When I was a child I always had concerns about my inability to stay focused. I didn’t have any learning disabilities. I could get my school work done, I was just a little disorganized. I had a messy room, things would just distract me.
By adulthood, I started being impulsive. One minute I was going to college, the next minute I wanted to change my major. The next minute, I was going to law school. One minute, I was going to work. The next, I was out spending all kinds of money, which eventually led to filing for bankruptcy. I was making very poor decisions.
After college, I got married. I had kids. But I also was depressed and finally sought help from doctors. I was about 25 when I was finally diagnosed with ADHD, or attention deficit hyperactivity disorder. A combination of medication and counseling changed my life. My symptoms improved within a month.
I separated from my husband in 2004. My son was only a few weeks old and my daughter was not even 1. I became worried about my son because he wouldn’t make eye contact with me. He was an inconsolable baby and everything he did seemed slow. I knew something wasn’t right. I was working on a master’s degree in inclusive education at the time, and I had to make a choice. I stopped going to school and started focusing on him.
When it came time for preschool, my son’s doctor told me to call the school and have him evaluated. I looked at all the information and thought, “How does anybody understand this? Where can I get some help?”
I fumbled through the preschool process. My son was in a classroom with kids who did not have disabilities, but he had about 20 specified goals to try and accomplish. I thought it was a good program.
In kindergarten, kids have to fall into one of the 13 special education categories to get support: autism, deafness, deaf-blindness, orthopedic impairment, learning disability, intellectual disability, multiple disabilities, traumatic brain injury, other health impaired, visual impairment, hearing impairment, speech and language impairment, and emotionally disturbed—the one that irritates me the most.
My son didn’t qualify for services based on his test scores. I worried that he wouldn’t get the help he needed. I looked to the community and found advocacy centers that offered one-day classes in navigating the special education system.
Since my son had not yet been diagnosed with a developmental disability, my options were either to attend these classes and do it myself, or to hire an attorney. I took classes everywhere I could: through Wright’s Law, an online resource of special education law information; the Advocacy Institute; CHADD, a nonprofit whose name stands for Children and Adults with Attention Deficit/Hyperactivity Disorder. Any place.
I found I really liked helping other people, too. I had so much fun thinking of strategies that would help kids. The parents I met at support groups were amazed; they didn’t know they had these rights as part of being an equal team member for special education services. I volunteered my time and met more parents through word of mouth.
I realized that this was the career I had been searching for: a parent special education advocate. Last July, I decided to start a business called CNY Special Needs Advocacy, LLC. My mother agreed to help. She does all the administrative tasks, and since she is a former teacher she can lend perspective.
Meanwhile, my son was in an inclusive kindergarten class, but he wasn’t considered a child with a disability. Luckily, there was extra support in that classroom. The school initially agreed to give my son special education services in the later part of first grade and second grade. Despite his lack of progress, the school shocked me when they proposed a lower level of services. I had to hire an attorney and file a due process complaint, and our issues were resolved at a resolution session before we made it to a formal hearing. I asked for every service, support, modification, and accommodation that my son was entitled to.
My son struggled as we tried to figure out what was really going on. He was eventually referred to the Margaret L.Williams Developmental Evaluation Center in Syracuse. They said he has ADHD, anxiety, dyspraxia and some sensory deficits. To me, these labels don’t mean anything because there is so much overlap between them. Treating them is what’s important. I do that with my kids through counseling, medication management, and by helping them at home.
My daughter is so different. Now 9, she has done very well in school. Socially, she struggles. She was diagnosed with central auditory processing disorder, ADHD, a mood disorder, and is possibly on the autism spectrum. Per the request of her audiologist and counselor, we are currently seeking a complete psycho-educational evaluation through the school district and an evaluation at the Williams Center for formal diagnosis.
This school year, we switched to an elementary school that is better suited my kids’ needs. The administration and staff have gone above and beyond to help my children. But it’s still challenging. I have to explain what medications they are taking. I have to tell the school, “If you see something odd, call me. It could be due to the medications.”
My daughter is not comfortable admitting that she has a problem like ADHD. However, she is doing better each day. I know that if I stopped taking my medications, things would get ugly. So I make sure my kids take their medicine every day and I make them go to counseling. It’s not easy, but I do it because I want them to do it for the rest of their lives.
Today, I am a 34-year-old single mom raising two kids with special needs and I work on other cases all day—looking at records and helping parents to understand test scores—helping them establish strong home/school collaborations. As an advocate, I make the interactions with the schools about what is most appropriate for the student. I tell parents, “This is a collaborative process. We have to be fair to the school. We can’t always do what is best, but we’re doing what’s appropriate because that’s what the law says.”
When parents come to me, their first question is often based on a specific problem. Some families just want me to get them past a certain point. Others want me to be in every meeting because there is an annual IEPs review. (Individualized education programs are mandated by the Individuals with Disabilities Education Act.) I think the system is very confusing for parents. It’s also very complex for the school. I don’t think the schools always understand how disabilities can affect each person differently.
I take a very active role in advocating. I will read over the records 10 times, make sure I’m not missing anything. At the Committee on Special Education meetings, I explain to parents beforehand that I may use terms they are not familiar with. But I’m going to sit down with them afterward and explain exactly what happened—in plain terms.
I work with kids with a variety of disabilities, but I like the challenges of the ADHD or learning disability cases. Nobody is going to tell a child with a severe intellectual disability, “You’re not getting any services.” It’s obvious. With ADHD or learning disabilities or even high-functioning autism, it’s often not.
Kids don’t have to be failing to get services, especially since tests given in the classroom can be subjective. Special education needs to consider the academic, cognitive, social/emotional, behavioral, and physical development of students.
Overall, schools need to better communicate what skills kids need to master the curriculum—define that in plain terms to the parent. Although parents strive to communicate their child’s unique needs, it is not always understood the correct way. Something as simple as “My child has a hard time taking notes in class” can easily be solved. This process is about agreeing on something.
Award-winning writer Tammy DiDomenico lives in DeWitt with her husband and two sons.
Photo above: Michael Davis photo