: Across The Spectrum: Raising Children With Autism A Challenge Worth Fighting For

"It's too bad we can't build a rollercoaster in our backyard," said Sheila Bluni, the mother of two daughters and one son named Gavin. Gavin has autism, although he is not on the low-functioning end of the disorder.

Bluni, who was raised in Maspeth, took her son to the carnival when he was 3 and noticed that his first rollercoaster ride produced a marked change in his ability and desire to communicate. Even after the ride, he was more calm and talkative and could walk along with his family at an even pace without running or waving his arms.

Now the Bluni family frequents amusement parks, water rides, diving boards and just about anywhere else where Gavin can get the stimulation he needs. "His body craves moving fast," said Bluni, who made the connection between his improved behavior and his disorder right away.

Gavin was initially diagnoses as having PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified) and his parents noticed he had sensory deficit issues, which is a common trait in autism that means the child is particularly sensitive to sensory stimulation.

In Gavin's case, there was an issue with his proprioceptive sense, which is a sense akin to sight, taste, or touch, but is often overlooked. It involves the body's ability to sense it own movement and make subsequent adjustments. For example, if you move your arm, there is a feedback from the muscle that tells your brain that your arm is moving and that pathway can malfunction.

When Gavin's sense of proprioception is properly stimulated, other parts of his brain are more able to function and so he and his sisters are now on the receiving end of some really fun therapy. Of course, the challenges associated with raising a child with autism are daunting and Gavin will always have to struggle and work extra hard to overcome this disability.

A Range Of Challenges
Autism is difficult to define, but it is a social disorder that does not necessarily affect the mental or physical ability of the person, although it often overlaps with other disabilities. Symptoms in children include a lack of eye contact, a difficulty in recognizing or interpreting facial expressions, a lack or delay of language development, no use of non-verbal cues, a lack of imaginary play and an unusually strong need for specific routines.

Rob Roszkowski, who has lived his entire life in Jackson Heights, has been working with special needs children since he was 12. He knew after high school he wanted to be a special education teacher and has had a long and celebrated career in this field for 18 years. He and his wife Fernanda are the parents of a 5-year-old boy with autism named "Ben" (his parents request his real name not be used).

Even with all of his experience with the education system and as an educator, Roszkowski has been involved in a steady stream of confrontations with his child's school over what he feels is the appropriate education his child should be receiving. Ben is very much on the high-functioning part of the autistic spectrum, to the point where during an interview, he answered all questions, joked with his mom and said he wanted to be a teacher.

"You may not know he is autistic," said Fernanda, "but he does have these issues. And when it does happen, lets say at the playground, it can be hard because you have these other parents giving this look, 'Oh my God, that kid is a brat.'"

Ben attends PS 69 and is currently in a CTT (Collaborative Team Teaching) class, which includes both regular and special education students. The school has tried to move him to a special education-only school, but his parents have resisted, saying he has been doing very well in school when given the appropriate program.

Ben has an IQ of over 140 and his parents are worried about his social issues preventing him from fully realizing his mental and academic success.

After Ben hit a girl in his class during a temper tantrum, his parents allege that the school has been trying to remove from the program without due cause. "The most insulting thing a teacher said to me was 'you're forcing his autism on us, go find the appropriate program,'" said Roszkowski. "Like I went to my wife and said, 'honey, lets conceive an autistic child and make this woman's life a living hell.'"

Becoming An Advocate
The saga between the Roszkowskis and their school is a long and complicated story, but it was their persistence and independent research that has helped find appropriate care for their son - or replace those with whom they were dissatisfied. The Roszkowskis keep a thick file with all the pertinent records about their son and they have put in countless hours exploring schools, programs, and professional help. Rob Roszkowski said he cannot imagine how much harder this would be if he hadn't spent the better part of his life working in this system.

"When we found out about the diagnosis, it was a dark time," said Fernanda, "There is a horrible pain - I lost 40 pounds, had panic attacks. You're going through that and no one can help you, not your friends, not schools, not friends, no one. I helped myself. I went online and found other parents and I realized I'm not alone. This whole other world opens up. Someone else went through this and they're all right."

"You know your child; they're not any different after they got the diagnosis," she added.

But autism is real and there is total consensus that intervention is most effective as early as possible. But in seeking care for your child, be prepared for a slew of acronyms and unclear diagnosis. Do not be afraid to get a second opinion.

"Here's something no one tells you," said Fernanda, "From the first day your child enters special education to the last day he leaves special education, it will be a fight."

"Ben is going to be great and go far in life," her husband agreed, "He'll be great in the end of the road, but getting him on the right road is on me."

Still A Child
The Bluni family, like the Roszkowskis and any other parents who have dealt with this challenge, have countless pieces of advice for working with their own child, but they all agree that every case is different.

"We knew he liked swinging high and fast on the swing set, so we were surprised by the rollercoaster and we weren't. We always tried to expose him to as many areas as we can because you never know when something clicks," said Bluni.

"You have to be an advocate. I am not a confrontational person; I don't like to be the center of attention, but for him I have to be," she added. "I will never call him autistic - he's a child with autism. He's not defined by it. Underneath all this autism and all of that, there's a good-hearted kid there who just learns differently from us."

Walk For Autism
Walk Now For Autism, the nation’s largest autism walk program, scheduled a fundraising event for the month of October in Long Island.

The grassroots organization has already raised more than $100,000 for the New York event, scheduled to take place at Jones Beach State Park.

Walks are held across the nation as well as in Canada and the United Kingdom. To date, the organization, now operating in its tenth anniversary, has raised over $12 million during walks which will be used to raise money for autism research and awareness about the disorder.

The New York event, scheduled to begin Oct. 4 at 9 a.m. and end at 1 p.m., will include a community resource fair, children’s events and refreshments.

The largest amounts the organization has received in 2009 were in Los Angeles and Chicago. The two events totaled more than $2 million. A detailed list of walks, as well as information about how to get involved can be found at WalkNowForAutism.org.
—Marvin Anderson

Autism Resources
AHRC New York City
83 Maiden Lane
New York, NY 10038
(212) 780-4491
ahrcnyc.org/

The Organization for Autism Spectrum Information & Support, Inc. (OASIS)
oasisautism.org

NYC Department of Education
Office of Special Education Initiatives
Linda Wernikoff, Executive Director
LWernik@schools.nyc.gov

Office of Special Education School Improvement
Lynn Kandrac, Director
LKandrac@schools.nyc.gov

Autism Speaks
2 Park Avenue
11th Floor
New York, NY 10016
(212) 252-8584
contactus@autismspeaks.org

National Institute of Child Health and Human Development
Information Resource Center
P.O. Box 3006
Rockville, MD 20847
(800) 370-2943
NICHDInformationResourceCenter@mail.nih.gov
nichd.nih.gov/

New York Families for Autistic Children
95-16 Pitkin Avenue
Ozone Park, NY 11417
(718) 641-3441
nyfac.org

Autism Society of America
7910 Woodmont Avenue, Suite 300
Bethesda, Maryland 20814-3067
(800) 3AUTISM
autism-society.org

Helpful Links
Autism Resources
autism-resources.com/

Autism Today
autismtoday.com/

Talk Autism
talkautism.com/

Foundation for Autism Information & Research, Inc.
autismmedia.org/