November 2016 – Special Needs Northern Kentucky

Grace and gratitude

Father reflects on kindness of peers, community

During November, readers were invited to share stories of thanks from along the road. Here is the final guest post for the month. Thanks to everyone who contributed. Thank you for sharing your words, your hearts and your children.

by Greg Ashcraft

I thank God every day that my daughter Grace came into my life.

During this month of Thanksgiving, I reflect on the positive impact her peers and community have had on Grace, who is 12 and has Down syndrome.

Grace’s peers at school accept her not because of her disability but because of her personality. Every day she goes to school, and every day she comes home happy.

This year at Gray Middle School, some of Grace’s classmates won a limo ride for the day. Before they took the ride, I received a call asking if Grace could go. I knew she did not win the contest and asked why she was invited. One of Grace’s peers, I was told, wanted to give their spot to Grace so she could experience the limo ride.

I was so thankful. The limo ride meant a lot to Grace. She was so excited and loved sitting in the car and driving around with her friends. They went to lunch at Flipdaddy’s. I will forever be grateful to the child who showed such kindness.

The biggest worry I have as a father is whether my children will have friends. I am thankful that Grace has many friends. I am most thankful for her best friend, Jayden Wren, because he means so much to her and would do anything for her.

Jayden and Grace became friends in second grade. Jayden, who has always been Grace’s peer helper, makes her smile every day and takes the worry away. They go to school dances together, ride a golf cart together and pull crazy pranks on Grace’s brother and sister.

They have a great time, and Jayden is always there when Grace needs him. I am thankful he came into her life.

As Grace’s father, I’ve learned that you can’t worry about what other people think, that you have to let your special needs child be a kid. I will end with a line I heard on a TV show. The father of a special needs child was asked why he didn’t care what people think. His reply: Because when you have a special needs child, you become bullet proof.

Happy Thanksgiving!

Greg Ashcraft trains and coaches youth athletes in Northern Kentucky. He is a husband and a father of three.

Photos provided.

Why am I thankful?

Son’s stroke changes mother’s outlook

Readers share their stories of thanks from along the road. I’ll be posting them through this Thanksgiving month. Even though the original deadline has passed, I would love to read more. So if you’re inspired, please consider writing and submitting. Check here for guidelines.

by Jennifer Putnam

It’s funny how what you are thankful for can change from day to day. Six years ago, my son Aiden had a massive stroke and that changed a lot about the way I look at the world.

I used to be so concerned about what Aiden was doing compared to everyone else. I was thankful on the days when he made his way up to the top of the pack with whatever task he was attempting. And then, in the blink of an eye, my focus completely changed. Now my biggest worry is if he will have a happy and independent life, and I am thankful for every small achievement he makes.

I am thankful for the family and friends we have made along my son’s journey as well as the friends who have stuck with us through all the highs and lows. I will be the first to say that it isn’t always easy to be my friend. I have days where I miss our old life and I can be grumpy and no fun to be around. I also need a lot of help because I can never seem to get our hectic schedule right and I am constantly double-booking appointments. I am lucky that my family has found trusted friends willing to pitch in and be a part of our village. They pick me up when I am down and are always willing to shuttle my family from place to place.

As a parent of a special needs child, I think the things that I am truly thankful for may be different from those of many “average” families. I have been known to do a happy dance in the middle of my driveway upon opening a letter from my insurance company letting me know that some previously denied service will now be covered. I am thankful for hospital schedulers who listen to all my crazy questions and spend hours with me on the phone making sure that all my son’s appointments are properly scheduled. And if I can squeeze multiple visits into one trip across the river, I may just cry tears of joy.

I know I am blessed because even after all he has been through, my Aiden walks through life with a smile on his face and love in his heart.

I am thankful for the nights when Aiden puts on his nightly stretching brace without compliant even though I know the brace, which keeps his right hand from becoming a permanently closed fist, hurts him and makes it hard for him to sleep. I know I am blessed because even after all he has been through, my Aiden walks through life with a smile on his face and love in his heart.

Now six years after Aiden’s stroke, I have learned to appreciate all the little things that never crossed my mind to be grateful for before. My family celebrated with ice cream on the night Aiden brought home his standardized test scores and was one level up from the bottom because we were all so thankful that he was not on the bottom level. The day he rode a bike again turned into an all-night party, and the video of him catching and throwing a baseball made him an internet sensation. At least within our family.

But most of all, I am thankful for the “normal” days. The days without doctor’s appointments and therapies. I love the days when my family wakes up and has breakfast together and stays in jammies until noon. Or the nights when we snuggle by the fireplace and watch a movie together and everyone gets along.

I spend an unrealistic part of my life worrying about the future. Will my son go to college? Will he drive a car, get married or have children? Most of all, will he be happy? So much of the time I can’t seem to turn off my brain from these things, but the normal days keep me in the moment and keep my brain out of the unknown future. Some people don’t even think about normal days, but for me, they are something that makes me truly thankful.

Jennifer Putnam is a small business owner, substitute teacher, wife and mother of three. She enjoys writing in her free time.

Photos provided.

Giving it another try

Salon visit becomes a moment of kindness, thanks

Readers share stories of thanks from along the road. I’ll be posting them through this Thanksgiving month. Even though the original deadline is passed, I would love to read more. So if you’re inspired, please consider writing and submitting. Check here for the guidelines.

by Elizabeth Huss

My story of thanks takes place inside a hair salon in the Shoppes at Burlington. My 8-year-old son, who’s on the autism spectrum, needed a haircut. I know that it’s best to get a kid’s hair cut every six weeks, but let’s just say I usually stretch those six weeks out as far as they can go. This story may help explain why.

We were the first customers at the hair salon on that cloudy Sunday morning. A young woman of about 18 with long blonde hair and a pleasant smile walked up to greet us. I said a quick hello while running interference between my son and the little bowl of lollipops on the front desk. She smiled and directed us to her work area in the otherwise empty salon.

“Okay, hop up into the chair,” she said to my son.

pics-sarah-took-backyard-3 — Elizabeth’s son

My son climbed into the chair. I wondered if he was finally getting used to this process. The woman took out a black cape and draped it around my son. Three seconds later, the cape was on the floor.

“He’s not too crazy about wearing a cape,” I said, laughing halfheartedly.

“Well,” she said, looking at the mop on my son’s head, “there’ll be a lot of loose hair.”

“It’s okay,” I said. “I’ll clean him up after we get home.”

I immediately pictured the inch-thick coating of his brown hair on the sleeves of my sweater. It wouldn’t be the first time my sweater had been through this.

The woman started to spray my son’s hair with a water bottle. He swiveled his head to dodge the mist. Next she took a comb and scissors from her apron and began separating lengths of his hair. Suddenly he grabbed her wrists. Gently, she tried to free herself from his grip without hurting him with the scissors.

“I’m sorry,” I said, tears starting to burn behind my eyes. “I can hold his arms.”

I put him in a firm bear hug while trying to give her adequate space to work. It was a ridiculous pose, and I hoped no other customers would walk into the shop. As she worked the scissors, I met my son’s eye and frowned at him as he squirmed. I couldn’t imagine how she could get a straight cut while he rehearsed his own version of the Twist.

“Good job, bud,” the woman said a few minutes later as she put the scissors down.

I looked up at her with a confused expression. Were we in the same hair salon?

She lifted an electric trimmer out of its stand and clicked it on. I closed my eyes. My son struggled at the sound of the trimmers as they approached his sideburns. My bear hug loosened as he slid toward the floor. The woman clicked off the trimmers, watching my son.

It’s surprising how tired a person can be after a simple five-minute haircut. But I was more than that. I was embarrassed about my son’s behavior and wondered why in the world he couldn’t just sit and enjoy the attention to his hair.

“I think we can let it go at that,” I said, somehow getting my son back into the chair. “It looks better.”

She and I looked down at his long sideburns and bangs that hadn’t been touched. I waited to hear her sigh of relief and swift agreement.

Instead she said, “Why don’t we give it another try?”

I stared at her. I’d given her a way out of this stressful, certainly frustrating, situation. We would’ve paid and been out of her life. But she wanted to give it another try.

She let my son examine the trimmers, putting his fingers on them to show him they weren’t sharp. When his haircut was complete, I paid and thanked her. And my son finally got his lollipop.

Outside in my car, I sat behind the wheel and felt thankful. Thankful that this pretty young woman, who came in on a Sunday to cut hair all day, was willing to try again when it came to my son.

Elizabeth Huss is a stay-at-home mom and freelance writer from Florence.

Council seeks input

State to assess waivers

Changes may be in store for the various Medicaid waivers that help provide care and services for people with disabilities. Regarding those possible changes, a state advocacy group is asking for public input.

The Commonwealth Council on Developmental Disabilities is conducting an online survey of people with developmental disabilities and their families as it prepares to make recommendations to the state. The Council, which operates out of Frankfort and comprises members from around Kentucky, strives to empower individuals so that they achieve full citizenship and inclusion in the community.

About the waivers, the Council wants to know what works well and what needs improvement. Surveys should be filled out as soon as possible, preferably by the end of this week. You can find the survey here or at https://www.surveymonkey.com/r/6QVZQ2X.

The survey was prompted by plans of the Kentucky Department of Medicaid Services to assess the state’s waiver system. These waivers are Home and Community Based, Michelle P., Supports for Community Living, Model II, Acquired Brain Injury and Acquired Brain Injury Long Term Care.

The waivers provide extensive services for the elderly and disabled. Services vary by waiver and include physical and occupational therapies, respite, nursing, behavioral supports, community living supports, personal care, employment supports and others.

For more information about Medicaid waivers in Kentucky, visit http://chfs.ky.gov/dms/mws.htm.

For more information about the Commonwealth Council on Developmental Disabilities, visit http://www.kyccdd.com/.

Picnic full of fall fun

Organizing a community event was unknown territory for me, a little daunting but worth exploring. I knew one thing: I wanted to invite families who deal with special needs. Whole families. So that everyone would feel accepted and understood.

I also wanted to have an outside event, so I reserved a park shelter. The one good date available was just before Halloween, so pumpkins and costumes seemed a natural fit.

The result? Picnic in the Park with Pumpkins.

I didn’t know how many people to expect. I hoped at least one person would come. About 50 people did.

Thanks to all the families who spent this past Sunday at South Fork Park in Florence. We enjoyed sunshine and a warm breeze. My grill master husband cooked up hot dogs and bratwursts. People set up chairs and blankets and gathered under the shelter to talk and eat.

We talked about families, schools and concerns about health, medicine and resources. We played yard games, listened to my nephew rock his guitar and broke into a sing-a-long of “Shut Up and Dance with Me.” Superman, a pirate and various other characters were spotted on the playground and basketball courts. Families visited the park’s creek and walking trail.

The day was one of beauty, relationship and wholeness.

A grant I received from the myNKY Nano Grant Program helped make this great day possible. A big thank you to the people at Skyward and The Center for Great Neighborhoods! They are all about creating community. If you want to know more, I wrote about the program in a previous post.

As one family was leaving the picnic, a man and I talked about how getting out of the house can be a challenge but how valuable the effort is. There was talk at some point in the day of this becoming an annual event.

As I continue on this blogging journey, that might be a road to explore.