Freedom to Communicate— by Hend Ibrahim
I always assumed that deaf people communicated through sign language and thought it was a universal language. So when my husband Sanjar and I first learned that our third child, Adam, had Usher Syndrome type 2C and was profoundly deaf in his left ear, I began to learn and use American Sign Language. Adam has a moderate to severe loss in the right ear.
Learning sign was fun and easy and most signs made sense. I wanted to communicate with Adam on the same level as I communicated with my other hearing children; soon it became too difficult. I had to pause, to search online how to sign specific words. It was burdensome and I just couldn't keep up. I tried attending silent dinner meetings to meet deaf, hard of hearing and hearing people interested in ASL, but I couldn't even have basic conversation. I was frustrated. As Adam grew, my lack of fluency would mean a lack of communication, which would be disastrous.
I attended a parent meeting in nearby Fairfax County at Camelot School. Parents at the meeting were sharing their experiences. Suhad Keblawi, one of the parents, began talking about Cued Speech, which I had never heard of as a communication option. Months later, I googled Cued Speech and saw videos on youtube. I decided to give it a shot and asked Suhad to teach me. I had nothing to lose!
After my first lesson, I could cue simple words and felt confident. It took my brain time to process the cues, and put words together. Adam was 2.5 yrs old when I began cueing to him. Cued Speech is more mechanical and at the beginning he rejected it, which I found discouraging, much like an infant who is learning to use hearing aids. Adam has consistently worn hearing aids since he was three months old. He uses a Roger Pen remote micophone system in school.
I met a deaf young lady, who was cueing with Suhad. Suhad voiced for her and I was amazed by how they were communicating word to word with no hearing at all. I wanted that limitless communication, and freedom to say what I wanted without thinking. Cued Speech gave me the freedom to make silly sounds, sing silly songs and made up songs.
Soon it was time for Adam to age out of early intervention into preschool, which meant we needed an Individualized Education Plan. I expected the committee would do assessments and tell me the services he needed and what they could offer based on his individual needs. I expected them to help us on the path to success.
But I was wrong. I learned quickly that I needed to be my Adam’s advocate and fight to obtain the services he needed. My husband and I spent a lot of time and money, only to hear educators tell us that mode of communication was a school choice. They didn’t want him to use Cued Speech; they wanted him to sign.
"Just sign, give us a chance to work with your son," they said. "Give us a chance to work with your son, see if it works, we can always come back to the table."
I knew I needed Cued Speech to communicate with my son, so I stood my ground. No one in our county used Cued Speech. I refused to sign an IEP that didn’t include Cued Speech as a mode of communication. To me, his right to communicate in English was a basic human right. Each time I returned home from these meetings, I saw Adam’s face, and felt renewed energy and power to continue this uphill battle.
I reached out to organizations for help and the National Cued Speech Association was very responsive to my call, and advised me of my rights. They offered to attend Adam’s IEP meeting. I received tremendous emotional support from the Cued Speech Facebook group.
The school had not completed basic evaluations required for an IEP - speech and language, psychological and educational evaluations. Our advocate filed an OCR complaint and the evaluations were soon conducted. The results indicated where Adam was academically and in terms of language.
Still, the school continued to ignore my requests. All I knew is that I needed Cued Speech to freely communicate with Adam. These were the critical language learning years to prepare children for school and academics. I called for mediation and we came to an agreement that included Cued Speech. Adam was 3 1/2 when we signed our first IEP.
Our county assigned a special education teacher who knew Cued Speech. They could not find a speech therapist with cueing skills, so they hired a Cued Language Transliterator (CLT). In just a few months, Adam was cue reading, and watching the CLT for information.
I communicate freely with Adam and there are no barriers due to deafness. It doesn't matter where we are, I can cue anything and we can actually have a CONVERSATION!
Adam also uses his auditory skills to get information, but when the message is unclear, he depends on cueing to get the complete information. He is now 4 1/2 and gaining language rapidly. As a result, our county decided to train more staff in Cued Speech.
My child is amazing; he inspires me. I feel God has honored me with a special gift. Adam is the smartest, funniest, and the kindest 4-year-old boy I have ever known. At bedtime every night, I always read to him and pointed to the words. He began reading by himself at three. No one taught him.
We now have Cued Speech in our county, because I believed in it and paved the way for other children to have Cued Speech in their lives. I am thankful and inspired by other parents who used Cued Speech. I see the fruit of their labor, to make laws and regulations to protect the rights of children who are deaf.
Investing in our children helps them be included so they will be productive citizens. If you believe in your child, your child will believe in himself and if he believes in himself, nothing is impossible. Adam showed me how one person can change the world.