By Sarah Vander Schaaff
Imagine for a moment you’re the mother of three-month-old twins. One is developing as your oldest child had. The other will engage in eye contact only when he wants, not when you initiate it. You speak with your pediatrician who refers you to an eye doctor. You have your state’s early intervention program make a home visit. Everyone tells you it’s nothing to worry about. You’re not convinced, but decide to wait and see.
That’s the beginning of this story; one that in retrospect was filled with “red-flags.” There’s a real mom in this, but in the interest of protecting her privacy, we’ll call her Melanie.
By the time her son was two, Melanie told me, she felt an urgent need to have him evaluated, but it would be a six to twelve month wait just to be seen. So when an appointment opened up at Children’s Specialized Hospital not far from her house, she seized it. There, a nurse practitioner confirmed what Melanie had been thinking since her son was an infant: he had autism. They’d need to come back to see a neuro-developmental pediatrician to have the diagnosis confirmed.
Melanie would eventually take her son to three more hospitals for evaluations, including a three-day analysis at the Kennedy Krieger Institute in Baltimore, Maryland.
She learned her son was mild on the autism spectrum, one reason so many friends and doctors had not recognized it. But to her, she said, his differences had been, “plain as day.”
The Kennedy Krieger session gave her a better understanding of her son’s deficits and strengths. What to do next, though, was not clear.
“I had some of my darkest days figuring it out,” Melanie said.
When a special needs child is under the age of 3, they are eligible for state mandated early intervention programs. Federal grants, under what is now the revised Individuals with Disabilities Education Act (IDEA), provide for this early intervention, considered an important window of opportunity in addressing needs. Receiving that intervention, Melanie explained, was not as straightforward as it sounds. First, there was the question of how many hours of therapy her son would qualify for. The doctor at one hospital had recommended 20-25 hours a week of intensive therapy. But Melanie said the state did not agree with those hours.
“I had to complain and argue just to get three,” she told me. And the cost to the family is determined by income. She would be charged $90 an hour.
It would be possible to find a less expensive and potentially more qualified independent therapist for the Applied Behavior Analysis (ABA) she sought. But she didn’t know where to find one.
“I was panicking.”
The autism her son presented was evident in specific ways. First, as she noticed when he was a baby, “eye contact is a learned thing.”
He could also become fixated on a certain interest.
“He was obsessive with construction toys,” she said, “diggers—something he always had to play with.” When she attempted to take them away he would have, “an overblown reaction.”
There was also self-stimulatory behavior. In her son’s case it is visual. He could lie on the floor with a truck and roll it back and forth, watching the wheels, over and over.
“Sometimes kids don’t play with a toy quite appropriately,” she said, explaining what is called “visual stimming” for short.
But her son is social. He likes to play with his siblings and he is capable of learning from his peers.
That social quality is what made the next phase even more difficult for Melanie. At age 3, a special needs child moves from early intervention in the home to a district provided preschool. The question then was whether Melanie’s son would be placed in a self-contained classroom composed exclusively of children with IEP’s or an inclusive one with children who are developing in a typical neurological way.
Reports from the Kennedy Krieger Institute and The Children’s Hospital of Philadelphia supported placement in an inclusive class, and initially, Melanie believed the district would follow those recommendations.
But after doing its own evaluation, the school district came to a different conclusion and determined he’d be placed in a self-contained class.
“I gave you information from top autism experts and I can’t understand where you are coming from,” Melanie said she told her district. “I am not going to sign your IEP. I am going to hire a third-party consultant to come in here.”
It was then that the district, she said, began to “back peddle.”
Melanie found the most useful information about how to navigate the system has come from fellow moms. One recommended a therapist who now comes to their house to work with her son. Others talk about things they’ve learned from experience, such as which school districts are earning a reputation for being “special-ed unfriendly.”
In those cases, Melanie said, parents talk about the last resort: a lawsuit.
“I keep pages of documentation. I expect we’ll be in court. They have given me every reason, but I have chosen not to.”
“Educated parents,” she said “are not who they like.”
April is Autism Awareness month and in a general sense, our society is more familiar with autism. The Center for Disease Control’s recent report noted autism rates are on the rise. In my own state of New Jersey, for example, 1 in 28 boys is on the spectrum.
But despite this awareness, many of us don’t know what to say to our friends who have autistic children. We may have an internal debate over what is most appropriate and does justice to the scope of issues, both related and unrelated to the diagnosis, the friend is dealing with.
“I have never ‘shied’ away from speaking about my son’s autism or letting people know that he has the diagnosis,” Melanie told me. “I don’t think it defines who he is, but it is part of who he is. And it has forever changed me -for the better-and made me a better person in many ways.”
“In my opinion,” Melanie said, when I asked her how to be a friend to someone in her situation, “if you have a friend who is learning that their child has special needs, the best thing you can do is to offer your support. “Is there anything I can do to help?”, “Do you want me to watch the kids for an hour while you make the phone calls or do the research that you want?“. And if we’re talking about autism specifically, since social interactions can play such an important role… “can we get our kids together at the park for a playdate soon?” And you don’t need to treat your friend any differently just because her child is diagnosed with autism… she’s still the same friend she has always been to you. Just a friend with a larger burden to work through to find the best path for her child.”
The only conversation Melanie does not appreciate is when family or friends give advice on what she should do to help her special needs child.
However, she said, “I do appreciate if a friend has another close friend or relative dealing with the same diagnosis, putting them in touch with me is sometimes helpful.” And she added, “If a friend has a close contact in special education law, special education advocacy, or behavioral therapy or any expertise in relation to our child’s special need, this is great information to know and can provide some much needed information and guidance along the journey.”
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