A mother from Guelph, Ont., says her four-year-old son needs specialized therapy for a rare neurological condition that provincial health care doesn’t fully cover, forcing her to seek other ways to pay for his treatment.
Elaine Goldberg shares that her son, Jayce, is bursting with ideas, curiosity, and personality, but childhood apraxia of speech makes it hard for him to communicate.
“His brain knows what to say,” Goldberg said. “But his mouth doesn’t know what to say.”
Childhood apraxia of speech is a motor speech disorder impacting how the brain organizes and coordinates the movements required for talking. Goldberg first noticed something was off when Jayce was an infant because he didn’t babble.
“He wouldn’t make really any noises,” she said.
By the time he turned one year old, Jayce was lagging behind on developmental milestones. He received his diagnosis at age three.
Goldberg mentions that her son comprehends everything around him but struggles with verbal responses.
According to Goldberg, the Ontario Health Insurance Plan (OHIP) does not fund private speech therapy. Currently, Jayce attends two sessions each week with a speech-language pathologist at just over $100 per session.
Jayce is also receiving publicly funded speech therapy through Kids Ability, an organization in Waterloo region and Guelph that offers pediatric rehabilitation programs and services for children with disabilities and developmental delays.
However, Goldberg notes this support will end in September as Jayce will age out of the program.
With additional therapy necessary to take over from what Kids Ability currently provides, she’s worried about how they’ll afford it all.
“When I found out we were going to have to pay, I panicked,” Goldberg said. “It’s expensive. And you’re thinking, how are we going to afford to get him what he needs?”
The reached out to Ontario’s Ministry of Health regarding why Jayce’s speech therapy isn’t covered by OHIP but did not receive a response before publication.
“If we don’t get him what he needs, he’s not going to succeed,” Goldberg said. “He’s going to be stuck as a child who doesn’t know how to communicate.”
Jayce communicates using gestures along with spoken words. He frequently points at things around the house while using simple signs and visual cues for basic needs like food or drink. He can say a few words too; however they’re still not consistent or always clear enough for others......
Gold b erg s ay s these methods fall short when it comes t o more complex ideas. She fears that as Jay ce gets older , he’ll have more thoughts but won ‘ t be able t o share them. “You can see it in his face ,” she said. “Sometimes he just breaks down and starts crying because he’s trying so hard t o tell us something.”Therapy That Comes With A Price Tag Gold berg emphasizes that Jay ce needs continuous support t o develop an d maintain his speaking skills. ” It is such an intensive therapy schedule that’s going t o go on f or years ,” she noted. Working w ith Rea , J ay ce receives focused motor-based therapy. Rea mentions this frequent repetition is crucial f or children w ith apraxia since they need t o practice specific mouth an d tongue movements regularly. ” Over time , we’re providing lots of support t o help them scaffold those movements , then slowly reducing those cues so they can do i t independently ,” Rea explained. She adds that Ja y ce has made steady progress over th e past year-and-a-half , including improved airflow control leading t o clearer spee ch an d recognizing incorrect sounds or words better. According t o Rea , J ay ce will continue needing more overall therapy than any single provider or public system can offer. Children w ith apraxia typically require multiple weekly sessions over several years since speaking is a motor skill needing constant reinforcement. A Voice For J ay ce The financial strain prompted Gold berg t o organize a fundraiser aimed at covering ongoing th erapy expenses. The family-friendly event titled A Voice for Jayce will take place Saturday from 2 PM until 5 PM at Elora Road Christian Fellowship in Guelph featuring games , face painting , an d various fun activities. Goldberg hopes this event raises awareness about apraxia because it’s often misunderstood. “A lot of people think he’ll talk when he’s ready or that he’s choosing not t o,” she said. ” But he can’t. His brain struggles sending those signals.” The community response has been amazing so far according tothe mom. “I felt very alone initially,” she shared “But they’ve been incredibly supportive.” “We’ll do whatever we can help our little boy learn how communicat e.”
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‘He’s trying so hard to tell us something’
Brooke Rea, a speech-language pathologist and owner of the Childhood Apraxia and Speech Therapy Centre in Guelph, is currently providing therapy for Jayce. She explains that kids with apraxia understand language well and often know exactly what they want to express but struggle with coordinating precise tongue, lip, and jaw movements needed for clear sounds. “They are very intelligent,” she said. “Unfortunately, the way their speech comes out can make them sound quite unintelligent.” Speech-language pathologist Brooke Rea is the owner of the Childhood Apraxia and Speech Therapy Centre in Guelph. She has been working with Jayce for over a year. (Submitted by Brooke Rea) This condition is quite rare; it affects roughly one or two children per 1,000.Jayce communicates using gestures along with spoken words. He frequently points at things around the house while using simple signs and visual cues for basic needs like food or drink. He can say a few words too; however they’re still not consistent or always clear enough for others......
Gold b erg s ay s these methods fall short when it comes t o more complex ideas. She fears that as Jay ce gets older , he’ll have more thoughts but won ‘ t be able t o share them. “You can see it in his face ,” she said. “Sometimes he just breaks down and starts crying because he’s trying so hard t o tell us something.”Therapy That Comes With A Price Tag Gold berg emphasizes that Jay ce needs continuous support t o develop an d maintain his speaking skills. ” It is such an intensive therapy schedule that’s going t o go on f or years ,” she noted. Working w ith Rea , J ay ce receives focused motor-based therapy. Rea mentions this frequent repetition is crucial f or children w ith apraxia since they need t o practice specific mouth an d tongue movements regularly. ” Over time , we’re providing lots of support t o help them scaffold those movements , then slowly reducing those cues so they can do i t independently ,” Rea explained. She adds that Ja y ce has made steady progress over th e past year-and-a-half , including improved airflow control leading t o clearer spee ch an d recognizing incorrect sounds or words better. According t o Rea , J ay ce will continue needing more overall therapy than any single provider or public system can offer. Children w ith apraxia typically require multiple weekly sessions over several years since speaking is a motor skill needing constant reinforcement. A Voice For J ay ce The financial strain prompted Gold berg t o organize a fundraiser aimed at covering ongoing th erapy expenses. The family-friendly event titled A Voice for Jayce will take place Saturday from 2 PM until 5 PM at Elora Road Christian Fellowship in Guelph featuring games , face painting , an d various fun activities. Goldberg hopes this event raises awareness about apraxia because it’s often misunderstood. “A lot of people think he’ll talk when he’s ready or that he’s choosing not t o,” she said. ” But he can’t. His brain struggles sending those signals.” The community response has been amazing so far according tothe mom. “I felt very alone initially,” she shared “But they’ve been incredibly supportive.” “We’ll do whatever we can help our little boy learn how communicat e.”
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