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Connecting the special services circuits
Often overlooked, Staten Island's tiny state-funded Early Childhood Direction Center gets a big thumbs-up from parents with special-needs children who've sought their help
Tuesday, May 10, 2005
By TAMARA VALLES
STATEN ISLAND ADVANCE
It's natural for expectant parents to be filled with lofty dreams regarding their child's future. They imagine he will be strong, healthy and vibrant, that she will soar to outrageous heights, and live a life far greater than their own. For many families, those dreams become reality -- but for other parents who have kids with special needs, life doesn't turn out exactly as planned.
The good news for Staten Island families is that dealing with a set of changed circumstances needn't be a solo effort. Help -- free, confidential, neutral and based on the most current data available -- is at hand via a little known group in Clifton called the Early Childhood Direction Center (ECDC). Their expertise is just a phone call away.
New Dorp resident Jacqueline Marks is the mother of 3-year-old triplets, Jacob, Dylan and Tyler, each of whom have special needs. Jacob has autism, a mood disorder and behavioral disturbances; Dylan suffers from autism and behavioral disturbances; and Tyler has autism, cerebral palsy, apraxia (a motor disorder), a seizure disorder and benign congenital hypotonia (a condition of low muscle tone.)
Faced with such a wide array of medical and emotional issues, one might think that the dreams Jacqueline and her husband, Aaron, had envisioned for these beautiful boys faded the minute the diagnoses were confirmed. Instead, thanks to the ECDC, their dreams simply shifted in a different direction.
The center, sponsored by Staten Island University Hospital, Ocean Breeze, is one of 15 throughout the city and state established by the state Education Department. Each provides information on -- and referrals to -- programs and services for children under age 5 with special needs (difficulty talking, moving, thinking, learning, interacting and/or behaving) or a suspected developmental delay. They also run free workshops for parents, professionals and community members on such topics as Early Intervention Services (birth-age 3) and Preschool Special Education (age 3-5).
"Many parents are afraid to reach out, but they don't have to suffer alone. We're here to help them begin the evaluation process and to match a child's needs with available services, if that's what a parent wants. There's still some fear about labels ... but the child comes first, the disability, second," said ECDC director Laura Kennedy, whose daughter, Julia, 22, has a developmental disability. "The key is to call as early as possible." (Research has shown that the earlier a child gets help, the more likely he/she will be able to reach his/her full potential.)
Mrs. Marks attests that these words reflect the staff's heartfelt commitment to ease parents' anxiety and confusion.
"It's devastating to hear one of your children has a disability, but all three? ... It was a blow. We walked around asking, 'Why me?' We wondered if they'd ever talk and walk, but Laura (Kennedy) and Kathy (Nowak, parent education coordinator) went above and beyond to give me information, to calm me, to encourage me to be a self-advocate and to know my rights," she said. "I can't count how many hours they dedicated to me. They have such vast knowledge, and without them, I wouldn't be where I am today with my children's education."
Where she is today is a brighter place. With speech, physical and occupational therapies, applied behavior analysis, and a special education itinerant teacher who comes to the home, the Marks brothers are making slow progress: Dylan is talking, Tyler is walking and Jacob is interacting more with others. They're also adjusting to pre-school at PS 37, Great Kills, where, with the help of Mrs. Kennedy, Mrs. Marks established the first verbal behavior program in the borough.
True, the Marks' do not have an easy life. With "parenting on the back burner," they must concentrate their time and energies on being teachers and caregivers, as their kids cannot take baths, get dressed or brush their teeth by themselves.
"They're not cured. There's a long way to go, but thanks to (the ECDC) my kids have been given the stepping stones to a functional life," Mrs. Marks concluded. "I try to keep a very positive outlook. I expect them to go to school and college. I will do everything possible to give them that opportunity. Yes, our whole world was turned upside down, but over the years, I've learned a lot. It's something you adjust to."
The ECDC staff spend innumerable hours empowering families like the Marks' with the tools necessary to make good decisions. It's time that other professionals simply do not have.
They are modest about their individual accomplishments, still they beam with pride when noting that the Island center, now celebrating its 15th year, has linked over 8,000 children, representing all racial, religious and socioeconomic backgrounds, with needed services, all at no charge.
Lisa Schmidt of Dongan Hills feels "fortunate" that her son, James, 5, diagnosed with a speech delay at age 2, is among those who have benefited. Like so many others, she stresses that the center, the proverbial spoke in the wheel of services, gave her family the invaluable gifts of guidance and knowledge.
"It's upsetting to hear something is wrong with your child, even if it's minor, because you want your child to be perfect. It's overwhelming, but (the ECDC) was there to help me through the paperwork, to put me in touch with therapists, to talk. They support you in every way," she explained. "They hold a lot of meetings where you meet others in the same situation. You can talk to your friends and family, but it's so nice to be able to talk to other parents who are going through the same thing."
Thanks to the help he received, Ms. Schmidt is thrilled to report that James is doing "great," and will start kindergarten at St. Ann's School, Dongan Hills, in the fall.
MORE OPTIONS NOW
There weren't always so many options available for parents of special-needs kids. In fact, although Mrs. Kennedy, a 2000 Advance Woman of Achievement, eventually got her daughter the services she required, she initially had a tough time seeking help.
"I had no direction, so I had to do the phone-book walk. That's why my job is rewarding every day. I know what it's like ... Our mission is so broad and there's only six of us on staff, but we have varied talents and it's amazing how much we can do one-on-one to take the fear and mystery out of what can be an overwhelming process."
Mrs. Nowak, whose son Michael, 15, has a developmental disability, agrees that her work, emotionally-taxing at times, lifts her spirit at every turn. "Parents are so grateful. They're always saying 'Thank you.' I can't begin to describe how that feels."
Denise Coppola of Arden Heights, the mother of Isabella, who turns 3 next week and is developmentally-delayed, is one who can't express enough gratitude. "It's one thing to be a great source of information, which they are, but Laura and Kathy also have that reassuring voice. You know they're listening," she said. "They're lovely people who've been phenomenal to me."
No wonder one social worker likened this precious resource to "a hug over the phone." tail Tamara Valles is a Lifestyle reporter at the Staten Island Advance. She can be reached at valles@siadvance.com.
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Wonderful article Jackie! Thanks so much for sharing with us.
Renee