Maneuvering your way through an often faceless education system to ensure the best learning for your child requires a great deal of time, dedication and work. Now imagine doing this with a severely autistic child. Karen Peterson, 44, is a single mom from Harlem, NY who has tirelessly championed for her autistic son Nigel, 23, and his right to learn despite his disability. Since his diagnosis at age 3, Karen has cut through the red tape, challenging school systems, becoming an unofficial subject matter expert and teaching herself almost every law (and loophole) in the system.
ESSENCE.COM caught up with the Adjunct Instructor to learn what’s most important in maximizing the education of a child with special needs.
A Support System: When the doctor told Karen that her son was autistic, she had no idea what that meant. Sure, it explained why he was so advanced (he walked at 8 months), made no eye contact and didn’t respond to his name, but she was clueless about the social, emotionally and financially implications. Quickly expelled from his first “special” school program, Nigel was a handful. No one could control him, not even the professionals. Feeling the system had failed her, Karen decided to depend on the one person she knew cared most for her son. Herself. In an attempt to do it alone, she quit her job and sought public assistance so she could care for Nigel. But it was all too much.
No longer with Nigel’s father and separated from her mother who was across the country, Karen realized she needed help. And that assistance came by way of a state program that was dedicated to keeping families intact. She was appointed to Zoila, a caring Dominican woman who spoke very little English and provided a stimulating and safe environment for Nigel when he was out of school. She was an “angel” who heard Nigel’s silent voice and Karen’s silent prayers. From that experience, Karen began to realize that in order to get the best for her son she had to work with the “system.” Even though it had failed her so many times before, she needed the resources.
She developed and continues to foster relationships with state officials and medical service coordinators while also taking an active role in parent support groups that share learnings and opportunities. And when things got tough, like when budget cuts kept Nigel from one-on-one teacher shadowing and therapy, she hired a national educational lawyer. “In this battle,” Karen says, “a good lawyer never hurts.”
Faith: Faith can be hard to exercise when you’re faced with feelings of helplessness, discouragement and fear. But Karen knew it would be harder to face these things without it. So she trusted God and herself. Giving up was not an option because if she didn’t fight for Nigel, who would? She had a big job to do for a young man with an even bigger heart, and with each small victory she grew more confident in her abilities.
A Voice: When you’re providing for a child with a severe disability, you must learn to speak up. You’re just one of thousands of parents in the system, so your voice has to ring loud. Learn the law, be tactful, communicate with anyone who is involved in your child’s educational process – social workers, teachers etc. - and build relationships with people who have the power to make changes. Karen admits to ruffling a few feathers along the way, but popularity was never her goal in this process. She has always only wanted the best for her son and since he can’t speak up, she does.