By Myra Cullum, California H&V
“You will always be her best advocate!”
Those were the words from a retired DHH teacher. She advised me to keep EVERYTHING on my young daughter, who has a severe/profound bilateral hearing loss and Down syndrome. And I did. I saved IEPs, testing, physician records, audiology reports, and work samples. I even saved Katherine’s coloring pages! I saved boxes and boxes over the years, and that came in handy. I never knew how important those boxed documents could be.
When people would find out that Katherine was Deaf, they would say, “Oh, I’m sorry!” But we saw a courageous child who gave us nothing to be sorry about. Katherine opened our world to a whole new way of seeing things and experiencing life. California Hands & Voices Family Camps and social events equipped our family with tools and a deeper understanding of how to raise our child with a sense of community and belonging in a challenging world where she would mostly be isolated. Katherine opened our world to a whole new way of seeing things and experiencing life.
We saw in Katherine a determination and tenacity for life that was inspiring. She did not give up. She would try a new challenge until she mastered it, whether it was balancing on a curb while walking along like her sister or tying her shoes.
During Katherine’s educational journey, we had to advocate for appropriate placement and robust goals almost every year from preschool through high school and into transition. Without a DHH program in our home district, we tried DHH programs in districts that required a drive of 20-40 minutes and a residential school two hours from home.
As a certified teacher and a homeschooling mom, I was intimately acquainted with the California State Educational Standards, and I could see that Katherine was not getting the same education as her siblings. So, I began advocating for stronger, more robust goals in her IEP meetings. Out of my boxes of saved work samples (and sometimes to the dismay of teachers and administrators), I produced evidence of the level she had been taught in previous years. For example, she had been writing paragraphs in 5th grade. Then, in 6th grade, she regressed to coloring pages. My saved work samples exposed the district’s negligence.
As her mother, I was not always seen as an equal voice in the IEP meetings. Even with my teaching credentials, my voice was still heard as just a mom to the professionals around the table. Sometimes the meetings were tense, and I felt outright attacked. I was very glad that I had been coached earlier to consider myself as my child’s best advocate. I kept that as my armor when I went to battle in IEP meetings.
For 9th-12th grades, Katherine returned home and attended the DHH program at a school only 20 minutes away. At this large local high school, Katherine had a small, contained DHH classroom for her core classes in math, science, reading, and writing, taught by a Deaf teacher, who was a great role model. She was mainstreamed for other extracurricular classes like art, photography, drama, and her favorite–Dance PE. My daughter grew socially and academically and felt so proud of herself. She finally soared. She was even asked to sign the national anthem at graduation in front of thousands of people.
After four years of putting my boxing gloves down and relaxing during her high school IEP meetings, I had to put my “dukes” back up! It had been a long journey, but it was not over!
After that successful, edifying high school experience, Katherine was forced to return to our home district for their adult transition program. As before, our district did not have DHH services, so they contracted with a DHH Itinerant teacher to come once a week to work with Katherine. That was not enough. Katherine’s regression was swift and discouraging. She had made great gains in high school. Now, isolated in a program with no one to communicate with in ASL, Katherine suffered language deprivation and social/emotional regression. She began carrying around stuffed animals and having angry outbursts. It was heartbreaking. Yet, I could not give up.
Thanks to California H&V ASTra Advocates and a local lawyer, we were able to show the district in a bare-knuckles IEP meeting that they were out of compliance. A state complaint was filed. When we won, the district began to listen and be much more agreeable. Now, Katherine happily attends a DHH program in Orange County, one hour from home. She has Deaf peers who sign and teachers and staff who all use ASL. She is finally in a language-rich environment again and thriving.
It is true: a parent will always be their child’s best advocate. A parent knows their child better than anyone else. Therefore, never give up!