Future Reflections Special Issue on Advocacy
by Terri O'Neill
From the Editor: For most families of blind children, a public school education seems to be the best option. However, for a variety of reasons, a growing number of families choose to homeschool their blind children. Despite resistance from her local school district, Terri O'Neill of California was determined to homeschool her daughter, who is blind and has additional disabilities. Here is her story.
By the time our youngest child entered our lives, my husband and I were seasoned homeschoolers with eleven years of experience. We knew how well individualized learning can work. Our views on education and our ways of working with our children evolved over the years. When Jeni came to us, I had no doubt that we would find a way to get her what she needed in order to be successful.
Jeni has bilateral anophthalmia, which means that she was born without eyes. She entered our lives as a foster child, a severely neglected infant. From the beginning we were involved with social workers and government agencies. At first every decision we made had to be approved by someone outside the family--even something as simple as whether we could trim Jeni's hair.
Despite our confidence, we were overwhelmed by all that we had to learn and by the array of treatments and services Jeni required. The treatments for her eye condition involved hundred-mile trips to an oculist every two weeks during our first year together and several surgeries after that. Meanwhile, groups of people flocked to the house to work with Jeni and talk to me. At first I had no idea who these people were or why they had come. I was simply trying to learn about my child's medical conditions and bring her back to life.
After a very rocky first week, Jeni responded miraculously to love and affection. Gradually we settled into a routine. As I became more comfortable with Jeni's needs, I focused on our frequent visitors. I learned that they came from our school district's early intervention program. Jeni had an IFSP (Individualized Family Service Plan). Our visitors were occupational therapists, speech therapists, play therapists, and a teacher of the visually impaired (TVI). And a public health nurse. And a social worker from Child Protective Services (CPS). And a social worker from the foster care agency.
In the beginning, the professionals determined everything that was in Jeni's IFSP. I did not understand it, and honestly I wasn't worried about it right then. My job was to love this child back into life. And it was working.
As time went on, however, I started to ask questions. My family was seriously overscheduled, and most of the sessions seemed to be repetitious. I requested that at least one of the therapists stop coming, and no one argued. That was our first victory!
Shortly after Jeni arrived in our family, we were given "educational rights," meaning that we could make decisions about her education. We knew that in reality this meant we were authorized to agree to the program developed by the school district. We wanted desperately to adopt this little girl, and adoption procedures were our priority. The involvement of the public school system in our lives was of little importance at that point. Court hearings about Jeni's future kept me busy and stressed.
Eighteen months later, when Jeni's adoption was finalized, we felt we could be more vocal about what we needed and didn't need. I was very concerned about Jeni's failure to meet developmental milestones. She was two years old, and still she was not sitting on her own. The answer from the doctors and other professionals was always the same: "It's because she's blind." I grew up with an uncle who is an independent blind man, and I knew that blindness by itself does not cause developmental delays.
I had been asking for physical therapy (PT) to address Jeni's weakness, and I had been told that she didn't need it yet. Now I grew more insistent, and PT was finally included in her IFSP. I also went on a search and destroy mission to find a neurologist who would not dismiss Jeni's symptoms as blindness issues. When she was three years old she was diagnosed with cerebral palsy. It felt good to know that my instincts were validated. The diagnosis allowed us to increase Jeni's PT. Now we had something concrete to research, and we found several therapies that have proven helpful.
When Jeni turned three the school district made a big push to put her into preschool. Having homeschooled two older children from the start of their education, we fully intended to do the same with Jeni. The district's idea of the "least restrictive environment" was a classroom with fifteen other children who had speech and developmental delays. Jeni would have to be bused twenty miles each way to attend this program. The arrangement might have been convenient for the system, but I did not want to imagine my three-year-old in this environment for several hours a day. Politely we declined the district's offer of free and appropriate public education (FAPE).
In the end Jeni's IEP included TVI services, occupational therapy, speech therapy, and physical therapy. I would take her to a school site to receive all of these services. I was fine with this arrangement, with the exception of the physical therapy portion. The school district contracted with an itinerant physical therapist and did not have a gym or equipment for him to use. At home we have a veritable therapy room. I asked for and was given permission to have PT at home so the therapist could use our equipment.
At three Jeni still was not talking or eating solid food. I was unhappy with her lack of progress, and I didn't care for the way the speech therapist worked with her. In my research I ran across information on music therapy, and it sounded like a good fit for Jeni. I will always be grateful to our wonderful music therapist, who was able to activate a critical part of Jeni's brain. We actually saw results after the very first session.
After a month of private sessions, which we paid for ourselves, I asked the school district to discontinue traditional speech therapy and include music therapy in Jeni's IEP. I had to do a lot of research about IEPs and alternative therapies, and I submitted copies of several relevant documents, including legal statutes. Nothing in the law forbids a school district from including music therapy in an IEP. After a long meeting, the district agreed to a trial of music therapy for one month. When we reconvened to evaluate Jeni's progress, everyone readily admitted that she had made improvements. We were granted music therapy for another four weeks. For several months we went through a series of similar evaluations and authorizations. Finally, since everyone agreed that music therapy was making a difference, I insisted that we put an end to the monthly meetings by writing it into Jeni's IEP. No one argued, and we had another advocacy victory.
Our next big hurdle was the IEP scheduled in the spring before Jeni's fifth birthday. It was time for kindergarten. We listened politely to the special education teacher, school board, and school district administrators as they lectured us again on the importance of putting Jeni into their program. I told them I had no intention of putting her into kindergarten. The district even offered to mainstream Jeni with an aide--something they had never suggested in the past. Once again we stated our intention to homeschool her as we had our other children.
I asked for orientation and mobility services to be included in Jeni's IEP. In the past the O&M provider had declined to work with her, claiming that she was "too young and couldn't walk." Now an evaluation was ordered. It was conducted by the same gentleman who had refused to work with us earlier. This time he agreed to work with Jeni, but he dismissed my desire to get her a cane and familiarize her with it. So I did it myself. Thanks to more research I found Joe Cutter's terrific, parent-friendly book, Independent Movement and Travel in Blind Children, which demystifies the field of O&M. With the help of the Free White Cane Program of the National Federation of the Blind, I obtained a child-sized cane for Jeni. She was delighted with her cane! It expanded her world. She was still not independently mobile, and the cane extended her reach. That was huge for her. It also gave her more incentive and confidence to move around.
During the year before mandatory school age, I began shopping around for a charter school. I tried to enroll Jeni in the public charter my other children were in. I was shocked by the unhelpful attitude we encountered and the negative statements we heard from the special education administrators. In the end, they refused to accept Jeni as a student.
Next I talked with another school we had been involved with years before. After a few meetings with the principal, this school agreed to send someone to Jeni's transitional IEP meeting. The school has classes that the children can attend if desired. Each student is assigned a teacher who works with the parents on an as-needed basis. At the beginning of each semester, the parents sign a contract that lists what the student will work on and outlines the parents' and teacher's responsibilities. A monthly meeting with the teacher is required, but meetings can be arranged as often as once a week.
Until this point our IEP meetings had been arduous, emotional ordeals that never lasted less than two hours. On a few occasions the meetings continued into a second day. In contrast, the transitional meeting was positive and encouraging. I left feeling inspired, hopeful that we had finally convinced the powers that be that nontraditional methods of educating children can be appropriate and successful.
That meeting took place in April. In August, the school requested a brief meeting to set up dates and times for Jeni's various service providers. It quickly became apparent that the school had never dealt with a child with multiple disabilities, one of which was blindness. Everyone was very afraid of "doing something wrong."
At that point Jeni was receiving over six hours of therapy and instruction a week--Braille, O&M, occupational therapy, music therapy, and physical therapy. We were very aware that this was too much for her. Her already erratic sleep habits were growing worse with the stress of an overscheduled life. We asked to reduce some of her services to monthly consultations. We would incorporate the activities into daily life, where they made sense and could be useful.
Most of the therapists were willing to support our approach. They knew how involved we were in working with Jeni outside of therapy time. However, the school district administrators were uncomfortable with our request, and we spent the next school year fighting. Often I received verbal compliments from personnel on what a good job I was doing and how much progress they saw with Jeni. But the same people would not back me up in meetings with the school district authorities or the county Office of Education.
Within our school system, even an IEP is pretty standard. If a child has a particular set of issues, he/she gets a particular set of therapies. Sadly, it is often forgotten that the "I" in IEP stands for "individualized." Heaven help the family that steps up to advocate for anything more, less, or different from the program the school wants to provide.
The answer to my request for a reduction in Jeni's services came in the form of more paperwork and more frequent IEP meetings to check on her progress. We underwent this extra monitoring even though we had weekly meetings with the teacher and submitted monthly progress reports to the school. The district even requested that the special education teacher observe me teaching Braille to Jeni. The teacher didn't know Braille, so I'm not sure what she was able to observe and report.
The policing visits and paperwork felt invasive. Nothing fires me up as much as hearing people tell me they know better than I do how to raise my children. None of the professionals involved with Jeni had experience with a blind, developmentally delayed child with cerebral palsy. I was by far the expert on her; yet the school officials could not acknowledge publicly that a parent might provide an education as good as or better than anything the "experts" had to offer.
We had spent six years working with and learning from all types of therapists. We had assimilated a great deal of hands-on experience, and we were able to apply our knowledge to help Jeni continue in her development. The only service we felt we needed on a regular basis was physical therapy. In the end we decided it was not worth the hassle, emotional turmoil, and paperwork to get this service through the district. We filed a private school affidavit, wrote our own IEP, and paid for physical therapy ourselves.
That decision was our final turning point. We had given the system a chance, but we just could not agree on the best course of action for Jeni. So we cut our ties with the district.
Simple? Only in theory. Even after I sent in my letter of withdrawal, the district still tried to set up meetings with us. I politely refused. I knew the law, and I took each step with confidence. Even so, there were times when I was terrified that someone would threaten to get CPS involved. Due to Jeni's beginnings, we were firmly embedded in the public system, and getting out was difficult and a little scary. We joined the Home School Legal Defense Association for protection.
Having the freedom to create an environment where Jeni can thrive has been worth all the struggle. This year we have seen tremendous growth--academically, socially, and, most important to me, in the areas of life skills and independence.
Since becoming the parent of a child with special needs, I've had to learn to advocate, to speak up, and to be assertive. I was not used to doing these things before Jeni joined our family, and none of it comes to me naturally. But for our children, we parents can learn to do whatever is necessary.