What I Wish I Knew Then

Heather Honaker visited with four family members of children with special needs for this month’s special focus. They offered tips from their personal experience on what they did right in raising a special needs child – and what they wish they could do again. Here’s Heather with more:

We got a Down syndrome (DS) diagnosis before our daughter was born and I was devastated. I had never spent any time with anyone who had special needs. I was afraid her life would be so much less than and I worried about her effect on our family. 

In an effort to help, my husband scheduled coffee for the two of us to meet with another mom of a child with DS. She brought photos of her son in the hospital, talked about early intervention and shared his path to college. I left that meeting hopeful and scheduled time with two more moms. The acquaintances giving advice turned into close friends and cheerleaders.

I still seek out new parents to talk with to continue my education. I recently talked with four families about their thoughts on successful special needs parenting.

Special Success: Mike Freville and His Son Brandon

133334 Brandon Freville

The oldest of Mike and Laura’s three children, Brandon, was born with the umbilical cord wrapped around his neck several times.

He suffered two seizures within his first couple of hours and was left with right side cerebral palsy and spasticity.

“The doctors told us they did not know if Brandon would survive and were very upfront about letting us know that if he did, he could have some mental and physical challenges. The first few days, we were in shock. We cried and prayed a lot and really did not know what to expect,” says Mike.

“We started therapy within the first few months of Brandon’s life. What had been shock and uncertainty turned into hope.”

What is the best thing you did for Brandon?
We did our best to get Brandon all of the most current therapy. We did braces with rubber bands to stretch his hand out, we’ve done electric shock stimulation and started Botox in its early stages of use for spasticity. He currently wears some relatively new technology called a Walk Aid that electronically stimulates the muscles in his leg when he walks to improve his gait.

We also pushed him to be as active as possible. He played T-ball at Junior Deputy, basketball in the Upward program at Calvary Baptist, earned a black belt in taekwondo, participated in Cub Scouts and ran track for ACCESS in the Special Olympics. We believe that this is where he gets his love for being involved in things.

Before COVID-19, you would find him in the concession stand at Catholic High during football and basketball games. While at ACCESS he loved to work the plant sales and still shows up to help out from time to time. He is a Knight in the Knights of Columbus and sits on the board at ACCESS Schools.

What do you wish you would have done differently?
We always have doubts about whether or not we have done all we could have for Brandon. … “Have we done too much for him? Sheltered him too much? or Have we set him up to live on his own someday?” Our goal is for Brandon to be involved in the community, live on his own and support himself.

Special Success: Fran Lanari and Son Michael Joe

Photo: Brandon Creek

Michael Joe’s parents, Fran and Michael, did not know of his DS diagnosis before he was born. At about 4 months old, after learning he was in heart failure, he had his first heart surgery with several others to follow.

“After 3 years old, he was very healthy and very robust. We started, on the day of his birth, doing mouth and tongue massage to strengthen all of that for his speech. That has paid off very well. He has excellent speech. We started therapies at 3 months old,” says Fran, who also serves as treasurer of the Arkansas Down Syndrome Association (ADSA) board.

What is the best thing you did for Michael Joe?
Looking back, the best thing I have ever done for Michael Joe was to believe in him. He wants to do so much in life. I tell people all the time that the biggest disability that he has is his mom! I am sometimes too protective because I don’t want him to be hurt or disappointed. But isn’t that also what we want for our typical children?

What do you wish you would have done differently?
If I could change anything it would be not to have been so fearful and stressed. Our babies with DS were given to us as a blessing to know true joy, and they are just here for a short time. Love them and enjoy their gifts of wisdom and truth.

Where did you find the best information to help you make decisions?
It was through the families and connections I gained through the ADSA. Of course, Arkansas Children’s Hospital (ACH) and Easterseals were extremely helpful, but through the years, ADSA gave us the information, resources and social activities to help us navigate this different world.

Today, Michael Joe is a senior at Robinson High School and is looking forward to college with hopes of a career in entertainment.

Special Success: Linda Stump and Her Daughter Molly

Molly is a recent graduate of ACCESS Academy where she was class president and a captain of the cheer team. She just started Project SEARCH, an innovative job-training program that includes a nine-month internship. Nonverbal at 3 1/2 years old, she was diagnosed with apraxia — a neurological syndrome characterized by difficulty with motor planning and performing tasks — through the Developmental Center at Arkansas Children’s Hospital.

Photo: Hannah King

“It was very frustrating to only get the answer of ‘we’ll have to wait and see.’ As her parents, we wanted a clearer picture of what her future would look like and that’s just not possible,” says Linda.

“We were told that we had to decide between being more aggressive with Molly’s sign language or put her on an augmentative device, as there was a good chance that Molly would never be verbal,” says Linda. “[Then] Molly started at ACCESS when she was 5 and she began making verbal sounds within a few months. Now at the age of 18, she is still in speech therapy, but speaks very well.”

What do you wish you would have done differently?
I wish we would have gotten a second opinion prior to Molly being 3 1/2 years old. We knew she was developmentally delayed and I wish we had sought help sooner.

How did you find information to help you make decisions for her?
The first person to help us was a social worker at ACH. Since Molly was 5, we’ve been advised by the team at ACCESS Academy.

What other advice do you have for Little Rock Family readers?
Following a week stay at ACH, God really laid on our hearts that what Molly was and was not able to do independently as an adult was not as important as her being happy and healthy. I’ve repeated this to myself many times. Happy and healthy is what’s important and everything else is a bonus.

We are so thankful that God chose us to be Molly’s parents. She brings joy to all who get to be a part of her circle. She is smart, beautiful, kind, hardworking and above all else, she is happy and healthy!

Special Success: Zach Fendley and His Sister, Kylie

Kylie dances with her best friend and sister-in-law Lauren.
Photo: Kati Mallory Photo and Design

“When Kylie came into my life at age 5, I honestly don’t remember thinking anything about her DS. I thought, ‘Zach is Zach and Kylie is Kylie’ with her unique abilities just like anyone else,” says Zach.

Zach is the slightly older brother of Kylie Purifoy. He and his sister are part of a close, blended family that also includes their younger sister Maycee. Growing up so close in age, Zach and Kylie shared the same school for many years and had a lot of the same friends.

“Kylie loves to FaceTime and talk on the phone with her best friend Lauren, who happens to be my wife,” says Zach. “When Lauren and I got engaged, she was initially somewhat upset because I was ‘marrying her best friend.’ Not a cool brother move.”

What is the best thing your parents ever did for you two?
The best thing they did for her and really all of us, was treat all of us siblings equally. They challenged all of us to be the best we could be with our own unique set of gifts. … There is a mutual growth that occurs when neurotypical individuals and individuals with diverse abilities spend time together.

They always made sure things were fair and respectable, but we learned so much … by just living life together. We worked out conflict regarding most things siblings argue about growing up: who gets to sit in the front seat, what movie we were going to watch, who was going to do which chores, etc.

Is there anything you wish you or your parents would have done differently?
No. I think a lot of times it’s easy to worry about how we could have done things differently or better. In reality, you’re making the best decision at the moment with the knowledge, insight and circumstances you presently have. Pray, act, react, evaluate and move forward a better parent, brother, sister, etc. A great lesson I’ve learned is to be grateful for the present moment and to not compare to others — “Comparison is the thief of joy.”

Heather Honaker is circus ringleader for three kids 4 and under — two typical, one not, but they all think they are special. You can follow along as the messiness unfolds around her family by reading the Typically Not Typical blog.

Originally published in the November 2020 issue of Little Rock Family.

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