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August 20, 2014
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Parents of Children with Special Needs Pave Their Own Road

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At age 3, Heather Masso’s daughter Everley had a small core of words that she could say clearly. Any other communication from Everley was a series of “n” sounds strung together. Masso thought Everley would grow out of the speech problem, but there was a day when Masso was struck with the realization that Everley might not “grow out of it.”

“Last September, I was jogging by Café Ole and saw several people enjoying lunch on the patio,” Masso said. “My heart broke into many pieces at the thought that my baby may never be able to enjoy a conversation with a friend over lunch. It was a feeling I can’t explain. I’ve never felt more scared and alone. I wish I had known what I was facing.”

While the situation may be different, Masso’s emotional response to her daughter’s disability is familiar to parents of children with special needs. Some parents find out while their child is still in the womb, while some won’t realize something is going on until their child misses a developmental milestone. Whenever the time of diagnosis, parents of children with special needs work hard to find a team of support professionals and a supportive parent group to make their experience as parents easier and their child’s life as full as possible.

Across Oklahoma, almost 100,000 children with disabilities returned to school this fall. In this group, no two children are the same—some board the bus with all the other children and receive little to no special accommodation during school, and some go to school with a special aide who helps them through the day. No matter the needs of their child, parents across Tulsa are striving to provide the best and most comfortable life possible for their special needs child.

“I don’t think it’s all that different from a child without disabilities,” said Judy Berry, psychology professor from the University of Tulsa and author of “Lifespan Perspectives on the Family and Disability.” “You want them to be safe, healthy and happy. You want them to learn and grow, so the goals are across the board the same, you’re just going to need more help and support to achieve them.”

 

LOCATING RESOURCES

Finding the right resources for her daughter was a difficult process for Masso.  Last October, Everley was diagnosed with Apraxia, a speech difficulty that doesn’t respond to traditional speech therapy.

“The key is finding a therapist that knows how to work with Apraxia,” Masso said. “I had her evaluated at St. John’s Hospital and Scottish Rites last year. Everley immediately started therapy at Scottish Rite Language Center once a week. I have seen her confidence rise as her speech has progressed. Her speech is intelligible to most now, but there is definitely more therapy in her future.”

According to the Archive of Pediatric Adolescent Medicine, approximately 13 percent of children have a developmental disability, “ranging from mild disabilities such as speech and language impairments to more serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism.”

The first step for many Oklahoma parents after their child is diagnosed is to get in contact with Sooner Start, the state’s program for infants and toddlers with disabilities and developmental delays. Most parents are referred to the program by their child’s primary care physician, who notices a child has missed a developmental milestone, such as speaking or walking. 

 “Sometimes physicians send kids for testing, but one issue we want to get even more involved in is early recognition,” said Sherilyn Walton, a family support coordinator at TARC. “Really the physician that sees the child is the most able to do that.”

When a child has a disability that is detectable at birth, parents will be linked immediately with social workers and programs like Sooner Start. The problem families sometimes run into is that their child is not diagnosed at birth, however, and physicians don’t realize something is wrong until later in their life.

“If [parents] feel like there is a developmental issue, the first step would be to call Sooner Start and then also [TARC has] the information,” Walton said. “A good place to start also is 211,” which is a resource hotline run by the state that parents can call for counsel and direction on where to go for testing and resources.

Once parents are connected with these primary resources, they can begin to find specific doctors, therapists and services that fit the individual needs of their child. This is also the point where resources such as TARC and disability-specific centers come in to assist parents and support them.

 

AVOIDING ISOLATION

Many parents may feel like they are trapped at home when raising a special-needs child, as going out in the community is much more difficult than it would be with a non-special-needs child.

“Isolation is definitely a problem, but it’s not the parents,” Berry said. “They’re isolated because it’s difficult to get babysitters, it’s difficult to be a part of a childcare center that knows how to handle and manage children with disabilities, and a lot of churches aren’t very accepting about having a child with disabilities in nurseries. A number of parents will tell you they would love to not be isolated, but they don’t have a means to be involved in the community.”

“It has helped having other moms to talk to when you’re going through the emotional rollercoaster.”

Berry said over the last 10 years there has been some progress as agencies and churches across the area are beginning to realize and address the need for respite care for children with special needs, but the problem is nowhere near solved.

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