Ready to Go, But Not Ready to Stop

A Parent’s thoughts at the end of CLC Summer Camp

Bryce, 4 years old, spent his first session at Conductive Learning Center (CLC) in this year’s Summer Camp program. Bryce was born 4 months premature, at home, where his parents gave him CPR until emergency responders arrived. Starting life a mere 1 1/2 pounds and 12 inches long, Bryce spent his first 5 months fighting for his life in the Neonatal ICU.

His mother, Katrina, wrote the following in her blog at the end of his summer camp experience at CLC.

“I know I should be overwhelmingly happy to be going home, to be getting back to normal and to be sleeping in my own bed again. And I am – but the truth is, it’s bittersweet. I do miss home but I’ve seen the other side, the vast potential that is Bryce, and it’s utterly addicting.

Bryce has been in therapy a minimum of three times per week for the last three and a half years, since he was six months old and just one month out of the NICU. I believed fully that we were doing everything we could for him, that we were giving him every possible opportunity and that the progress we were seeing was his full potential for change.

I have to admit that while I was hopeful, I was also weary. I came here with an open heart and a questioning mind. Years of enduring therapy visits and specialist appointments had conditioned me for bad news and little progress.

Y’all – it was so much more than I could have ever hoped for, so much.

Sure, I would have loved for Bryce to have come home walking independently but that simply wasn’t realistic. However, I witnessed full blown, absolutely independent steps. FOUR of them! I have seen him make full-scale, across-the-board progress that makes his prior progress seem just silly.

I’ll admit that I was skeptical when I first heard about the CLC program. I was raised to question everything. But this place (CLC) is the real deal. I’ve personally witnessed subtle, consistent changes in Bryce including:

  •  Increased walking endurance
  •  A longer attention span
  •  Putting hands in front of his face to brace against falling (this is epic  and will save us more ER visits for split chins!)
  •  More consistent use of right hand and use of BOTH hands together (unless this is a problem you battle, you can’t begin to understand how much it changes everything about your day and daily routine)
  •  Longer periods of stable, independent standing
  •  More often standing up from the ground completely independently
  •  Vastly increased vocalizations
  •  Much, much more intentional “communication” coupled with an eagerness to communicate we’ve never before been privy to
  •  More social independence
  •  And more!

Seeing Bryce have the opportunity to exceed his own, and our, perceived limitations, interact with peers and be in a group of children with similar challenges has been life altering. The way he lights up when we run into another child from the CLC almost makes up for the 10 extra minutes that means it will take to reach our destination by letting Bryce get there on his own.

The conductors here have this perfect balance of stern direction and loving affection that results in optimum performance. If it were an option, I would take them home. Unfortunately, that isn’t an option and so now I begrudgingly prepare for our return home while trying earnestly to figure out how to continue this forward motion and get back to CLC as soon as possible.

The simple fact is that every step of progress, every milestone before CLC came so slowly that it was hard to even celebrate. Bryce didn’t roll over until after his first birthday, he sat up independently just before his 2nd birthday and only began walking with a walker at 2 1/2 years of age.

His progress in five weeks of camp has been incredible and, as I’ve said to people here many times over the last week or so, I’m ready to home but I not ready to stop. And so to home we go, with a heavy heart and hopeful eye. Thanks CLC!”

Did you like this? Share it:

Enjoying the Laughter — Even Through Tears

By Kimi Baker

In life, there are certain things you take for granted — at least I always have. Like the sun rising in the morning and setting at night. And Michigan’s weather being unpredictable. Most importantly, I’ve always counted on big smiles and big hugs from my parents when I walk through the door.

But since my dad was diagnosed with Younger-Onset Alzheimer’s disease a few years ago, the guarantee of big smiles and hugs when I walked in the door didn’t exist anymore. Because one day — and there was no telling when it would be — Dad wouldn’t know me any better than a stranger walking in off the street.

Well, that day finally came not too long ago. While I did get my big hug, smile and “I love you” when I returned home for a visit, the next morning my dad didn’t know who I was.

I was sitting at the table next to my husband, Bobby, eating breakfast when I heard my dad’s whisper — which is more of a stage whisper than an actual whisper. “Who is that?” he asked my mom.

My mom, trying in vain to keep me from hearing the conversation, was whispering back. Dad, of course, couldn’t hear her. And the response “that’s Kimi” rang loud and clear in the silence of a house not yet fully awake. The rest of the conversation? Went a little like this:

Mom: That’s Kimi.
Dad: Oh! She looks like someone else.
Me, trying to bring a little levity to the situation: I hope like someone pretty.
Dad: No.

And we all laughed.

You see, I could let my tears flow because my dad didn’t recognize me. And I’d be perfectly within my right to do so. I also could be hurt by him saying I don’t look like someone pretty. Instead, I smiled. And I laughed when he did — along with my mom and my husband. Because it’s uncomfortable. But, let’s be honest, it’s also a little funny. Besides, Dad can’t help it because it’s the nature of this horrible disease.

Don’t think that because we laughed the seriousness of the situation passed us by. Because it didn’t — I definitely had to fight back some tears. And, let me assure you of this: when your dad doesn’t know who you are, a piece of you breaks. And I don’t think it ever fixes itself. Because, even though he might know you the next time he sees you, there always will be that first time he didn’t recognize your face. Plus, you’ll always know it will happen more often as the disease continues to claim more and more of his brain.

But crying in front of him, as it’s happening, does nothing other than make him feel bad — and turn my face all blotchy. Those tears? They’re saved for the shower or the drive home.

So we laughed. Because there aren’t many joyful moments. There is a lot of sadness and worry, anger and fear. So when those silly moments happen with my dad, I embrace them. Even if it means laughing at my own expense.

This is Kimi’s second year as a member of the Fifth Third River Bank Run ALZ Stars team. To learn more about our ALZ Stars program and other runners like Kimi or to donate, visit our team page at act.alz.org/53RBR! Together we can move a little closer to stopping Alzheimer’s in its tracks.

Did you like this? Share it:

Running Towards Social Media.

In all ads and commercial these days, slogans and tag lines are connected to social media.

Examples of this are found in ads for Martha White baking mixes, sold by J.M. Smucker, carrying headlines that include “Finally, something worthy of a status update” and “Double your ‘friend’ list in just 15 minutes.”

The hottest trend is to be apart of a social media site. If you know the ins and outs of a social media site, it’s like being a part of a club. Those who are dumbfounded and uneducated when it comes to inter

Why is this? It’s relatable and easy to understand. Once someone mentions something that you are familiar with you are instantly connected to them. Then, they’ve got ‘cha.

 

http://about.bloomberglaw.com/practitioner-contributions/2013-%E2%80%93-social-media-and-advertising-what-is-on-the-horizon-by-liisa-thomas/

Did you like this? Share it:

Congratulations!

What a weekend!  We saw many familiar faces this year at the Fifth Third River Bank Run  and met some new friends as well.  The team pulled together and ran a great race with several picking up personal records!  The rain held off and the temperature stayed cool, creating the perfect backdrop for our participants.  Plus, our small but dedicated team raised $2,000 for the fight against multiple sclerosis… and we’re still counting!  Well done and congratulations to all!

It’s events such as these that continue to be the driving force of change for those living with multiple sclerosis every day.  In March, the FDA approved the tenth disease-modifying treatment for relapsing MS, a twice a day oral medication named Tecfidera.  This first-line defense therapy showed huge promise in clinical trials with significant reductions in MS relapses, disease activity in MRI scans, and disease progression.  Also this year, researchers and clinicians from around the globe gathered together to discuss key challenges and strategies relating to progressive forms of multiple sclerosis.  This International Progressive MS Collaborative was formed by the U.S. National Multiple Sclerosis Society and its counterparts in Canada, Italy, the United Kingdom, and the Netherlands.  The goal of the two-day summit was to identify priorities and formulate a road map for battling Progressive MS.  This is exciting news and our runners’ hard work and dedication makes these strides forward possible!

Overall, we continue to be humbled and thrilled to be part of a larger group of incredible charities all working together to make positive change in West Michigan and beyond.  The Alzheimer’s Association, Make-A-Wish, the American Cancer Society, Paws for a Cause, Home Repair Services, the United Way, Rays of Hope International… what an incredible group of passionate individuals!  We look forward to an even deeper collaboration in 2014 as we return to our third year as a charity partner for the 37th annual River Bank Run.  A round of applause for our participants, donors, sponsors, supporters, and (of course) Fifth Third Bank… we can’t do what we do without you!

Until next year…

Did you like this? Share it:

Alzheimer’s Association Will Bring Mini Promise Garden to Expo

Alzheimer’s not only affects the person with the disease, but the lives of entire families are altered with a diagnosis.  Each person connected to someone with Alzheimer’s has his or her own personal story. Our signature Promise Garden is made up of beautiful flowers representing these different stories.

The Alzheimer’s Association would like to invite any Fifth Third River Bank Run participant to stop by our booth at the Expo and pick up your own Promise Flower.   You may choose to write messages of hope, honor, or remembrance on your flower.  Then you can either take the flower home to display in your own garden, or leave it with us to plant with the others at the 2013 Walk to End Alzheimer’s.

Together, the Promise Flowers create a dynamic, colorful and meaningful garden. On race day, keep an eye out for a wonderful garden of the Promise Flowers along the race route.  It is our hope that they are an inspiration to all the participants.

Our finish line is a world without Alzheimer’s.  Best of success on Saturday!

 

 

 

 

Did you like this? Share it:

Happy Race Week!

All of us from Access of West Michigan hope you have a wonderful week leading up to Race Day. You’ve almost made it to your goal of running in the Fifth Third River Bank Run, and we couldn’t be prouder of you.

Thank to all those runners & walkers who raised funds for the Charity Partners as they trained. As non-profits, our work would not be possible without the faithful support from people like you. So THANK YOU!

Best of luck in the race, and we will see you on Saturday!

Did you like this? Share it:

Rays of Hope – Charity Partners for the River Bank Run

Rays of Hope is proud to announce a charity partnership with the 2013 Fifth Third River Bank Run! This is a fantastic opportunity to raise money for the people of Haiti while participating in a fun community event in downtown Grand Rapids.

Rays of Hope International supports projects that encourage self-sustainability thus helping to break the cycle of poverty within the communities served. In addition to shipping containers filled with food, clothing, shelter supplies, water filters, shoes, medical supplies, and hygiene products, Rays of Hope also provides disaster relief, humanitarian aid and partners with West Michigan organizations to help integrate refugees into our community. Rays of Hope has also been able to provide medical supplies to people in the other countries including Central & South America, Africa and Asia.

Did you like this? Share it:

Why I’m Running for Bethany’s One Family Campaign.

Three of my friends and I have faithfully gathered once a week for the past 16 years to do our “long” run together, all while debating and solving issues of politics, faith, family, food, and sports. I love the community we’ve developed—the hope, healing, and support we’ve received and the mental and physical fitness that has been a great by-product of our time together.

We’ve also trained for three marathons and several Fifth Third River Bank Runs, and this year we have joined the Bethany One Family campaign team for the River Bank Run coming up in May. I’ve run the event for several years and have enjoyed the challenge of pushing myself beyond the distance I typically run and gathering with a dynamic, eclectic community of runners. But this year the One Family campaign makes so much sense on a variety of levels….. Read the rest of Pete Knibbe’s story on our Bethany blog.

Did you like this? Share it:

Gearing up for the Hunger Walk

It is a busy week for us at Access of West Michigan as we make final preparations for the 36th Annual Hunger Walk on Saturday!  We are planning to see 1,000 walkers and volunteers join us for this 5k walk which raises funds and awareness for 24 hunger-fighting organizations.

This year’s exciting theme is “Be a hero. Fight hunger,” which encourages all to join in the fight against hunger in our community and around the world.  All are encouraged to come dressed as their favorite super hero, cape and all!

We’d love for you to join us in this wonderful community event. The walk starts downtown at 207 E Fulton (First United Methodist Church) at 8:30am.  We hope to see you there!

Did you like this? Share it:

CLC Student Dakota, age 7 and his Mother, Angel, are training to run for Team CLC

Dakota has been attending Conductive Learning Center (CLC) since he was 2 years old. He was diagnosed with cerebral palsy as a baby. Since he has been enrolled at CLC he has made steady and remarkable progress. Dakota is training to use skills he has achieved through the program at CLC to complete the half-mile fun run at the Fifth Third Junior on May 8th. At CLC, children with motor disorders like cerebral palsy, spina bifida and brain or spine injuries are taught to approach each and every day the same way that a runner approaches a big race – set goals, train, strengthen and condition their bodies to become reliable rather than reliant- training is natural for Dakota!

Angel, Dakota’s Mom, joined Team CLC, to train and challenge herself just as Dakota has been training and challenging himself since he entered the program at CLC. Her goal is to complete a 10K run and to raise funds so that more children with motor disorders can be helped by the CLC program, like her son, Dakota.

Angel reports, “The Conductive Learning Center has changed our family’s life in amazing ways. Since starting at the CLC Dakota has learned to stand up, walk with a walker and even without a walker, (he took 111 steps on his own last week) as well as get himself dressed with minimal help. He is showing much improvement in his feeding skills and speech too. Thanks to CLC Dakota is a strong, independent boy!”

We all know there are many children in West Michigan that are struggling with motor disabilities but don’t know where to turn for help. The Conductive Learning Center’s, Team CLC is a group of over 100 individuals who are collecting financial pledges and creating awareness for CLC while training to run or walk in the Fifth Third River Bank Run 25K, 10K, and 5K events. The money raised by Team CLC will be used to fund CLC’s Champion a Child Scholarship program, enabling more children with motor disorders to “learn their way to independence” at CLC.

Run, Dakota, Run! Go Angel!

To join Angel and Dakota and run/walk for Team CLC, send your name to info@conductivelearningcenter.org

Did you like this? Share it: