My daughter in search of her voice

(With advice from wikiHow on “How to Interact With People Who Have Disabilities”)

Be respectful, above all else. Someone who has a disability should be afforded the same amount of respect as anyone else. View others as people, not impairments.

My daughter is short. She’s an adult but looks younger than her years. She speaks softly, especially in situations where she lacks confidence, situations that include walking up to a reception desk that comes nearly to her chest and talking through a window with someone she doesn’t know who is seated on the other side. And on that other side, many people sit at many computers among lots of files and equipment. For some, it is an intimidating window.

She is excited about why she is here. She is picking up an item she ordered weeks ago – something she selected and paid for herself. This is a friendly place, one where people have treated her well in the past. It’s not a busy, loud, big-box store with lots of people standing in line. It’s calm and quiet. We are the only ones approaching the desk, and so I don’t think twice – well, maybe twice but certainly not thrice – about encouraging her to go to the desk as I stand back in support.

She states why she is here, but maybe she isn’t loud enough, or maybe she doesn’t state with enough detail the task at hand. She gets nervous and hesitant to talk in public because so often people can’t hear or understand her. Yet she keeps trying. She makes a good effort this day, but the person behind the window doesn’t hear her.

Use a regular speaking voice and vocabulary and talk to her just like you would talk to someone without a disability.

I feel a familiar sinking in my being that comes from watching my daughter try to talk with someone and, once again, not being heard. Often my daughter looks to me for help. But not this time.

The person behind the window asks her to speak up. My daughter again states her business; she never appears bothered by having to repeat herself. The person behind the window rises to get closer. She raises her voice. She talks while my daughter is talking. Then she looks at me.

Speak directly to the person, not to an aide or translator. It’s frustrating for someone with a disability to have to deal with people never talking directly to her if she has an assistant or a translator present.

“Are you with her?” the receptionist asks me.

Whether I’m with her or not, where I’m standing should tell the receptionist all she needs to know. The question itself screams at me, accusing me of making the receptionist’s life difficult, of somehow inconveniencing her.

“Yes.”

That’s all I’m willing to offer directly to this woman. I look away from her and focus on my daughter with gentle prompts about what to say. I realize this is a way of speaking for her, and it hurts me. I realize also that I am sending a message to the receptionist: talk with my daughter, not with me.

Be patient and ask questions, if necessary. … Always let her speak and work at her own pace, without you egging her to talk, think, or move faster.

It’s not that I don’t want to help. I do, in fact, want to help. But my daughter doesn’t need my help. She is perfectly capable of communicating why she is there. She just needs the person on the other end of the conversation to slow down, listen and ask the right questions.

Once the receptionist understands my daughter’s mission, she asks her name. My daughter says her first name loudly. With my prompting, she also offers her last name. But the receptionist isn’t listening. For a moment, I think she is considering whether it’s worth the trouble to ask for the last name.

Again my daughter says her last name and this time communicates it successfully. We are told to sit in the waiting room until called.

As my daughter sits down next to me, I feel a sense of relief emanate from her. She offers something else:

“My ears were filled up,” she says, trying to explain away the difficulty she had at the desk. I can’t be sure of her meaning, but I equate it to the full-headed feeling I get when dealing with overwhelming stress. I’m sorry that she feels the need to say this.

Back at home I’m in a mood and get exasperated when I find that my husband plans to grill chicken and hamburgers for dinner. What is he thinking? But I settle down and sort my emotions. I tell him about the receptionist, that she made me feel like we were an inconvenience at least and a downright nuisance at the most.

I try, too, to put myself in the receptionist’s shoes. I wonder whether she was having a bad day herself, whether she was frustrated with something in her life that affected how she dealt with us. Similar to how I dealt with my husband?

And the world goes ‘round and I am left with this last bit of advice from the same article in the wise and surprising wikiHow:

A good habit to be in is to act kindly and considerately towards everyone; you can’t know someone’s situation by just looking at her.

 

A special book

Uplifting memoir tells of Special Olympics’ founding and impact

My writing needs to become a lot more casual if I actually want to post anything on this blog while getting ready to move to a new house. There’s so much I want to write about that we’ve had the privilege of participating in these past few months, and in my mind, I find the time to craft beautiful essays about our experiences. In reality, that is not happening. So I will play catch up in the coming weeks and likely write a bit more loosely than usual.

Today, though, I want to tell you about a book I’m reading. Special Olympics has made a huge impact on our lives, and in looking for ways to write about that, I came upon a memoir called Fully Alive: Discovering What Matters Most by Timothy Shriver. Shriver, Special Olympics chairman, is the son of Eunice Kennedy Shriver, Special Olympics founder. I’m only on page 24, and already I’m in love with the book’s intellect and heart.

Shriver writes about his life with his family, his mother’s advocacy for people with intellectual disabilities, and his aunt Rosemary Kennedy, whose life with intellectual disabilities profoundly affected and inspired the family.

Of his aunt, he writes:

“In her own way, she may have had the most influence of any member of my family, because her message was by far the most radical: she was the only person I ever met who didn’t need to do anything to prove that she mattered. In the midst of an enormously competitive family system, Rosemary Kennedy lived a full life to the age of eighty-six without ever giving a speech, writing a book, holding a job, or garnering the praise of the mighty. Despite failing to meet any of the expectations that were imposed on the rest of us, she belonged. … Her presence changed everything.”

In the summer of 1962, in Shriver’s backyard, his mother started Camp Shriver, a place for children with intellectual disabilities to play games and have fun, a place with an array of activities that “made my backyard into a virtual amusement park,” Shriver writes. The camp was born after Eunice Shriver had already devoted years to inquiry and advocacy in the area of intellectual disability. Frustrated and angry by the suffering she saw, she acted.

“She was determined to prove to others a lesson Rosemary had proved to her years before, a lesson that remains shocking in its simplicity and shocking in its continuing persistent disregard: people with intellectual disabilities are human beings, deserving of love, opportunity, and acceptance just as they are.”

I’m so glad to have found this beautiful book, which was first published in 2014. I look forward to the further treasures I expect to unearth in its pages. I’ll keep you posted.

Photo by Zach Mimms

 

A drop in the river

After nearly nine years, a diagnosis changes lives

While working at my home computer one late spring morning, I heard the muffled sound of water running. Any parent knows that when this sound doesn’t stop, a mess usually follows. The sound wasn’t stopping.

I had left my 9-year-old daughter in the family room listening to music. My boys – ages 15 and 13 – were in the basement with a friend. My bet was on the boys. So I hopped down the steps to check on them. They were glued to video games, nowhere near water of any kind.

Back up the steps I went and there noticed water splashed across the kitchen window. Had it started to rain? I leaned out the back door to check. No rain. Just my daughter on the patio with the garden hose.

Wait. What?

How had Anna slipped outside without my hearing the storm door slam? She was in her pajamas, pointing the hose toward the sky, flinging water back and forth with sheer joy on her face. The dog – fine protector that he was – was pretty happy too, sopping and loping around the yard. Spread on the concrete was a set of books.

“What are you doing?” I asked after springing down the deck steps toward her.

“I’m cleaning the house!” The words came happily from her beaming face.

Well, of course you are. And the books? Yep. She was cleaning those too.

I’m reminded here of those commercials for household cleaners. You know the ones: The children streak goo across immaculate kitchens and the moms just smile and get out their paper towels or spray cleaners or whatever the pitched product happens to be and clear the mess in no time. I’ve often wondered why the moms never scream, “This is the fifth time today I’ve had to clean up after you!”

That day I was a commercial mom. I stayed calm and smiled and actually found amusement in the whole episode. I didn’t have a handy product to promptly dry the dog and the books, not to mention the girl, who tends to have seizures when she gets chilled. But I did have a reason to be more accepting of the situation.

Just a little more than a week before, I sat in a neurologist’s office at Cincinnati Children’s Hospital Medical Center where Anna’s doctor reviewed test results with me. He explained that a spontaneous genetic mutation was the cause of the uncontrolled seizures she had suffered since she was 11 months old. The results pointed to Dravet syndrome, a life-threatening, rare and severe epilepsy that often resists medication and impairs cognition, physical abilities and behavior.

I was stunned.

While I had just received the news and couldn’t fully understand its implications, I did understand that after almost nine years of seizures and medicines and hospitalizations, after the ketogenic diet and the vagal nerve stimulator and brain surgery, after years of uncertainty and unpredictability and more questions than answers, we had a diagnosis. I don’t generally cry in front of medical professionals, but I found myself blinking away tears.

“I’m sorry. Is this sad news?” her neurologist asked me.

“No.” I said. “It’s just that … ” Words spun in my head.

“It’s just that it’s been so long,” he said. “And you didn’t do anything wrong.”

“Yes!”

It wasn’t a good diagnosis, to say the least. But I had known for a long time that Anna’s medical condition was, in fact, devastating. Now it had a name. That name was a drop of water in the river of our lives; it sent ripples out in all directions.

With that name came a sense of relief from at least some of the mystery. With that relief came a greater acceptance of my daughter’s challenges. And with that acceptance, came an even greater sense of love and appreciation for her spirit.

As bad as it was, the diagnosis helped settle my spirit. For years I had questioned and second-guessed myself. But I wasn’t crazy. The physical and cognitive impairments, the trouble with speech – these were real and not the result of something we did or didn’t do or necessarily from the constant changing of medicines and doses as we searched for seizure freedom.

The diagnosis helped me help my daughter. With the name Dravet syndrome came information that I had never had before, such as which medicines may help and which may hurt, which treatments are more likely to work, and which therapies are beneficial. The name connected us to other families dealing with the same diagnosis, other children who reminded me of my own. We met families from Northern Kentucky, Cincinnati, around the country, across the world. We were no longer alone.

Years have passed since Anna’s diagnosis. Thanks to the work of advocates and researchers, doctors now know more about Dravet syndrome. Children get diagnosed younger and find helpful treatments sooner, and I pray that is leading to better outcomes. But still children with Dravet syndrome suffer with disabilities, some die, and families live with anxiety and fear caused by unpredictable and uncontrolled seizures. Much work is left to do.

While questions and difficulties remain, I am thankful for a diagnosis. It has helped me to be more focused as our family faces its challenges. It has also helped me to be more understanding so that at times like that water-dappled spring morning I can find joy in a giggling, pajama-clad girl cleaning the house with a garden hose.

Photo courtesy of Pixabay

 

 

 

‘Your ideas and thoughts matter’

State seeks comments on Medicaid waiver recommendations by June 15

The message at a recent town hall meeting about recommended changes to state programs for people with disabilities was loud and clear:

“Send an email, send an email, send an email!”

That’s what Jill Hunter, deputy commissioner with the Kentucky Department of Medicaid, told people gathered at the Ralph Rush Center in Florence on May 11.

“Your ideas and thoughts matter,” she said.

The town hall in Florence was one of 10 such meetings held around the state in May to share updates and gather feedback on preliminary recommendations to improve the state’s six 1915(c) Medicaid waiver programs. Those programs are designed to help people with disabilities gain services and supports that allow them to live in their homes and communities rather than institutions.

At this time, Hunter said at the meeting, the state does not plan to reconfigure any of the waivers. The state will continue to seek comments and questions from those affected by the waivers, Hunter said, adding that those on waiting lists for waivers also are encouraged to send comments and questions.  Navigant Consulting, Inc., hired by the state to study the waivers, will use that information to issue final recommendations this summer.

Comments and questions should be directed to MedicaidPublicComment@ky.gov. by June 15 to be considered in the final recommendations. For a summary of the preliminary recommendations, email project manager Lori Gresham at lori.gresham@ky.gov.

The state also plans to compile and share with the public a list of Frequently Asked Questions from the comments received at the town halls and through emails. Hunter stressed the importance of “stakeholder engagement” and said the state will take its time and ask good questions in the review and recommendation process.

The state began assessing the waiver programs more than a year ago. In April 2017, Kentucky hired Navigant to study the waivers and recommend ways to improve them. In the fall, the state held 40 focus groups across Kentucky to gather comments from waiver participants as well as caregivers, family members and providers. Navigant also assessed each waiver and interviewed state staff.

From that work, Navigant created its preliminary recommendations, which were presented at the town halls. The recommendations address issues that include ease of understanding and use of the waivers, participants’ needs assessments, budgets based on individual needs, payment rates for providers, case manager training, and improved participant experiences.

The six waivers are Home and Community-Based, Michelle P., Supports for Community Living, Acquired Brain Injury Acute, Acquired Brain Injury Long-Term, and Model II, which is for individuals who are dependent on a ventilator for up to 12 hours a day.

If you think this post may interest someone else or if you just like what you see, please feel free to share and help spread the word about this blog.

Photo from Pixabay.

 

Rabbits and pigs and goats, oh my!

Livestock show for people with disabilities

Two cute rabbits and a pig looking quite noble caught my eye on a flier my daughter brought home from school recently announcing a livestock show for children with multiple disabilities.

Sponsored by the Boone County 4-H Livestock Club, the show is scheduled for 11 a.m. May 12 at the Boone County Fairgrounds. Participants can choose to show a rabbit, chicken, lamb, pig or goat. The event is free, and there will be prizes.

I love animals and the connection children can have with them, so this, I thought, was a great idea. I emailed Christy Eastwood, the show’s contact at the Boone County Cooperative Extension office. Christy did a super job several years ago setting up a cooking and healthy habits program for a group of families with special needs children that I had organized. I was happy to see her name connected to this program.

She wrote back explaining that this is the third year for the show, which was the idea of a 4-H family. While the show is promoted for ages 9-18, it’s open to people of any age. Last year, Christy said, a 2-year-old participated.

Also, it’s not limited to Boone County. “The more the better,” Christy said.

IMG_2444
Boone County 4-H Livestock Club members gather with participants in the livestock show for individuals with special needs at the fairgrounds.

Here’s how the event works:

Upon arrival, participants and their parents sign in, sign a photo release and get a T-shirt. Participants are paired with 4-H youths and their animals and spend about thirty minutes working together and getting to know each other.

Then it’s time for the show. Participants show their animal by either walking it in a small show ring or carrying it to a table. The 4-H partners are with them at all times to ensure the participants do only what they are comfortable with or capable of doing. Participants receive a medal and get their picture taken. The event lasts about an hour.

Christy said everyone benefits from the event.  The 4-H members get leadership and service experience, she said, and the individuals with special needs get the opportunity to interact with animals and other youth.

If you’re interested, you can RSVP to Christy at 586-6101 or ceastwoo@uky.edu. If you can’t commit, that’s OK too. Christy says anyone who shows up can participate. Registering, though, helps her to have enough T-shirts and medals.

4-H is a youth development organization run through Cooperative Extension offices across the country. The four h’s of 4-H stand for head, heart, hands and health. If you’re interested in learning more, here’s a great link I found with an overview : https://4-h.org/about/what-is-4-h/. And here’s one that tells more about Boone County’s 4-H program: https://boone.ca.uky.edu/files/4-h_program_information.pdf. Kenton and Campbell counties also have 4-H programs.

Photos provided by Boone County Cooperative Extension.

Note to readers

Whew that was a long pit stop! I’m back behind the blogging wheel and wanted to let you know I’m headed down a slightly different road.

Up until now, I’ve written mostly with an outward focus. I’ve combined interviews and reporting with personal experiences and insights to write about good things happening for people with special needs in Northern Kentucky.

Moving forward, I plan to write with more of an inward focus. I’ll still do some reporting and interviews. I’ll still celebrate good things happening. And I’ll still focus on Northern Kentucky. But I want to explore the experience of raising a child with special needs in a more personal way.

My family is planning to move, and so we’re looking at our last few months here. As a special needs family, we’ve only known Northern Kentucky. This is where we’ve learned a lot of tough lessons. It’s also where we’ve met thoughtful, generous, caring people who’ve carried us through the hard times and made the happy times even happier.

I hope I can say thank you with this blog, and I hope I can offer some bit of help to others just as others have so generously helped me and my family.

Pins down, spirits up

State bowling tournament promotes inclusion

A version of this column originally appeared in the Northern Kentucky Tribune.

Kentucky has created a new category in high school bowling. On paperwork regarding my daughter’s participation, I saw it referred to as the unified division.

If you think on that a minute, the name could sound like an oxymoron. But don’t tell Highlands High School’s Parker Thomas that.

On a cold Feb. 9 morning in Lexington, Thomas advanced with partner Maddie Shelton to the bowling finals of Kentucky’s unified division. Held as part of the state high school bowling tournament, unified bowling pairs a student with intellectual disabilities and one without for training and competition.

And compete they did. But even in the midst of an intense match up with Louisville’s Southern High School, there was not much division. Thomas kept getting high fives from – and giving them right back to – a man coaching the opposition.

You read that right. The opposition. During competition. In the state finals.

The crowd that had gathered around the bowlers on lanes 19 and 20 at Collins-Eastland Bowling Center cheered on both teams as they battled back and forth. Strike after strike after spare. Pins crashing. Spirits soaring.

parker-thomas-2
Parker Thomas of Highlands High School (photo provided)

Three NKY high schools represented

Highlands, the Region 5 champ, was one of three Northern Kentucky teams to make history as competitors in the first state tournament for unified bowling. Region 5 runner-up Simon Kenton also qualified thanks to the skills of Nick Blacketer and Mitchell Kreidenweis.

From Region 6, my daughter, Anna Mimms, bowled with partner Hannah Day to represent Cooper High School. In the qualifying round, they bowled a 120 to earn a No. 3 seed, followed by Highlands at No. 7 with a 99 and Simon Kenton at No. 8 with a 97.

In all, 13 unified pairs represented ten schools and all eight bowling regions in the state. The teams bowled two-person Baker games, in which bowlers on the same team alternate frames to bowl a complete game.

I hadn’t planned on being a reporter that day. I was there to cheer on Anna, who has special needs, and Hannah in a state championship – an event I never saw coming for my daughter, sister to two big brothers, both former multi-sport high school athletes. A daughter who tried out for bowling at a different high school three years ago with little to no chance of making it. Who was cut and, even so, tried out again the next year. Who loved bowling with Special Olympics but so wanted to wear her school’s team colors, just like her brothers had.

The girl even designed her high school class ring with a bowling ball and pins on it.

Then, for unrelated reasons, came the switch to Cooper. Bowling coaches Joe Deters and Elmer Bales said yes to Anna’s being on the school’s team. And when the state presented the prospect of unified bowling, the coaches said yes again.

That is how I found myself, on that championship morning, breathing in an atmosphere of shared knowing. It is a shared knowing of hopes and dreams amid challenges and adjustments. It is watching together loved ones with special needs achieve something their families probably never saw coming either.

This bowling division had an immense sense of unity and inclusion. I felt compelled to put on my reporter’s hat.

Sport promotes growth and inclusion

Sarah Bridenbaugh is an assistant commissioner with the Kentucky High School Athletic Association. As part of her duties, she oversees bowling and is the association’s main liaison for unified sports. She was busy during the state competition gliding among the lanes, but during a break, the former high school math teacher and basketball coach talked with me.

Her enthusiasm for unified sports was apparent immediately. She commented on the great turnout and how much the teams enjoyed the tournament.

“This is an opportunity for all student athletes to represent their high school at a state championship,” Bridenbaugh said. They get to wear their school colors, do their school cheer, partner with another student and be part of a team, she added. Unified sports, she said, promotes the growth of athletes and inclusion for those with special needs.

KHSAA partners with Special Olympics of Kentucky to offer unified sports. Bowling is the second unified sport in Kentucky. Unified track and field was first offered in 2015.

Bridenbaugh said she envisions unified sports growing in Kentucky. While the state has no immediate plans, she said she hopes to have at least one sport available for unified athletes in each of the three high school sports seasons.

I could see that the competition meant a lot to her. “One kid getting that opportunity was worth all the work that we’ve done. … [It was] an emotional and spirited competition,” she said.

The unified competition was “a great way to kick off the state bowling tournament,” Bridenbaugh said. “The enthusiasm of these teams will carry over to the singles and team competitions.”

Enthusiasm electrified the crowd

Even with the tournament excitement swirling around me, I focused intently on Anna and Hannah as they bowled.

The girls had advanced to the quarter finals after the top three seeds got a bye in the first round of head-to-head competition. They were bowling against a team from Meade County High School when I heard an unfamiliar male voice cheering for Anna after she bowled.

I turned to my right to see a Meade County fan cheering on my daughter and her teammate. For the first time I noticed what appeared to be a family next to me. I got a quick reminder of what this competition was all about.

“Isn’t this great?” I said to the woman.

She agreed. She told me that she was the mother of the two Meade County boys, Parker and Brandon Whitaker. What a great opportunity for them to compete together for their high school, we agreed again. I widened my focus to include the two boys bowling against my daughter, cheering them on as well.

The Whitaker brothers won 99-70 and went on to the semi-finals, losing to Highlands 140-93. It was during that game that I first noticed Parker Thomas. As my husband put it, his celebrations at each frame he bowled “electrified the crowd.”

Highlands, and the ever enthusiastic Thomas, moved on to face No. 1 seed Southern in the final.

Coach happy to be involved

When Highlands girls and boys bowling coach Glenn Schmidt first learned of the unified division, he was less than enthusiastic.

I caught up with the coach, who owns La Ru Lanes in Highland Heights, during a break between the unified and singles championships. He told me that the prospect of coaching in another division left him unsure and wondering “How am I going to do it?”

But that all changed at the tournament.

“This is what bowling is all about,” he said. “It means the world to these kids.”

While Schmidt has had bowlers with special needs on his team for years, he appreciates the recognition and opportunity for inclusion they get in the unified tournament.

“I can’t say enough good about it,” he said. “I was completely wrong about it in the beginning, and I’m so happy I got involved.”

Schmidt said he had already talked with other coaches who didn’t participate this year but plan to next year. The word is going to spread about the success and support of this tournament, he said.

“I think it’s going to get bigger and bigger with leaps and bounds.”

All-around victory

The morning came to a crescendo as Highlands took on Southern in the finals. Fans that had been spread out among the lanes all morning gathered in to focus on the four bowlers. Joining Thomas and Shelton from Highlands were Dallas Derringer and Nathan Burnett from Southern.

The back-and-forth was intense as both teams displayed the skill and focus that earned them a spot in the finals. In the end, Southern prevailed, 191-169. The teams had spurred each other on to their best scores of the day.

All of the tournament bowlers gathered for a group photo, and all who competed in the quarter finals and above got their name called to receive an award, amid snapping cameras, from KHSAA Commissioner Julian Tackett.

Still, just to be here was a victory. Not only for the athletes, but the families, the coaches, the tournament organizers, the friends who came to watch. Who knew that knocking bowling pins down could raise so many people up?

The bowlers displayed “outstanding sportsmanship,” Bridenbaugh said, and set an example for a lot of athletes. She pointed out that at the end of the tournament, Thomas immediately went to Derringer, shook his hand and hugged him.

I didn’t catch those gestures. But I did hear Thomas after he had walked away from the lane toward those who had been cheering him on.

“Second place. That’s OK,” he said with the enthusiasm the crowd had come to expect and appreciate.

Yes, Parker Thomas. That’s OK. That is so much more than OK.

For complete results of the unified bowling tournament, click here.

KHSAA offers an online presentation for those interested in learning more about unified bowling, including information about how to get started at your school, here.

Top photo by Tim Webb/KHSAA