himself wherever he is|
|the big move: “Lift and spin Kepler”|
|jamming to the beat|
|excited to see Mom!|
|Look at my medal, Mom!|
|Espies sister and gives her a big smile|
|I’ll see you again soon, fans.|
|Proud of his work and his award.|