Sarasota mom speaks up about apraxia

Three years ago, when Sarasota's Amy Tanaka looked at her 1-year-old son, Adam, she kept hearing the voices of her pediatricians and friends.

"Don't worry."

But she was worried. Adam looked like he wanted to make sounds, only he couldn't.

"When he was a baby, there was no 'goo goo, ga, ga,'" Tanaka said in her best baby voice. "If he tried to say something, nothing would come out. Any time he would try to communicate, it was all mumbled."

While her support group of friends and family was trying to ease her frustration, she didn't want it to be eased. She knew in her heart that something was wrong, and she wanted to find help.

Amy and her husband, Paul Schwab, noticed delays in their son's fine motor skills. They wanted answers.

"Being around kids your whole life, you just notice," Amy Tanaka said. "The normal steps babies take at a year old, he didn't do any of that. My pediatrician said, 'Every kid speaks at different ages ... check back when he is 18 months."

Amy Tanaka wasn't going to wait. She went to the internet and started searching. Eventually, she found apraxia, a neurological condition that can affect the fine motor skills which lead to speech. She told her friends and family she had found the answer.

Convincing doctors was another chore, but she finally found Pediatric Therapy Solutions and Angelena Rosa examined Adam and confirmed Amy Tanaka's diagnosis. Adam was pointed in the right direction.

Tanaka hopes other children with apraxia will not get lost in a system that often tells parents not to worry. To that end, she had combined with Sarasota's Kelli Jaco, who owns Jaco Boxing & Fitness with her husband, Adam Jaco, in presenting The Half Dozen Donut Run Sept. 8 at Nathan Benderson Park in Sarasota.

Four years ago, Kelli Jaco and Tanaka, friends and workout partners, formed KAevents, a nonprofit to raise funds for various causes. While they had raised more than $250,000 for various charities, they hadn't held an apraxia event. This year, Tanaka asked Jaco if they could do one.

"For me, it hits home," Tanaka said.

The Half Dozen Donut Run was born.

"On a daily basis as moms, we question if our children are developing OK," Jaco said. "For me, this race is about creating awareness. There is a reason Adam is doing so well now, because Amy had him in therapy early. Amy is the strongest person I know. She has become an advocate for her son and now he is flourishing."

Tanaka wants other parents to understand apraxia and its signs.

"There are guidelines for a reason," Tanaka said of a child's development. "If your child doesn't fit, it should be cause for concern. My advice for parents would be 'Yes, worry. Be concerned.'"

Adam, now 4. went through speech and pediatric therapists as the parents tried to find the right fit. Currently, he works with childhood trainer Dani Williams of NXT Generation, which teaches social gym skills in therapy designed for individuals with exceptionalities. Tanaka loves what Williams has been able to do for her son's fine motor skills and his physical well-being.

He also is enrolled at Pinnacle Academy in Lakewood Ranch.

"Amy searched and searched to find the right professionals," said Pinnacle Academy Director Kirstina Ordetx, who has more than 20 years of experience in providing developmental and therapeutic intervention to children with learning disabilities. "The earlier you can identify the need, the better. From birth to 3 years of age are critical years. They need to be practicing speech. Did you know that it takes 11 muscles working together to make the 'ba' sound?"

Pinnacle has one teacher for every four students and Adam has flourished since he joined the school a year ago. Last week, Adam was working with teacher and behavioral therapist Courtney Rune.

"We use a lot of visuals," said Rune, who was giving Adam high-fives as he accomplished various tasks. "And we work blowing bubbles, blowing on pinwheels. We get their mouths moving."

The environment and the enthusiasm has Adam excited about learning.

"Adam is a tiny, little precious thing," Ordetx said. "But he aggressively attacks the day. He is eager to learn."

Besides helping Adam, the school provides a different kind of support for parents like Tanaka. The parents whose students attend Pinnacle understand her plight because they are going through it in some form. Parents also can have a consultation each Thursday with the teachers and therapists.

"Pinnacle, Kirstina, the teachers ... they all have been amazing," Tanaka said. "Adam has exploded in speech, in interaction."

Tanaka, who owns Silver Palm Realty and Aurora Appraisal with her husband, doesn't know if her son ever will be able to attend a "regular" school, but he is making advances in that direction.

"He can say sentences now," Tanaka said. "He is working on putting those together. I don't know if he can keep up in a normal classroom because he is very active and hyper — so am I — but he is talking. We want to keep going.

"I want to help other parents. I want to tell them that you can get to a dark, depressed state. You cry over wanting the best and feeling helpless. I'm a talker, and I talk a mile a minute. But everyone takes for granted how easy it is to speak."

She tells the story of waiting in the grocery line with Adam in the shopping cart and people ask Adam, "Hey, what's your name?" He doesn't reply and an awkward moment ensues.

"You don't want to come out," Tanaka said.

She wants other parents to understand the challenges.

Seven months ago, Amy and Paul added daughter Lauren to their family. The parents keep a close eye on her, and wait for her first words.

Likely, everything will be fine. But at any sign of trouble, they are sure to do one thing.

They will worry.