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. Still I sit at my computer and cry after reading about yet another young life lost to this catastrophic epilepsy. Still 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.