News and Knowledge

Our son, Alex, is a happy 12-year-old boy who is beginning his fifth year of transitioning into our school district. Helping their children with autism make the transition to a neurotypical world is exactly what most parents have been trying to do since they got the diagnosis of autism.

For us, it began with trying to understand what had happened to our typically developing 18-month-old. As his language deteriorated from two-word sentences to grunts and screams, we began speech sessions with him at 20 months of age. When he was two, we found out that he had autism. When he was three, he began to regain a limited and very stuttered speech. Between the time he was 18 months until he turned three, we pursued all the diagnostic tests and evaluations. That is also when we realized that our education and skills as a New York City police officer and a clinical nurse respectively had not prepared us for what we would need to do to obtain services for our child. Both of us were working full-time so that we could purchase our first home on Long Island, and we were awaiting the birth of our second child.

From an educational standpoint, we had always believed that a structured child-care center would provide an environment that was stimulating for learning. Alex started at the Tutor Time Center when he was two but before he was diagnosed. He stayed at the center until he was five. The staff was helpful as we set up some basic communication signs and prompts. We also spent time teaching Alex the social rules of the setting (e. g., no trashing of the bookcases). Alex learned to model his peers regarding group activities such as lining up against the yellow wall before playground time. He also learned to eat what was on the lunch menu. Thinking back, we guess we were pretty bold in sending a child with such a disability to a setting with 20 children and five teachers, but even in that environment our child learned. Although his rate of speech acquisition clearly did not improve until he began to receive one-on-one and then center-based training, he began to understand that he could model his peers and follow rules of behavior.

As parents, we went to a lot of training to understand how we could teach our child. Before long, we were attending applied behavior analysis (ABA) conferences on a regular basis. As a nurse, Nancy was amazed at how many parents attended conferences that were meant for professionals. That was when we realized how the autism crisis would be addressed: by the joining of parents and professionals in the passion for a cure.

Beginning with ABA

On Alex’s fourth birthday, our family hit the lottery. That is, our son entered one of the only ABA-based programs for children with autism on Long Island. Established in 1993, the Martin C. Barell School (which was named for the Board of Regents Chancellor who advocated for the program) was started, as most schools of this kind usually are, by a group of parents who fundraised and lobbied to open the doors for their eight children. The school is part of Nassau Suffolk Services for Autism, an agency that currently serves many families throughout Long Island by providing education, job-training, consultation, adult services, and respite. The school, a year-round highly structured program, has a teacher-to-student ratio of 1 to 1.5.

When we first placed Alex in Barell, which was not part of the school district, it was difficult to explain to others, including educators and school superintendents, why such an educational program was necessary for our child. Until, that is, Alex began to speak short sentences. He was being taught the prerequisites to learning, including the ability to attend and to model. His teachers reinforced those behaviors, first with edibles, then toys, and then tokens. (Now, whenever he seeks reinforcement, he usually receives a “thumbs up” and a smile.) During his full-time placement at Barell, Alex learned to follow directions, match, and read (first by sight and then phonetically) as well as how to tie his shoes, ride a bike, rollerblade, and use a public restroom. These life and social skills could never be taught at a district program.

An intense program like the one at Barell is not without its downside. Alex needed more typical interactions with other children in the community. When he was six, his home programmer at Barell told us that it was time for Alex to join a sport. Was there a soccer team he could join? We were really nervous because we thought he needed to be “fixed” before he could venture out in the community like that. We took what we now refer to as our “leap of faith” and brought autism to this Long Island community. We did not do this alone. Alex’s teacher shadowed him at every practice and developed a behavior plan to keep him on task at the games. The coach was compassionate and interested to learn, and the parents were outstanding. Not once did we ever hear a negative word about why Alex was playing on the team. Instead, they cheered him on; every time he kicked the ball, they yelled his name. Four years later, when he scored his only goal on a penalty kick, parents on both sides cheered him on, and he was proud. That moment will stay with us forever. Although he ended his soccer career when intramurals ended, it was that experience that encouraged us to try baseball, basketball, tae kwon do, and swimming. The community response was consistently one of support. Because of these supportive experiences, we have become so comfortable with his diagnosis that we now assume that people will accept him.

Making the Transition

When a child has this level of disability, teaching and learning needs to take place every hour of every day. It is easy to focus on a challenging goal such as pronoun usage for a prolonged time. How do you decide what to teach next? The academic curriculum is useful for making those decisions, and it provides an academic standard against which we can measure our son’s strengths and weaknesses. Several years ago, he independently took his first vocabulary test in district. He got a 40 percent; we were thrilled. Our son was now capable of participating in the academic as well as life skills curricula.

Barell’s individualized education program (IEP) has also been useful. Each child at Barell follows an IEP and progresses independently with goals set out in the plan. For the past three years, Alex has attended Barell on Mondays and Fridays each week. On Mondays, his teacher can preteach some of the information that will be taught that week in district and work more selectively on language and life skills with him. On Tuesdays, Wednesdays, and Thursdays, Alex’s teacher from Barell shadows Alex as he attends full-day special education classes, which are taught at a 3, 4, 5 grade level, in district. Although Alex’s strength appears to be math, he is also beginning to show improvement in all those subjects that require language arts. During those days that he is in district, the goals are social as well as academic. This real-life setting provides a means to determine how a child would do in a mainstream classroom setting. It also is easier to practice such social rules as not cutting a line to be first. (We remember the days when Alex could not care less where his place was in line. Now he wants to be first and always be the winner. Transitioning into the community through school and sports taught him that as well. Funny, huh? ). On Fridays, he has a chance to review the week’s work and focus on those issues that are more challenging with his teachers at Barell.

We have been pleased with our son’s progress and look forward to furthering his transition to four and then five full days with his shadowing teacher fading as appropriate. Our son continuously amazes us by his capacity to learn and rise to the level of the bar. He has taught us to never sell our expectations for him short and to continue to advocate for a life that is filled with experiences where he can learn and grow to be a contributing member of his community.