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Sunday, 29 November -0001 19:03

Out of the Shadows: Families Dealing with Autism Find Answers in Capital Region

SARATOGA SPRINGS - When Madison Scirocco was 15 months old, her mother, Heather, was still waiting for her baby daughter to make her first sounds. With the exception of limited signing, Madison was non-communicative. As a new mother, Scirocco wasn’t sure what was wrong, but she knew something wasn’t right.

 

“No one knows your kids as well as you do,” said Scirocco. “My best advice to other parents is to keep going until someone helps you. Don’t take ‘no’ for an answer. You will breathe easier when you feel understood and know there are others on your side. I would never want to change my children, but part of my job as a mom is to make sure they will be able to hug family, make friends and live in society.”

Scirocco would later learn that not only did her daughter’s condition qualify as autism, but also her son, Vince, would grow to display symptoms of the disorder.

The Centers for Disease Control and Prevention has recently upgraded their previous estimates from one in 110 to one in 88 children identified with an Autism Spectrum Disorder (ASD). Almost five times as many boys were identified with ASDs than girls, according to estimates from their Autism and Developmental Disabilities Monitoring (ADDM) Network. This startling figure, combined with the fact that April is National Autism Awareness Month, highlights the need to keep this issue in the public discussion.

In an effort to generate community support, local entities are coming together. ASPIRe NY, Skidmore College Psychology Department, The Parent Network of the Capital Region and Saratoga Bridges, in cooperation with Senator Roy McDonald, will present the First Annual Autism Information Fair and Carnival Sunday, April 29 at the Skidmore College Intramural Gymnasium, located at 815 North Broadway, Saratoga Springs from noon – 4 p.m.

ASPIRe decided to hold the fair when they received more and more phone calls from families in the dark about resources available to them. The fair will be a one-stop-shop for families as exhibitors, resources, services and contact people are brought together. Psychology students at Skidmore will be on hand to man carnival activities, bounce houses, games and arts and crafts; but there will also be a quiet corner with activities for children who need it.

Debbie Garrelts and Julie Marks co-founded ASPIRe in 2005, both having not only extensive professional training in the fields of health and education, but also the experience of parenting autistic children. ASPIRe serves over 50 individuals with developmental disabilities which begin before the age of 21 and continue throughout their lives.

“We go out; we have initiatives, trips and activities, many things for teens and young adults to do,” said Marks.

ASPIRe continues to constantly expand the number of those they help, and the numbers of those joining the organization rises every month. ASPIRe has a financial partnership with Saratoga Bridges, and it is through their generosity of gifts from office space to resources, that families and individuals are being served from Coxsackie to Warrensburg.

Similarly in line with those initiatives, the mission of the Parent Network of the Capital Region (PNCR) is to provide parents with the knowledge, skills, resources and support to effectively advocate for their children. They are facilitating productive relationships between parents and school districts for the benefit of students with disabilities, offering services to parents, service providers, disability organizations and schools.

“All of the training and workshops we offer are free for 13 counties. Our main goal is to help educate and empower parents to work collaboratively with the school districts,” said Mary Fornabia of PNCR.    

Because of autism, Heather takes extra measures every day with her family. She must do what she refers to as her “pre-setting,” that is, preparing her children’s minds and expectations before placing them in new settings. This can become a challenge even when doing something as normal as taking them to the circus.

“That was a huge deal. I pulled up a video of the circus for weeks leading up to the event to show Madison and brought a special chair that Vince would stay in.”

Back when Madison was a baby, less was known about ASDs. Luckily, Scirocco was able to take advantage of those resources she did find, which has made all the difference in her daughter.

“The first pediatrician we had said that my baby was a just a ‘late bloomer.’ I researched and came about the diagnosis on my own. Then I got a new pediatrician,” said Scirocco.

“I also contacted Autism Speaks and they recommended Madison’s speech be analyzed. Then the Early Intervention Program through Saratoga County provided services for the whole family to be trained as caregivers in my home. Speech therapist Nancy Gratton was instrumental in both children’s advancements. Gratton began working with Madison at age 22 months and she finally said her first words at a little over 2 years.

Funding has been cut for the Early Intervention Program twice in one year. Scirocco began circulating a petition and joined a writing campaign to thwart the state funding cuts. In her view, cutting the funding was short-sighted, and would lead to higher costs down the road.

Senator Roy McDonald has worked with his colleagues in the legislature through hosting forums locally and across that state where experts, advocates and family members who have a loved one with autism are given the opportunity to share their thoughts and ideas on providing the best care. These events generate media coverage and local interest to raise awareness.

“Last legislative session, Senator McDonald was proud to introduce legislation that guaranteed insurance companies would cover the costs of diagnosis and treatment of autism. This care was routinely denied in past practices. The bill passed both houses of the legislature and was signed into law by Governor Cuomo,” said Mike Veitch, spokesperson for Senator McDonald.

“I’m ashamed to admit that before my grandsons were diagnosed, I knew hardly anything about autism,” said Senator McDonald. “But with the frequency of diagnosis rising at astonishing levels, it’s become a significant part in many of our lives. It’s our responsibility in government to provide for the most vulnerable population of people, and individuals with autism need to receive adequate care along with opportunities so they are able to accomplish much in their lifetimes.”

Professionals agree on the importance of intervening early on for children with developmental disabilities.

“Screening and accurate diagnosis are important for any developmental disability, but especially for autism since it’s a spectrum disorder with deficits in three core areas: social interaction, communication, and repetitive and stereotyped behavior,” said Kristin V. Christodulu, Ph.D. Director of the Center for Autism and Related Disabilities. “There is no medical test to diagnose autism, but there are experts in the field who use autism-specific interviews and observations as part of a comprehensive diagnostic evaluation. Regarding treatment, early intervention can greatly improve outcomes for children with autism, and matching evidence-based interventions to individual child needs is essential.”

Thanks to the help of countless individuals and organizations, Scirocco is pleased to report the huge strides her daughter has made.

“Madison is academically amazing. She is now on her way to a gifted accelerated program.”

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