Krysta
Krysta is my first child. She is the reason that I do what I do. If she was not born when she was, where she was, and profoundly deaf, I would not have had to make a path where none existed before. If she were born today, tested at birth, and the implant was easily available, there is a chance that I wouldn’t have been drawn to return to school on a mission to help both families and the “System” learn about this brand new group of DHH children and students. So it is with a full heart that I share Krysta’s story…

BACKGROUND INFORMATION

Krysta’s Experiences with Inclusion in the Public School System

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Krysta was born before newborn hearing screening, and so I have the same story as many families during the 1990’s of trying desperately to get someone, anyone to listen to me, to even test to see if my daughter was deaf… I couldn’t even get the pediatrician to snap his fingers or clap his hands. Once I had finished my research, started my notebook of phone calls and conversations with the doctor’s office, and asked for a referral to a Pediatric ENT for an ABR all he could say to me was, “That’s just going to tell you if there’s nerve damage. There’s nothing you can do about it anyway.” NOTHING!! This was my first child. The walls in that little exam room began to close in, and all I could hear was “NOTHING.” Well, yes, she is. She is profound-profound, left corner, Mondini Deformity (cochlea are not fully developed) deaf! We chose to follow the route of oral deaf early interventions breaking through a lot of barriers in order to get her what she needed. Although she was born profoundly deaf in 1991, she received a cochlear implant (CI) at the age of 3 ½ in March of 1995. What I am going to discuss in this particular article is our experience with mainstream education and Krysta’s inclusion into the general education classroom which began when she was 8 years old.

FEDERAL LAW

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In 1997 the United States Federal Government passed Public Law 94-142 which stated that all children must be given access to the least restrictive environment (LRE). Specifically, the law states:

The Individuals with Disabilities Education Improvement Act (IDEIA, 2004) has mandated that, “to the maximum extent appropriate, children with disabilities must be educated with children who do not have disabilities,” (Heumann, et al., 2000, Deciding Placement section, para. 2).

This mandate, combined with the fact that more and more students with CIs are developing age-appropriate language skills (Flexer, 1999; Geers, et al., 2002; IDEIA, 2004; Moog, 2002; Rhoades & Chisolm, 2001; Robbins, 2002; Sorkin, 2002), means that educators are going to continue to see an increase in the number of these students in the general education setting. The reauthorization of IDEIA also includes a mandate in part C in reference to children who are DHH that the full continuum of communication options be provided to families due to the fact that with improved hearing aid technology and cochlear implants, these children now have the potential to develop age-appropriate spoken language (IDEIA, 2004) and to be educated with their typically hearing peers. Despite the mandates in IDEIA and the fact that disability classification is not supposed to drive educational placement (IDEIA, 2004), some parents report that there continues to be a propensity to place students who are classified as DHH in segregated settings and to assume that they require sign language (Barrow, 2001; Tyler, 1993). This phenomenon continues to take place even after parents have chosen to give their children a CI and have requested that they be educated using spoken language (HEI).

PREPARATION TO MOVE TO PUBLIC SCHOOL

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We brought Krysta out of the private/non-public school system (Article #2) just before her 8th birthday. At the Individual Education Plan (IEP) meeting the year before we made the move back to our neighborhood school we let the private school know the plan, and our local district provided some academic materials so that she could begin to be ready to enter the general education classroom. One option that was absolutely never an option for us was to put her into a Special Day Class. Before the actual IEP that would bring her home, I met privately with a school district representative to discuss appropriate options. Having a preliminary meeting such as this before the IEP eliminates the surprise factor for the district employees, reduces the likelihood that you as parents will be told that it will take another meeting to decide, and helps to ovecome potential objections. This is assuming you pick your partner from the district carefully. I knew the woman I met with was on the side of what was right for my child because I had been working with her for five years already. I had also gone to battle 3 years earlier gaining the “most appropriate educational setting for my individual child” above many attempts on the part of the school district to object and around many individuals who wanted to simply continue the status quo.

At this preliminary meeting were two district representatives, my sister, and myself. I learned fairly early on to never attend a meeting alone … for a variety of reasons. The first topic we discussed was just exactly what grade Krysta would enter since she had not actually yet been in any “grade.” By her age alone had she not been deaf, she would have been entering the 3rd grade that upcoming year. We discussed putting her into a 1st grade class because she had never attended public school before and had not had any actual academics as of yet. During the discussions I explained that I would like them to keep a close eye out for when she would be ready to skip a grade and catch up with her peers ~ for two very substantial reasons. 1) There was absolutely no way in the world I wanted to have my child in high school at 20 years old. 2) She was not in any way socially delayed and would therefore be a little “mother” to the other kids in the class. I knew without a doubt that this would translate into behavior issues. Because we were discussing all of this prior to the actual IEP, we were able to do some quality brainstorming. What was suggested by one of the district representatives was a compromise that would place her directly into the 2nd grade with a lot of itinerant support.

The second major issue that was predetermined at this meeting was how she would receive the most appropriate speech-language services for a child with a cochlear implant. I respect and work professionally with both private and school-based speech-language pathologists (SLPs). However, the most appropriate service for my oral deaf child with a cochlear implant was to continue the services of the Certified Auditory Verbal Therapist (AVT) we had been seeing privately. Unfortunately, many school-based SLPs in our state, as good as their own education is, do not have the training in Auditory/Verbal therapy that is required to help children with cochlear implants to successfully close the language and communication gap between their chronological age and their hearing age. I was blessed to be having this meeting in order to discuss this issue prior to the IEP. In this way there was no chance of offending an SLP at the IEP meeting in front of his/her colleagues or appearing to be challenging them as a professional. The fact is that quite frankly, they know what they know, but many, many were not given this piece of the puzzle during their SLP programs. This has been confirmed to me by hundreds of SLPs in one-on-one conversations as well as at meetings and trainings. The good news is that there are training opportunities for private and school-based SLPs to either become certified AVTs or to, at the very least, learn Auditory Verbal/Auditory Oral techniques so that they can use them with CI kids who will show up on their caseloads in the public school setting.

The third reason for this preliminary or pre-IEP meeting was to determine how Krysta’s classroom program would look. I can say that I was blessed when I mentioned a program here in the Los Angeles area that is truly the gold-standard of oral education for the deaf. The district representative in charge asked me if I just wanted Krysta to go there. Boy, I’ll tell you, if I hadn’t spent the last 6 years traveling 200 miles a day to take her to her school programs, I would have jumped at the chance. But, truly, it was time to let the girl stop living her life on the freeways of Los Angeles, eating in the car, sleeping in the car, doing homework in the car, and to start seeing her own neighborhood in the light of day. What we did do, however, was the district allowed me to design her program based on the model of this private option school.

FREE AND APPROPRIATE PUBLIC EDUCATION BEGINS

Krysta entered the general education system in our neighborhood elementary school in the second grade. She was put on a Resource Specialist (RSP) Core with private/non-public SLP services with a Certified AVT, Deaf /Hard of Hearing (DHH) Itinerant services, an Educational Audiologist, and a totable FM system. In addition, because of a history of Electro Static Discharge, she had 3 wooden chairs written into the IEP. One was in her classroom; one was in the RSP room, and one was in the library. The school maintenance department was responsible for staticizing the school once a quarter.

Trauma hit! Just before she left the oral school for the deaf to enter public school we suffered a device failure. (Article #3) She started public school with zero sound. Thankfully, my school district continued to respect our communication choice and did not try to add sign language to her academic program during this extremely difficult time. We made it through one of the absolute worst experiences with the help of the professionals at the House Ear Institute (HEI), our Auditory/Verbal Therapist, our local district, Krysta’s other physicians, and family. One more blessing from the local school district was that they hand picked her first teacher. They found a wonderful Special Education teacher who was ready to make a change to the general education classroom and offered her the 2nd grade class. This teacher, by the way, is still teaching second grade six years later. Secondly, the Educational Audiologist and a representative from HEI provided inservices for Krysta’s classmates and the school staff to explain the implant and all of the accompanying issues. Finally, Krysta had two girls in her class who took her under their collective wing which helped with in the area of making friends and building understanding on the playground with the other students who did not understand the deafness or the cochlear implant. I highly recommend a buddy system for the CI student. The buddy can be both a helper and a buffer in the general education setting.

Third grade was most definitely a struggle in every way. Typically, when students move from second grade to third grade they are moving from an environment in which they are “learning to read” to an environment in which they are “reading to learn.” After a fabulous first year in public education during 2nd grade, I blindly arrived at school on the first day to introduce myself to the teacher and offer to be available to her. I will never forget the look on her face as I saw her walking out to greet her class. She had just moments before the bell rang for the first day of school to begin, been told about the existence of a deaf child, an oral deaf child, in her class and the FM system she would be using. That teacher looked like a deer in headlights. Unfortunately, that first day set the tone for the entire year. Needless to say, 3rd grade was somewhat of a loss in Krysta’s educational career. This school year was the year in which we learned to select the teacher early and invite them to any IEP that may be held in preparation for the experience in their classroom. This, the year that she would begin to be held accountable for what her peers said in addition to what the teacher said was a year that the FM system was broken more often than it worked, and the teacher did nothing about it. This was the year that Krysta felt “different.” This was the year that she felt the need to wrap her own property as gifts for people who were mean to her as well as to bring money to school in order to buy anything for anyone who asked. We made it through the 3rd grade, and used the many experiences that at the time felt negative, as learning opportunities. From that point on, every year at the IEP we, the team, took the approach that “this is the first year we have ever had a “____” grader with a cochlear implant. What are we going to do this year?” And, although the 3rd grade teacher did her very best to put fear in the 4th grade teacher, it did not work and 4th grade was a great year for all.

In 4th grade she was functioning at grade level, so we stopped having her pulled out of class for RSP. The RSP teacher began to send an aide into the classroom. That same year, however, due to curriculum content and the overwhelming amount of vocabulary, we added an oral interpreter (or language facilitator). In the same way that DHH students who use sign language automatically have the right to have an interpreter, we decided as a team that in order to meet Krysta’s right to an interpreter we would add an oral interpreter to her IEP. Because her language was not sign, this person’s function was to offer repetition and clarification of the key concepts, vocabulary, and teacher instructions. By adding this person to Krysta’s group of service providers we were able to continue to provide Krysta with equal access to the curriculum without any discussion of removing her from the general education classroom.

Although my kid and my family, like all kids and families, had many life experiences both good and bad, I am happy to say without hesitation that 4th and 5th grade continued on in this very successful manner with wonderful teamwork and communication among the team members.

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.

JR. HIGH SCHOOL

To be continued…

HAPPY ENDINGS AND NEW BEGINNINGS

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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 this summer (2014), we have what can only be called the ultimate full-circle moment. For both Krysta and me our hearts and souls have been brought full circle 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.