Category Archives: Downsyndrome

Let’s Make Beautiful Music Together

Downsyndrome, Life with Kepler, The Joy in the Journey

A couple days ago, I told you about Melodic Connections, a non-profit organization that provides opportunities for people with special needs to make music together. Today, I had the opportunity to help them as they re-code the new instruments they have received. Look closely at the guitar Tommy is playing here:

tommy

They have a color-coded system for the guitars and keyboards. I didn’t know exactly what to expect when I arrived today, but I most certainly did not expect to receive the gift of participants sitting there playing and singing. I wish I had taken a snippet of video so you could see the joy as they played and sang.

One of the Melodic Connections therapists was playing the piano, and another was playing the drums, so there was a clear melody and rhythm underlying the entire piece. I just got so excited while I was there. I love making music; I love this population; and I love helping people. Maybe there is a place for me to be a part of this program beyond dropping Kepler off and picking him up after class!

img_7129
I helped put these color-coded keyboards and guitars back into boxes as temporary storage until new accommodations are found.

I am just learning about this organization, even though I have been seeing advertisements for it for the past 8 years, and I am really enthusiastic about their mission and vision and what they are accomplishing.

They are now looking for a new space for their studios and offices. I guess their old building was completely ruined when it flooded. They also lost all of their office equipment, computers, copy machines, etc. Can you imagine? What would it be like if I walked into my family room and it had flooded, taking with it all the electronics in here? We would lose at least two computers, multiple pieces of the tv and sound system set-up, lamps, furniture, my grandmother’s antique china cabinet, files, records. And a whole lot more.

About a million years ago, Greg and I went to a Michael Card concert at Moody Bible Institute in Chicago and heard a song that has always stuck with me. I’m sure I have even written about it before. The concert was later played on the radio, so I was able to record it. I do not believe I have the cassette anymore, but I about wore it out back then. The idea of the song was that there are needs within my reach, and others that are not. The ones within my reach are the ones I can do something about.

Melodic Connections is within my reach. Although I cannot fix everything, I can do the part of one person, and share my vision with others. On their website, they have listed some of the things that they still need. You can be a part of the rebuilding of this excellent organization! Thanks for considering how you can help!

Thanks for reading!

Compassion and Children

acceptance, atozchallenge, children, compassion, Downsyndrome, Kepler

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

Bob and Ina were a middle-aged childless couple living in our small Kentucky town after being missionaries in a land across a sea. They were building a home where they would spend their retirement. On the day we were to go over to ooh and ahh about the place, before we left, Bob grumpily told me to make sure I kept the kids’ grimy hands off their freshly painted walls.

Oh, I was indignant. AS IF. Anxious as I was back then about any signs of imperfection, I spent the entire walk-through tensely replacing curious childlike arms at sides lest they mar the precious walls.

Still striding purposefully forth as a young mum, I’d take walks with a baby strapped in the Bjorn carrier on my front, a toddler in the Tough Traveler backpack on my back, and a slightly larger toddler in the umbrella stroller. With all my energy consumed by carrying the weight of their world on my body, we walked and I taught them everything I could think of, everything we saw.

When my baby number four came along, I shifted from carrying the physical weight to carrying the emotional, spiritual, and intellectual weight. We had sent Valerie to kindergarten that fall because baby was due in late October and even I knew it might be a bit much to homeschool three (ages 5,4,and 3) with a baby on my hip.

Once kindergarten had concluded, I had my vim and vigor back and embarked on the formal process of educating our kids. Thinking that my kids were uniquely unique in their uniqueness and pretty much the top kids ever born on this small blue dot of God’s green earth, we spelled and sang and memorized and walked and drew and added and read our way through the years.

The bombshell of our later-in-life baby who brought Down syndrome into our world threw me for the looped-de-est loop that ever sideswiped a mama bear. And I reeled for years, trying to continue to carry the weight of the world on my shoulders.

Finally, finally, I learned to embrace the whole kit and kaboodle, the mess and inefficiency and snail-like pace of these bright, quick, beautiful, sentient beings.

Last night, as I set out to floss my teeth (take note, dentist person!), my special floss threaders for my lingual bar retainer were not where I had left them. Immediately, I suspected knew that Kepler was responsible for this reorganization, but he was asleep so no asky keppie tilly morning.

Years ago, I would have raged, furious that I couldn’t leave a small item out on the counter and know it would be there next time I needed it. By now, though, I simply put my Kepler thinking cap on, and remembered that he likes to put miscellaneous items down the laundry chute.

I checked. No flosser threaders, but I found two barrettes that had been next to the f.t.’s and grew suspicious. Little Keppie has occasionally flushed a thing or two before.

Throughout, I was calm, open to what lesson I might be having the chance to learn, and accepting the change in plans that is part and parcel of children in our lives. The compassion section of my heart has had room to grow as the controlling section has faded.

Although not everyone gets to or wants to say yes to the chaos of children, ours have been part of my journey to acceptance, which, by the way, I’m still on.

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

He’s Always Happy, Isn’t He?

#gratitude, Downsyndrome, Kepler, parenting

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.

The Best Reason I Know of that You Might Want to Support the Reel Abilities Film Festival

#ReelAbilitiesFilmFestival, #WhereHopeGrows, Downsyndrome, Kepler
The coolest

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 proudest

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.

The cutest

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.

Little World
The Crash Reel
Fixed: The Science/Fiction of Human Enhancement
Touch of the Light
Here One Day
Stand Clear of the Closing Doors
Habana Muda
Come as You Are
Travis: A Soldier’s Story
It’s All About Friends
Where Hope Grows
The Commute
Bipolarized
Here One Day
Sampler’s Ascent

Finding the Best Version of Me

#alzheimers, #credits, #stillalice, #susan, #valerie, Downsyndrome, Kepler

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.

Do it. Love the now. 

The peace of accepting what is

#trust, #yes, Downsyndrome

I have felt the resistance of the canoe paddle slicing through water a time or two. Sometimes I’ve even steered, j-stroking, dragging the paddle to turn, switching sides. The idea is to work with the river, with its currents and eddies and shallow bits and white water stretches. To get down river without capsizing, you must be attentive, flexible and aware of what’s ahead.

Many days when I “paddle my canoe” through life, I fuss about every little change in depth, unexpected rock, and swift current I’m not ready for, and I’m tense and worried

My 9yo son, born with Down syndrome, is very often the source of new and unexpected turns in the river. I feel like I can never be prepared enough when I’m on the river with him.

When I slow down long enough to ponder this, I love to imagine myself slipping into the water, buoyant and relaxed, as I trust the river to guide me. I have the choice to believe this is an option.

When my son and I drive somewhere, he often wants me to “Wook, Mom!” He simply does not understand how there could be any reason I can’t look back at him while I’m driving. I get frustrated when I sit rigidly in my “canoe” and wish wish wish he would stop asking me to look.

But to really embrace what is, I allow the river, and Kepler, to be what they are. I trust that his repeated asking for my attention is somehow the best thing that could happen to me. Saying yes to the fact of the asking ignites my creativity, and opens new doors of possibility. The genuine acceptance of his entreaties coexists with me slipping into that river, buoyant and relaxed, trusting.

What do you face in your life that you could begin to say yes to?