Long Beach community focuses on children with a rare disorder

In March, Long Beach residents gathered at the Cabana to recognize and raise money for a little-known disorder, childhood apraxia of speech.

City Councilman Mike Reinhart and City Manager Dan Creighton presented a proclamation formalizing Long Beach’s participation in Apraxia Awareness Day. Nassau County Legislator Pat Mullaney also presented the family of 5-year-old Bobby Sorise, a local boy who has the disorder, with a proclamation.

Now, some seven months later, with the community a bit more familiar with the disorder, Long Beach will hold its first Walk for Apraxia on Saturday, hosted by Apraxia Kids, a nonprofit headquartered in Pittsburgh. The walk will start on the boardwalk outside the Allegria Hotel at 10 a.m.

“I’m going to be at the Apraxia Kids event with my family,” Nicole Kolenda, a pediatric speech language pathologist, said. “Our research group has spoken at Apraxia Kids. This is my life.”

Kolenda is the lead research scientist on an apraxia treatment study at New York University. She worked with Bobby Sorise during an eight-week study about two years ago.

Childhood apraxia of speech makes it difficult for a child to speak, and the disorder affects about 1 in 1,000 children. They know what they want to say, but find it nearly impossible to coordinate the movements of lips, tongue and jaw that are necessary to form the words. Sometimes their limbs are affected as well.

Bobby has had difficulty talking since he was a toddler — unlike his twin brother, Joseph, who speaks normally. He was not, however, initially diagnosed with apraxia, and his mother, Kristi Rook-Sorise, and her husband, David Sorise, had no idea what his problem was. After several tests and studies, including one at Hofstra University, Bobby was finally properly diagnosed.

Since then, Rook-Sorise has wanted to make more people aware of apraxia. She was instrumental in encouraging Long Beach to recognize the disorder in March, and was a driving force behind planning this weekend’s walk.

“It’s all about awareness and helping navigate apraxia, not knowing what it is or knowing what it is,” Rook-Sorise said. “We’re trying to teach the community the signs and symptoms of CAS. The frightening part for me is it’s not so much the under-diagnosis, but for us it was the misdiagnosis.”

Rook-Sorise was initially told that Bobby had a phonological, or speech, delay, not apraxia. There are similarities between the two, but also major differences. With a phonological delay, children can have trouble pronouncing certain sounds. They also develop speech more slowly, but still follow a typical development path, at the same pace as their cognitive skills, according to Apraxia Kids.

Children who have apraxia typically have a large gap between their receptive and expressive abilities. They can understand language, but the ability to respond using language of their own is either deficient or absent. The child knows what he or she wants to say, but can’t say it correctly.

Diagnosis can be difficult, because of the similarity of the disorders.

“The challenge in diagnosis, and this specifically relating to Bobby, is that in many instances, this diagnosis isn’t in a vacuum,” Kolenda explained. “There are other comorbid diagnoses that are co-occurring at the same time that could make it extra confusing to tease out and make the diagnosis. And in a case like Bobby’s, there is also a phonological challenge with him.”

Sometimes people get lucky, and their child is diagnosed early. That was the case for Long Beach’s acting police commissioner, Richard DePalma, and his family. His daughter, Vivian, who will turn 11 on Friday, was diagnosed correctly years ago by her pediatrician. Father and daughter took part in the event in March, and will participate in the walk on Saturday.

“I think it’s great to bring attention to it,” DePalma said. “I’d like to thank Kristi (Rook-Sorise) and her family for all the efforts they’ve made. I think it’s fantastic what she’s doing, bringing attention to it and raising money for the cause. The more attention you bring to this topic, the more help these kids will get.”

Along with the walk, there will be speakers who will help people better understand the disorder, how to recognize it and how to help. Apraxia Kids has been fundraising ahead of the event and, as of press time, had raised just under $16,000. The money will help the organization sustain educational opportunities, financial aid and support for research.

Rook-Sorise said she hoped that increased awareness of the disorder will bring more collaboration between the Long Beach school district and Apraxia Kids, and that there will be more accredited continuing education opportunities to help speech language pathologists diagnose and treat children with apraxia at an early stage.

For more information, to register for the walk or to donate, contact Rook-Sorise at KristiRook10@gmail.com or visit Community.apraxia-kids.org.