TROUBLE IN THE 6TH GRADE
Unfortunately for Krysta, our family moved at the end of 5th grade. We continued to drive her to the elementary school she had been attending until she finished the 5th grade. Why, you might ask, would we choose to drive her to school an hour away each day? As a teacher as well as the mom who had been dealing with a large IEP team and complex IEP meetings for 9 years, I was hoping to have a wonderful relationship with our new school district. The new district welcomed her and wondered why we hadn’t knocked on their door when we first moved into the community. Once we gave them the IEP they were extremely appreciative to have the summer to prepare to provide her with appropriate services.
You may have noticed that I used the word “unfortunately” when I began this section, and then went on to praise the district. The situation we found ourselves in was that once again we were the pioneers. Krysta was the first oral deaf student that this elementary school had ever had. But what a great job they did in the beginning. The principal, classroom teacher, and SLP met with Krysta and me before the first day of school in order to meet her and to discuss how her program would be put into place. The classroom teacher brought in marshmallows and cotton balls the day she had me come in to offer an inservice to the class. I explained the device, Krysta’s hearing loss, and how she communicated. I also explained the FM system and answered lots of questions her peers had about all of it. Then, after I left, the teacher had the whole class put cotton balls in their ears and marshmallows in their mouths. She gave them the opportunity to experience a little of what Krysta experiences all day everyday. Following this experience they wrote an in-class essay about how it felt to be deaf. Although none of the teachers at this particular school had any prior experience with a student with a CI, the classroom teachers, the SLP, the RSP teacher, the oral language facilitator, and the principal were actively involved, willing, and wanting to do right by Krysta… And so they did.
The “unfortunate” part of the story is when the DHH itinerant teacher entered the picture. After 12 years of helping Krysta get access to all that she needed and 9 years of IEP experience, I allowed this person to convince me that this wonderful staff was incompetent and Krysta was going to suffer during the critical final year of elementary education. We moved Krysta to a different elementary school within the district with promises of maintaining her IEP components and providing the support of the DHH department on campus. In actuality, the new school within the same district did not provide the oral language facilitator, appropriate SLP services, or appropriate academics.
They completely removed the RSP services which had been her primary and very successful academic support since entering public school. They advertised for and hired a sign language interpreter who would leave Krysta without an interpreter/aide whenever the school needed him to substitute for an absent interpreter. They repeatedly lied to us about signing to her. They pulled her out of the general education classroom for math and language. They reduced her work load after saying that they would help “close the academic gap” before middle school. Although the district program specialist recognized and respected the fact that trying to teach this child her academics in sign language was as useful as teaching her in Japanese, the itinerant DHH teacher went so far as to disrespect and argue with the program specialist in front of our family at an IEP. Ultimately, Krysta left the 5th grade functioning at age level in receptive and expressive language, functioning at grade level in math, and doing grade level language arts with RSP support, and she left the 6th grade with a greater than 2 year loss.
HAPPY ENDINGS AND NEW BEGINNINGS
As I re-launch my website it is the perfect time to share the happy endings and new beginnings in Krysta’s story. I will share her secondary education experiences very soon. As of the summer of 2014, we had what can only be called the ultimate full-circle moment. For both Krysta and me our hearts and souls have been brought back to the John Tracy Clinic (JTC), the first safe haven we found after we received confirmation of her profound bilateral hearing loss. Following the official diagnosis the first place the ENT sent me was JTC for the parent support. Following Early Intervention services with JTC, this became Krysta’s first preschool. We became the first family to arrange a carpool. Because John’s mom and I were each traveling over 80 miles per day from two different cities, we started meeting in the middle and sharing the journey. Then, when Heather Whitestone became the first deaf Miss America in 1995, one of her first publicity stops was at JTC. Krysta and John were selected for the publicity pictures.
Fast forward to 2011: Krysta was on Facebook with Nolan, a friend from JTC and noticed that Nolan was also talking with John, and that is where this chapter begins. Krysta reached out to John to see if he was the same boy she had gone to preschool with, and a new friendship began. They were no longer 2 years old learning to use hearing aids and to listen and speak, spending 3-4 hours a day in the back seats of their moms’ cars. Krysta and John were now adults, high school graduates, and discovering each other all over again. For them the common journeys of their childhood was a foundation on which to build a relationship. Just like their preschool beginnings have kept Krysta’s strongest lifelong friendships those with whom she attended the two Auditory/Oral schools for the hearing impaired, so it was for her with love. On May 8, 2014 Krysta was married at the John Tracy Clinic under the special beautiful tree surrounded by friends and family. Four of Krysta’s girls and 2 of John’s guys also have hearing loss. The congregation and the wedding party were full of people of all hearing abilities, some hearing, some hard of hearing, and some profoundly deaf and all communication modalities, some who only use spoken language, some who only sign, and some who use total communication. We were able to share every word of their ceremony with every person in attendance with Real-time Captioning or CART. My dreams of Krysta someday being able to communicate with both the hearing and deaf worlds was coming to life right there in that moment.
As I watched everything that day, and watched my daughter start her new life as a married woman, my thoughts returned to so many moments on the journey we have taken together and the beginnings with Krysta and John at JTC. I thought about how I used a child safety system to keep these 2 deaf children close to me while I corralled them into preschool and how my kids always give me a hard time for “putting Krysta on a leash.” Seriously, how could I not? I could not call to them to come back to me if they ran away, and God forbid they would have run in opposite directions. I thought about all of the professionals who had told me that my beautiful baby would never be able to speak and must use sign language, and that she would never hear her own name. I remembered sitting in my living room with the Regional Center caseworker that suggested that I change her name. I thought about the phone calls and articles I received from complete strangers while I was exploring the cochlear implant. I remembered those strangers who accused me of not loving my child and not accepting her. I thought of all of the professionals who helped my girl and me along the way. I was filled with such gratitude for the surgeon, Dr. Luxford and the AVT, Sylvia, who is the reason Krysta was able to stand there on this her wedding day and speak her vows and to hear her husband tell her he loves her and that Sylvia and her own husband were with us to celebrate. As Rachel, Alexis, and Evan gave their speeches, I was brought to tears of joy at the sounds of their beautiful voices speaking their love for Krysta. I remembered the night I had a slumber party with these 4 deaf 6 year olds who are now all grown adults speaking for themselves. I thought about all of the people who fell out of my life because of this journey we had taken, and my heart was full. Everything is exactly as it should be, and the path had lead us right back to the campus of JTC where it all began.
As parents in this world of oral deaf education, there are so many hopes and dreams that we have, so many dreams that we don’t know if we are allowed to dream, and so many questions. I remember like it was yesterday sitting in those parent support meetings feeling like a great big fraud pretending to be a real mom. By putting one foot in front of the other I now realize that I did okay; we did okay; we are better than okay.
