ACCESS Success: Meet Grace Glasbrenner, Diagnosed at Age 2 With Apraxia

ACCESS Success: Meet Walton Starling, Diagnosed at Age 2 With Apraxia

ACCESS Success: Meet Josifaye White, Diagnosed at 17 Months With Apraxia

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ACCESS Success: Meet Grace Glasbrenner, Diagnosed at Age 2 With Apraxia
An Interview with Grace’s Mother

No one would have guessed that 3-year-old Grace Glasbrenner would recently be described as “the loudmouth of the group” when she joined ACCESS Preschool in January.

The term is used lovingly, and with excitement, because Grace began this year without speaking. Grace has apraxia, a neurologically based speech disorder characterized by the incapacity to program the positioning of speech muscles for speaking, making sounds and creating the breath support needed for the intentional production of language-based sounds.

“Not hearing your child tell you she loves you or ‘Good night’ – it’s hard,” said Elizabeth Glasbrenner, Grace’s mother.

Grace was born Dec. 12, 2005, almost a month and a half before her Jan. 29 due date.

“I didn’t know I was in labor at the time,” Elizabeth recalled.

After an otherwise typical pregnancy, a premature birth was “scary,” Elizabeth noted, but, despite an almost two-week stay in the NICU at St. Vincent Doctors Hospital in Little Rock, Grace seemed to be hitting all of her developmental milestones and was sent home just in time to leave cookies out for Santa.

Later, when Elizabeth noticed Grace wasn’t crawling at 12 months, the family pediatrician was consulted and recommended physical therapy. Grace was enrolled at a therapy clinic in town and began crawling, and, by 18 months old, walking.

Still, she wasn’t speaking.

“We chalked it up to her being born early,” said Elizabeth, adding that she and her husband, Jeff, thought Grace would improve with time.

At Grace’s regular age 2 checkup, her pediatrician recommended speech therapy.

Eight months later, without significant progress (Grace spoke only three to four words after attending three one-hour therapy sessions a week), Elizabeth called a friend at a local hospital who helped her schedule an evaluation. Once Grace was assessed, she was given her current diagnosis of apraxia, and she was enrolled in a new speech therapy program.

Around this time, Elizabeth and Jeff had begun teaching their daughter sign language, using a book to teach her 25 to 30 words.

It “helped tremendously,” Elizabeth said. Grace could now communicate with her parents but was limited to the signs she understood.

At the same time, Elizabeth “didn’t get the feeling that [Grace] was going to progress” in her new therapy program. Described as a “happy child,” Grace would “throw a fit” when it came time to go to therapy.

“At that point, I was pretty frustrated,” Elizabeth said. “I didn’t have anything to compare it to. There’s so much [information] on the Internet, and yet, so little.”

A family friend, ACCESS Director of Development Beth Johnson, stepped forward and suggested a meeting with Cindy Young, ACCESS chief operations officer and co-founder.

“Cindy talked with us for an hour. She listened to us, and then she described apraxia and Grace’s everyday behaviors back to us. She was dead-on,” Elizabeth said. “It was the first time I sat in a room and felt like somebody got it.”

The Glasbrenners were then invited to observe the ACCESS 2-year-old classroom taught by Suzanne Carter.

“I came out of the classroom, and I bawled,” Elizabeth remembered. “I thought, ‘This is what she needs. It made sense.’”

Elizabeth “sped through” the paperwork process and enrolled Grace in the ACCESS speech, physical and occupational therapy and preschool programs in January.

“Within two weeks, we were seeing improvements,” Elizabeth said. “Given all the therapists we had been through without progress, it was remarkable to me. I wish we had been here earlier, but hindsight is 20/20.”

Not only was Grace’s communication improving, her feeding habits, which the Glasbrenners hadn’t associated with her disorder, improved.

“The part I missed in all that is that speech is the basis for lots of development. I didn’t realize that,” said Elizabeth. “It was like a big puzzle came together, all at once, when we [came to ACCESS].”

Now, Grace is thriving and is described by her initial teacher, Suzanne, as “one of the most social kids in her classroom.”

“She’s made so much progress in such little time here,” said Elizabeth. “Every time I hear her say, ‘Mommy, I love you,’ or anything like that, I just melt. It was such a long time coming. All the staff embraced Grace like she was their own child. She loves it here and tells me, ‘I get to go to school tomorrow!’”

As for the instruction Grace receives through speech, physical and occupational therapy,” Elizabeth called it “brilliant. It never occurred to me to put pictures in my house to help her communicate with me. The method ACCESS uses absolutely works.”

Elizabeth marveled at the tools she was given as a parent: “Not just the physical materials but the knowledge.” She especially enjoys the daily notes about Grace’s sleeping and eating behaviors and activities, which help her foster more communication with her daughter.

“[Grace’s teachers] make every student participate. Grace can get lost in a crowd because she doesn’t talk as much, but at ACCESS, they make her participate,” Elizabeth said, noting a recent exercise where each student read the same sentence from a story.

Asked what she would share with other parents about the ACCESS difference, Elizabeth faltered to choose specific words but then decided that “the environment is different, in a good way – set up for specialized problems. The methods are so good; I’ve got Gavin on a waiting list,” she said, referring to her 2-year-old son without a developmental delay.

The ACCESS teaching methods are “things you never think about,” in Elizabeth’s words. “As a parent, you think, ‘I need to be teaching my child the alphabet.’ Here, they said, ‘She’ll learn the alphabet, but let’s first focus on sounds.’ That makes sense.”

Asked why she thought it took some time to find ACCESS and enroll Grace in the program, Elizabeth responded: “I needed a person I could talk to. I needed the big picture. I had no idea of the caliber of services and programs in Central Arkansas and had started to look at other cities for possible solutions.”

The ACCESS Point of View

“We changed that family’s life,” Suzanne asserted. Grace’s rapid progress was “total affirmation for the team here. The methodology – that’s what we do here, we do it well, and it works. And, the family put in the work at home; they are so invested, and they wanted so much more for [Grace].”

“I recently visited with Jeff and observed what a change [Grace’s newfound voice] must be for their lives,” said Suzanne. “Jeff travels a lot and told me that his previous conversations with Grace were one-sided. ‘Now, she talks my ear off,’ he said, ‘[Grace] has even said, ‘Daddy, come home!’’”

The ACCESS team is glad the Glasbrenners found our organization. Grace is progressing every day and is poised to possibly transition to a school for typical children in a couple of years.

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Do you know a child that may have symptoms of apraxia or another suspected developmental delay? The ACCESS Evaluation and Resource Center provides comprehensive and thorough developmental, psychological and psycho-educational evaluations and diagnoses. We offer a relatively quick admissions process and can help navigate families through state and federal therapy funding processes. ACCESS also offers outpatient pediatric speech, physical and occupational therapy. Call Beth Rice, admissions coordinator, at 501-217-8600 or e-mail bethr@accessschools.org. You may also contact Beth about enrolling children without developmental delays – children like Gavin – in the multisensory ACCESS infant stimulation program and ACCESS Preschool.

ACCESS Success: Meet Josifaye White, Diagnosed at 17 Months With Apraxia
An Interview With Her Mother, Alesha

“Josey and I were told our daughter was a ‘failure to thrive’ baby when she was three months old. She had severe acid reflux and cried all the time; she wouldn’t sleep for more than 45 minutes at night. She couldn’t eat; in addition to acid reflux, her allergies were so bad, she would vomit almost everything she ate, immediately,” says Alesha White, recalling her daughter’s infancy.

Prepared for the worst, Alesha would drive Josifaye to work every day with an elaborate “outfit preservation” fix: a Kroger bag, overlaid with a blanket, topped with another Kroger bag.

“Most kids don’t throw up four times on the way to work,” said Alesha. “I kept six outfits at daycare and two more in the car.”

Josifaye, born in April 2008, visited the hospital five times the same year, the longest time being five days. Her doctors couldn’t figure out exactly what was wrong with her. Because she couldn’t keep anything down, she was malnourished and underweight. Her development was delayed. Her hospital visits included IV feeds and calorie-rich formulas, with the goal of keeping down at least an ounce.

“We were on a first-name basis with the pediatrician’s office,” said Alesha.

It was when Josifaye was six months old, and Alesha met some of her mother’s friends who worked at ACCESS while shopping, that she received some unexpected help: “They asked me if she was sitting up, saying ‘Da-da’ and babbling. They asked me, ‘How’s her feeding?’ She was really small. They said, ‘Give us a call.’”

At an evaluation at ACCESS just a couple months later, in January 2009, Alesha, despite the months of “prescriptions, copays and missing at least one day of work a week” didn’t think Josifaye “had issues.” She explains: “I didn’t feel like [Josifaye] was in an area where she didn’t have brain function. You could look in her eyes and tell she had something to say. I just thought she had nutritional problems and that she wasn’t learning because she had to use so much of her energy just to stay alive.”

Indeed, by 10 months of age, Josifaye had begun to grow out of her reflux problems but was still delayed in speech and motor skills. Alesha, waiting for TEFRA funding paperwork to secure the therapy services for which Josifaye now qualified, was taught some exercises to use at home with Josifaye in the interim to improve her mobility and language skills.

A few months later, Alesha received the needed funding, and Josifaye was enrolled in speech, occupational and physical therapy, as well as the full-time ACCESS toddler developmental day treatment program.

“At that time, she could only say ‘Da-da’ and ‘ball,’” said Alesha.

Six weeks into the day treatment program, Josifaye said “Mama” for the second time in her life.

“She said it, and it was, it was just like: I could stop holding my breath. It was working; whatever they were doing was working,” said Alesha. “I knew they said they could help us, but no one else had been able to, and [those people] all said that, too. It was like magic when we came here. Each little thing was just life-changing for us.”

Josifaye was diagnosed with apraxia shortly after joining the ACCESS toddler class last year. Apraxia is a neurologically based speech disorder characterized by the incapacity to program the positioning of speech muscles for speaking, making sounds and creating the breath support needed for the intentional production of language-based sounds.

Although Josifaye’s fast progress was “an amazing difference,” the tough road to getting help is still fresh in Alesha’s mind.

“I had a specialist tell me, ‘You really need to try harder to be a mom to this child. It would be great if you could try feeding her more often.’ People were telling me I was crazy and overbearing and expecting too much. People would say, ‘She’s fine.’ I was told, ‘Some kids aren’t as bright as others.’ Another person told me that Josifaye was ‘way too pretty to have problems,’ like being cute is related to autism or cancer or anything like that. I had the Baby’s First Year book. I had to stop reading it because I would cry,” Alesha recalled. “To be honest, work time was a relief for me during that period, and, at any rate, I had to keep working to keep my insurance before the TEFRA funding kicked in.”

The Whites received support and encouragement from Alesha’s parents, Don and Ruth Presley.

 “The best thing my mom did for me during the whole thing was tell me, ‘God gave her to you. There is a reason He gave her to you.’ She talked me through it and said, ‘You’re going to make it through this.’

 “Some people who really should’ve been there for us discouraged us to get help. After I got the diagnosis, I printed out research and shared it with all the doubters,” Alesha said. “Don’t discourage. It’s amazing what early intervention can do. If you get started early, you can really change outcomes.”

Now, at 2 1/2, Josifaye is “a force to be reckoned with.

“We have conversations; she has her own ideas. The transformation is unbelievable. People can’t believe she attends a special school; she’s doing exceptionally well,” said Alesha. “She loves to sing and dance. She knows where a conversation is leading. She’s very particular about her shoes, and she talks all the time. She is [Presley, her younger sister’s] therapist: ‘Puppy. Pet the puppy. Say it!’ She wants everyone to repeat her.

“The most touching thing happened to me about a month ago. Josifaye put her hand on my face and told me, 'I happy to see you, Momma.’ ‘I love you’ was great, but she came up with this one all by herself, and it has meant so much to me. I cried. Verbalizing her own thoughts and feelings was a major step above repeating what we tell her to say.”

The ACCESS Point of View

“Josifaye is a great example of what early intervention can accomplish,” said her teacher, Suzanne Carter. “When I first met her, she was nine months old and having difficulty with everything – eating, communicating, playing. Through therapy and preschool at ACCESS, we have seen Josifaye bloom and grow. She has made phenomenal progress; she is talking and having conversations with teachers, peers and her parents. She eats well and plays well with her friends. Her parents have been integral in supporting her and ACCESS by implementing strategies at home.

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Do you know a child that may have symptoms of apraxia or another suspected developmental delay? The ACCESS Evaluation and Resource Center provides comprehensive and thorough developmental, psychological and psycho-educational evaluations and diagnoses for children ages birth to 17. We offer a multidisciplinary approach and a relatively quick admissions process and can help navigate families through state and federal therapy funding processes. ACCESS also offers outpatient pediatric speech, physical and occupational therapy. For more information, contact Beth Rice, admissions coordinator, at 501-217-8600 or bethr@accessschools.org.