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A Knotty Problem

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For a parent, there is perhaps nothing worse than the feeling that something just isn’t right with your child. When the problem is a developmental disability, it can be especially tough to diagnose and treat.

Carroll Grant, who has a Ph.D. in special education, has spent most of her professional career addressing such issues. As director of the Margaret L. Williams Developmental Evaluation Center in Syracuse, she tries to make the process of evaluating children a bit less uncertain.

“It really is important that parents and the clinicians involved in diagnosing a developmental disability have a collaborative relationship,” says Grant, who has four grown children. “Parents need to feel comfortable working with us, and we need them to share what they know about their child. We want to see, hear and feel all the things that the family does.”

The center evaluates children as old as 8 who are suspected of having one or more significant delays in their physical or mental development. Parents contact the center themselves, or a teacher or other professional refers a child with a suspected delay. (Parents must grant permission for referrals initiated outside the child’s home.)

Center staff review the child’s medical and developmental history, then the family takes part in an assessment. For many, this is a daylong process, during which the child is evaluated by a physician, a psychologist, a speech pathologist, a physical therapist and an occupational therapist. These professionals discuss their impressions with the child’s parents all through the assessment, and the parents are encouraged to ask as many questions as they wish. At the end of the day, the team prepares a preliminary evaluation, findings and suggestions for services with the parents or guardians. A full written report, based in part on a computerized scoring system, follows within two or three weeks. If they wish, parents can get help in deciding what services would best suit their child.

For the child, Grant says, the assessment is “a day spent doing fun things with some really nice people.” The assessment rooms are so inviting, the children often need little encouragement to participate.

Grant is dedicated to helping families get the resources they need. She chooses the clinicians and support staff with great care. Grant says her goal with the center, established in 1982 as a partnership between Upstate Medical University and the Onondaga County Office of Mental Retardation and Developmental Disabilities, has always been to have as many resources as possible together in one place. Ninety percent of the work done at the center is diagnostic; the rest is outreach and education—directing families to appropriate resources that can help children manage behaviors and get the most out of their evaluations, which look at motor, speech, cognitive, sensory and social development.

“About half of the families who contact us know that something is wrong,” Grant says. “But the unknown is stressful no matter what. Nobody wants to hear that their child has a lifelong problem. The goal with these assessments is we come up with an approach that helps kids in the areas where there are deficiencies, and helps them to use their gifts.”

Other families are unsure of how concerned they need to be about a behavior or set of behaviors they notice in their children. For them, the center offers a First Look program, in which a staff member may be sent to the child’s home, school or day care center to make a preliminary assessment.

Grant, with 25 years of experience studying developmental disorders, and her center’s staff are in high demand these days. There is a four- to six-month wait for families seeking evaluations. Of those the center does evaluate, about 40 percent are considered on the autism spectrum. Others have unidentified developmental delays from unknown causes.

“There are more children developing problems such as autism spectrum disorders,” Grant says. “I just think there are more kids. But it’s also true that the evaluation process has gotten much better, so it’s created awareness about these issues that parents did not have 25 years ago.”

Grant closely follows research that aims to determine the reasons for the increase in developmental disorders like those on the autism spectrum. Genetic factors and predispositions seem to be the most common aspect, Grant says. “Researchers are currently looking at environmental factors,” she adds.

While the causes are not obvious, Grant says there is general agreement among her peers that the treatment of developmental disabilities needs to be “early and intense. Although behavioral intervention can be very helpful, thus far there is no treatment that addresses the core issues that cause these disabilities.” Grant says this is perhaps the most frustrating aspect of her work; there simply are very few definite answers.

Families in Onondaga County have more options for services than people in many other areas of the country. Grant says this makes coordinating multiple resources easier. Since 1989, the federal government has provided funding to states that offer special education services, and families can have evaluations for children under 3 paid for through the county Department of Health. (Children over age 3 are evaluated through their school district.)

To help trickle awareness into the local school communities, Grant developed KidSpeak, a puppet workshop on autism and Asperger syndrome that has been held at various elementary schools in the Central New York area. Directed by members of Syracuse’s Open Hand Theater, the workshop addresses autism spectrum disorders in a gentle, positive manner that encourages young children to think about friendships, individuality, and their own place in an inclusive environment.
Although the problems of addressing developmental disorders are complex, Grant takes solace in knowing the center’s information can help improve children’s quality of life.

“It is hard not to think about all the families that are still hurting—those we can’t help, but the work we do here is meaningful,” Grant says. “Our community is very supportive and that’s very rewarding,  too.”                                                       

Award-winning writer Tammy DiDomenico lives in DeWitt with her husband and two sons.

© Family Times: The Parenting Guide of Central New York