Parenting Children with Special Needs
Brenda Biernat's son, Jasper, was just five hours old when the seizures began. Jasper was born by cesarean section after a long and difficult labor. Now, when the boy was less than half-a-day old, doctors were performing a battery of tests, including MRIs, to determine why he was having seizures. The diagnosis: Jasper had suffered a stroke at birth in his occipital lobe, with flashes in other areas of his brain. The occipital lobe is the vision center, doctors explained to Biernat.
Nine days later, Jasper was diagnosed with cortical blindness - not truly blind, but severely visually impaired. Glasses won't help, doctors explained, because the damage is in the brain - not the shape of the eye. Instead, Jasper would require medical attention, therapy and a very special parent to help him grow and thrive.
Jasper is one of more than 6 million special needs children in the United States today. The U.S. government estimates that one of every 10 children under the age of 14 has some type of special need, defined as any physical, cognitive or medical disability, or chronic or life-threatening illness. These include children with Autism Spectrum disorders, developmental delays, speech or feeding issues as well as children with blindness or visual impairments like Jasper. Other diagnoses include behavioral or mental health issues, premature birth, sensory issues and learning disabilities.
Caring for a special needs child adds a unique set of challenges, stresses and emotions to the already challenging role of parenting. Raising a special needs child can also be a joyful, fulfilling experience. It begins with the diagnosis.
Identifying a special needs child
Special needs children are identified in a variety of ways. Children with genetic issues such as Down syndrome are typically identified at or shortly after birth. Other issues, including autism, are identified and/or diagnosed in part based on childhood development.
Some children may show early signs of an issue, but go undiagnosed. Melodie Moore of Burleson, Texas, knew something was wrong with her son, Austin, when he was just a few years old. He was acting out in ways his older sister never did - but doctors dismissed it as boyish behavior. Moore had a relative in the school district who suggested she have him tested for developmental issues. He was diagnosed at age 3 as a child with autism.
Parents are in the best position to know if a child is achieving major developmental milestones such as babbling, crawling, talking and walking. First-time parents may not know what the milestones are or when they should occur, however. As a result, children may go untreated for the first several years of their lives.
"Many kids, especially those with high-functioning autism, don't get diagnosed until they are older and having difficulty in school," says Alicia Kollmar, a licensed occupational therapist who works with special needs kids in North Carolina. "Physicians are often not educated about special needs if there aren't medical issues as well - and they aren't likely to see the issues in a brief office visit."
It is often the teachers, special educators, speech-language pathologists, occupational therapists and physical therapists who identify children that may have a developmental issue. Once identified, the children are referred to specialists who will perform a series of tests to formally diagnose the specific issue.
In the event of a diagnosis, parents can expect referrals to various specialists that may include a developmental expert, speech therapist, occupational therapist and/or physical therapist. These professionals may meet with the child individually or as a team. Parents will then meet with them to discuss the evaluations and recommendations.
The experience can be very intimidating for parents, Kollmar says, as specialists may use jargon that confuses and possibly scares parents. Therefore, it's important to ask questions during the consultation.
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