Special Needs and Hearing Loss: To Whom It May Concern (or continue to not bother)
We moved to California from Montana during the summer of 1995 as a result of a prior visit to the California School for the Deaf at Fremont program earlier that spring. We were looking for a program that would meet the needs of our nearly three-year-old deaf son with special needs. At that time, CSDF had a special needs unit in full swing, providing what looked like appropriate services to a population of deaf children with additional needs. I was pregnant with our second child at the time of our move. I had no idea that our second son would also be born deaf.
Before school started in the fall, the deaf school's psychologist called me at home, asking if I would be willing to bring Jacob in for his school entrance assessments so they could get a head start on their testing for the year. I accommodated her, thinking that we were going to find out some helpful information about how best to support our deaf son with special needs. When I arrived, I was astonished to know that I was not going to be allowed to be present at the evaluation. The office was in shambles: papers and books scattered all over the floor. I did not see many child-friendly items in her office, and it was not at all orderly. She assured me that I would be able to observe the interaction through a darkened window, but that my son would be fine without me. After some hesitation, I agreed, as many young, trusting moms would have, and let her take my son as I headed toward the door. She pointed me toward an office where someone could show me where the darkened observation window would be.
When I entered the office where I could get further direction, nobody seemed to know about the observation room that was promised. Finally, someone suggested that they remember seeing a window in one of the storage rooms that lead to the psychologist's office. My mom and I could barely shove our way to the crowded window. By the time I got to the window, I saw a very rigid interaction with gruff transitions as the psychologist thrust picture after picture in front of my young pre-lingual child. There was little wait time between requests from the adult, and my son was trying to get up and get out of the messy room to look for his mom. He stepped on several papers, files and books on his way to the door. It didn't take me long to find my way back to the door he was trying to exit. The psychologist was criticizing me for not disciplining him for walking on her books and papers. I was completely shocked at her responses. She had seemingly no awareness of best practices for assessing tiny children with special needs. She wanted to discuss her findings immediately.
We went to the playground to let Jacob unwind from his traumatic experience. I sat in the swings, contracting for lack of a comfortable place to converse. The focus of the psychologist's conversation was to let me know that she felt CSDF would not be an appropriate program for Jacob's many needs. I told her that this would have been good information months prior to our family move. I told her that we had just sold a very nice house in Montana and had made a very costly move both financially and relationally only to move into a very OLD mobile home in a crowded park nearby so our family could have access to a signing environment in order to maximize our support for our precious little one with multiple needs. She was not very supportive of our situation. She told me that there was no legal way to tell families, prior to a move, that their child would not meet the criteria of the program, that they could only offer a trial period to see if there was a match.
I called the school later that same day to let them know that on no uncertain terms, that the CRAM FAMILY would be taking full advantage of that trial period, and that we would determine the appropriateness of the program for our child. Reluctantly, they allowed me to fill out a registration packet, and we had our foot in the door. During that trial period, we took full advantage of parent sign classes, Friday play groups, parent support groups, parent workshops, and home visits. We quickly saw the difference between Jacob's learning rate and the learning rate of his typically developing deaf peers. We knew we had our work cut out for us. Jacob did make his way through the different classes that were available to his peers, but at a very slow rate. The gap between his developmental age and his peers grew quickly. Many of the staff were supportive of our situation. Many of them suffered for their kindness at the hands of a very "pure deaf" driven administration.
During one of the parent support groups, there was a deaf counselor with a Ph.D. who finally shed some light on the struggle we had experienced. She said she spoke for many at CSDF when she said that deaf children with special needs were not welcome at the school because of the struggle so many of them had recently suffered with the hearing community. She said that it has not been too long ago that Deaf adults had been labeled "Deaf and Dumb" and were given the label of "cannot be educated". She said they were afraid that if people from the hearing community come in and see kids with multiple needs like Jacob, that their community was at risk of being labeled "Deaf and Dumb" all over again. After the initial shock of the statement, I could only feel sorry for the woman who had accomplished so much in the way of educational degree and lacked so much in the true values we can collect over our lifetime. In spite of her degree, she had completely 'missed the boat" in my mind.
After that support group, I knew our time at CSDF was coming to a close. After our second son was born deaf, we received immediate services for him. We quickly saw the difference between his development and the development of our first-born child who had finally received the second diagnosis of autism. For years, we endured grueling IEP meetings for Jacob that lasted for 15 hours over 2 hour intervals which concentrated on convincing us that CSDF was not an appropriate placement for him, because he could not meet the goals that the school was forcing on him. Micah's IEP's lasted under an hour, as the general education program that CSDF provides for normally developing deaf students happened to fit Micah's needs as a typically developing deaf toddler. We could see the HUGE difference in Micah's IEP's and Jacob's IEP's. We could clearly see the discrimination being played out, and we decided to take a look at other programs.
Even though our district had recently invested in a program for children with autism, we all agreed that it would be more effective for the school district to bring the behavior supports to the signing environment, rather than trying to recreate a signing environment within the school district. After all, CSDF was full of signing peers which would be the population in which our deaf with special needs child would most have access to once he learned to communicate with sign language. Our school district had come on board to accept full financial support of any additional services for Jacob on a weekly basis. They were paying the salary for an additional aide to be in Jacob's classroom, as well as a behavior company to come and do both a functional analysis and a behavior support program to meet Jacob's needs in the environment.
We finally left CSDF, broken hearted, after 4 and a half years of struggling to obtain free and appropriate education in Jacob's least restrictive environment. Our "round pegged" child had been pounded into a "square hole" for long enough! It became more and more evident that the passive-aggressive tactics of the administration to cleanse the environment of these deaf children with special needs was only becoming more bold and determined. It became overbearing to even show up at school for family functions as we were had to explain to some of the other parents why we were looking at other programs outside of California. Many families and staff members quietly shook their heads in dismay, paralyzed at the thoughts of rocking their own precarious placement. It was becoming very evident that the administration was very serious about cleansing the environment of special needs sympathizers as well! We witnessed many of the staff who had shown kindness and support during Jacob's time at CSDF mysteriously being passed over for full-time positions and promotions in the system. We could only wonder if their involvement in our son's situation had anything to do with their lack of recognition as outstanding members of the community. They were the "cream of the crop" in our minds!
It became evident that we needed to look at other options to increase the quality of our own lives as well as the lives of our children! We began to realize that not only was Jacob at risk of becoming mistreated in that environment, but that his younger brother would soon understand that he was related to one of the "untouchables" and that his acceptance might be affected by his association. We made our move to a "friendlier sandbox" as much for little Micah as well as big brother Jacob. As we knew there were no signing environments in the local school districts, we looked out of state at other programs for deaf and hard of hearing students.
We want our children to be unified as a family and equally valued as family members; not based on WHAT they can do, but rather who they can become, with the tools they each have to work with... Sounds cheesy perhaps, but we love who these kids are becoming even today, just four years later! We now have a third child who is a typically developing hearing child. The three Cramboys are a delight to their dad and me! We attribute much of who they are, and who we are, to the many families and professionals who have invested in our lives! We still struggle to forgive the hurtful behavior of those who actively erected road blocks on an already impossible journey. We left many precious friends and loved ones behind at CSDF. Many are still struggling to know how to survive in that aggressive environment. Some staff members are still scratching their heads, wondering how they can secretly throw a lifeline to students and families who are struggling without risking being removed themselves, for fear that it would terminate access to other such desperate families. My heart goes out to all of them!
We were heartbroken to hear that one of the teachers that Jacob would have had the year after we left was fired for mistreating some of Jacob's prior classmates. We felt that it was a direct reflection of how stressful things had become for both the staff who had no support, as well as the families who were given less than adequate services for children who so desperately need to be understood and supported. Parents often wonder who has more "special needs" or "deficits"; the children themselves, or those who show so little compassion in such horrific situations. It is certainly food for thought.
On a positive note, some good has come out of the trials we faced in California. In my desperation to build a bridge from deafness to autism, I went back to school for a degree in Special Education at California State University in Hayward. It was there that I collected tools to help work on behavior strategies for kids with autism. I also learned about many valuable tools educators are using to fully INCLUDE students with disabilities with their non-disabled peers! I now hold several credentials which enable me to work as a professional with other families who are told that they have a child with hearing loss and may also have other special needs. The road we have traveled at the mercy of others has been a driving factor in my professional life, as well as the road we continue to travel as a family!
As for the Cramparents and the Cramboys, we will always strive to support others in need, and to increase the quality of life for those around us! We hope to be able to celebrate some kind of "breakthrough" for students and staff at CSDF in the near future! I may never fully understand the "why's" and the "how long" questions many of us face. But we continue to attempt to offer a voice for our children who cannot voice for themselves.
I'm still wondering why services are not in place for these eligible AMERICAN STUDENTS with DISABILITIES who still have active IEP's in an educational facility funded by taxpayers. Why is this institution not yet on board with the educational laws that all school districts are required to follow? Do these laws protecting families and students who are overcoming unspeakable challenges not extend to this specific population? Why are we still allowing these families who face multiple responsibilities to be the primary systems' change agents for FREE AND APPROPRIATE EDUCATION for their precious eligible American students? It is time for the "PURE DEAF" schools to either secure private funding for their elite environment, or allow equal access to the masses needing full access to signed communication.
Families who love their deaf children with special needs are not going to "just go away". Even those of us who have decided to maximize our energy in a different environment are not going to remain quiet about the horrific discrimination that has been allowed for decades at the expense of our children's precious early intervention years! We will be heard. Hopefully, we will find other chords in the rope of education, among other hurting parents with similar experiences, and with professionals who can no longer stomach this mistreatment of families they so faithfully serve. By sharing our stories, one at a time, we will become a reckoning force which will become the plumb line for Special Education within the spectrum of deafness. Children's needs will again become the focus and the target of the funds that have been spent on a select few, in order to preserve a "purist" group. The "show no mercy" attitude that floods the hallways at CSDF, from the administration on down, will eventually be the unfolding of that seemingly powerful institution. Accountability in Special Education should be extended to such STATE schools who are trying to academize their environment as if they were feeder schools to one particular university. The money is in place for the appropriate education of the STUDENTS. The money is not set aside to preserve any ONE way of life or purest group of people.
As human beings, we must reach out to those who cannot reach out for themselves and advocate for quality of life, appropriate education, and hope for the future! We need to teach our children what it will be like to live in a world where we do not create categories for people with the label "untouchable". Everyone has something to contribute in such a life! It's time these issues begin to bother those who find themselves in the category of "To whom it may concern."
Tattered and torn, but not defeated,