Thursday, January 8, 2009

Long post alert!

At some point I may have to be very careful about what I say in regards to my daughter's school district and all that happened over a three-year period. Obviously I'm not going to reveal the name of the school district or the location other than to say we live in the suburbs near Philadelphia.

Becca began receiving early intervention services through the county at sixteen months and then transitioned to the local I.U. at age three. She then attended a preschool program through an agency that contracted with the I.U. and had related services and therapies both in preschool and at home. Becca loved preschool and I loved sending her there. Not once in three years did I have to worry about her safety or well-being. I chose to provide transportation, and that gave me an opportunity to speak with her teachers frequently and watch her interact with those around her. For three years I felt like I was actually part of the IEP team. I felt my input was valued. Never once did I experience a condescending attitude from a teacher or therapist. If I felt extra services were needed, it wasn't too difficult to obtain them. I never even gave a thought to due process. Our IEP meetings sometimes ran over schedule because everyone had a funny little Becca story to tell. The staff actually cared about Becca and wanted to see her succeed. We had the option of keeping Becca there for one additional year and delaying kindergarten, but everyone thought that she was definitely ready to transition at that point. Our local school district sent a psychologist and a speech therapist to evaluate her. The psychologist's recommendation was regular kindergarten classroom with itinerant autistic support. An IEP was developed that stated Becca "had no behaviors that would impede her learning or the learning of others."

The school district was in the habit of grouping children by diagnosis. Kids with autism went to one school, those with Down Syndrome went to Lifeskills at another school, CP at another, and so on. Inclusion? Least Restrictive Environment? What's that? Even though Becca was to attend a regular classroom, we were told she could only receive autistic support services at one particular school. If we chose our neighborhood school instead, there would be no services for autism. So we reluctantly sent her to the other school, and I attended the kindergarten orientation. I listened to the principal talking down to the parents in the most condescending tone, and I knew we were not off to the best start.

Kindergarten did not resemble anything I remembered from my own childhood. Becca had just spent three years in a preschool program where hands-on learning and free choice of activities were an integral component of the curriculum. There had been plenty of opportunity for movement throughout the day, and circle times had been limited to about fifteen minutes. Now, she was expected to sit for long periods of time at a desk in an environment with a heavy emphasis on academics. The teacher told me that she had informed Becca that she, not Becca, was the only princess in that classroom. Right then and there a battle for control had begun.

There were issues right from the beginning. Early on there was an incident where Becca was wandering around the school and nobody knew where she was. There were several incidents where Becca tried to leave the school, but each time my concerns were brushed off. One Monday afternoon Becca was punished by being made to sit on a wall during recess for some minor infraction that had occurred the previous Friday. She had absolutely no clue why she was being punished. There were meetings; the OT stressed that Becca needed recess each day and that it should never be taken away as a punishment; the teacher sulked. Becca did well academically but began to develop behavior problems we had never seen before as she tried to deal with the sensory overload and increasing demands of keeping up with a regular classroom. In preschool she had had three hours a week for OT with an emphasis on sensory integration, seventy-five minutes each week of speech therapy, and weekly PT. Now, she was getting only "consultation services" for OT and PT, and thirty minutes of speech each week with another child. No surprise she regressed.

There were plenty of other issues, but looking back kindergarten was great in comparison to what would come next. We had decided to place Becca in our neighborhood school, and she would get additional help needed through the learning support resource room. There was no reason to keep her in a school with an autistic support program when she got almost no support from that program. They never even told me they had a social skills class. I heard of it from another parent halfway through the year and had to request that Becca participate. So Becca started attending our neighborhood school. Her teacher with thirty years of experience had never taught a child with autism. She wanted to learn, and she was willing to communicate with me, but her teaching methods were just too rigid. She was too quick to have Becca removed from the classroom at the slightest sign of a problem. The principal was not a disability-friendly person. Other children with disabilities had transferred to this school, had been set up to fail, and had been sent back to their previous schools. I was determined not to let that happen with Becca. The teacher measured Becca's success by how well she fit in with the other children and by how much she acted like them. By those standards, Becca could never succeed. Yet, there was no plan in place to help Becca fit in. The principal insisted that Becca had to have a TSS in order to attend the school. While I was more than happy to have our TSS there and fought to keep the services in place, to require a TSS was against the law.

Midway through the year we saw some very sudden changes in Becca. She started making little noises repeatedly, and they increased rapidly in frequency. One day she looked at me as if she was confused as to why she was making these noises. I knew she could not control what she was doing. I immediately spoke with her pediatrician, then scheduled an appointment with a neurologist. With a family history of Tourette Disorder, I was pretty sure I knew what we were dealing with. But I wasn't prepared for just how she would be impacted. Becca already had issues with OCD, anxiety, and distractability, and Tourette Disorder exacerbated the situation. Becca had been on Zoloft for the OCD, but she began to react badly to it, and her pediatrician felt it might be increasing her tics. In addition, it was making her disinhibited. She began getting discipline notices at school for behaviors that were clearly beyond her control. We got her off Zoloft, but she had to go through a week of horrendous withdrawal symptoms. She suffered tremendously. I really thought we had reached our low point then. I didn't think it could possibly get much worse. The neurologist gave a diagnosis of Tourette Disorder but said she couldn't do anything to help us. I practically fell on the floor. Who was supposed to help us if the neurologist couldn't? She did prescribe Tenex, which actually helped with the tics for a few months.

Apparently there were some meetings about Becca to which I wasn't invited, and it was decided that Becca should see the school psychiatrist. The teacher told me she had attended classes taught by this psychiatrist and thought he was brilliant. She thought he could really help Becca. Desperate for any kind of help we could get, I agreed to the evaluation. In the meantime I received a notice indicating the school wanted to consider the "best placement" for Becca. I immediately called the learning support teacher, who said it was the district's position that Becca should return to her previous school. She gave me no reason why, and couldn't tell me what it was that they could do for Becca in that other school that couldn't be done for her in her current placement. I told her flat out that Becca would never return to that school.

I didn't know at that time that I didn't have to take Becca for the evaluation. I've certainly educated myself on our rights since then. Very early in the evaluation it became clear to me that the psychiatrist was just going to agree with the recommendations of the district. So we spent ninety-five percent of the evaluation with him recommending the change in placement and me explaining why we wouldn't agree. He was very surprised when I told him of our negative experiences at the previous school, and he admitted he hadn't been there for about eight years. He also said thirty years earlier it was the best program around. So there you have it, a psychiatrist recommending a program of which he had no recent knowledge. During the evaluation Becca exhibited one little vocal tic. Her tics had been under control for a few months. But after that one tic, the psychiatrist recommended she could benefit from Haldol. Yeah, that's right, Haldol. Like it's 1965 or something. He quite obviously had no knowledge of the best treatment for children with Tourette Disorder.

The school district knew they couldn't force a change in placement. I threatened due process to get some of the services Becca needed for the following year. The school promised a lot but delivered nothing. The TSS left on maternity leave, and we got a new one who was fabulous. Becca started second grade with a new teacher who was supposed to be more flexible than the previous one. I thought we were off to a great start. A few months into the school year, I learned there was an incident where Becca had impulsively written something on the board, just a few words from a story she had read. Both the classroom teacher and learning support teacher decided she had to be punished. They tried to make her stand on a circle at recess in front of all the other children. She cried because she didn't know what she had done wrong. They told her she had to stand for ten minutes, and she asked them if she could stand for twelve since it's her favorite number. That alone should've told them she had no concept of what was going on. I couldn't believe this had happened because her IEP stated she was not to lose recess. I checked the latest copy of the IEP and saw that that stipulation had been removed. They had pulled a fast one on me! I remembered back when I had signed the IEP, the teacher said she had left the program modifications and specially designed instruction "pretty much the same." I had been fighting so hard to get PT, OT, and evaluations added to the IEP that I just didn't notice that one thing they had removed. It was intentional, and now they were going to use it to their advantage. I was shocked at the message they were sending the other kids as well. How could they get other children to understand and accept Becca's disability if they had her singled out as one of the "bad" kids by punishing her for her disability? I called for an IEP meeting and was accompanied by a lawyer and education consultant. The teachers were petulant and defensive; the spec. ed. supervisor was practically screaming. It was not a pretty scene. But the IEP was changed, and they also agreed to having the teachers trained in educating children with Tourette Disorder (they never followed through, though).

Out TSS was just awesome. I don't know how she stuck it out, though, as there was such hostility toward her since she had intervened when the teachers had tried to punish Becca. That was the beginning of the end for her tenure there. She did amazing work with Becca, most notably setting up a lunch buddy program in a quiet room twice a week. She would facilitate conversation and then encourage the children to play together at recess. This resulted in Becca actually having some real friendships for the first time in her life. The program was so successful that the school decided it shouldn't happen. There seemed to be an issue with anyone else doing anything successfully. They found an excuse to get rid of the TSS just a couple of weeks before the school year ended. I'll elaborate on that in another post. Despite getting rid of the TSS, they didn't have a plan in place to provide Becca with an aide. I had to have the psychiatrist write a note saying it wasn't safe for Becca to return to school without an aide. They immediately provided an aide. I think they knew there would be legal action, as there had been another incident when the TSS was absent and Becca had walked out the side door of the school and was missing for about twenty minutes.

We had another IEP meeting. The spec. ed. supervisor requested a facilitator from the state, and then proceeded to make a fool of herself by screaming at me during the meeting. We had to continue the meeting, and things got even worse. They reluctantly agreed to some of what we wanted, but I had no confidence they would comply. I also learned of an incident where Becca had been sleepy in class and didn't feel well enough to take a reading test. She has low muscle tone and has difficulty sitting up for any length of time, and she was falling asleep in school almost every day. I had already informed the teachers she was being tested for mitochondrial dysfunction. But the teacher was relentless and insisted Becca sit up. Becca had a meltdown, which by the way NEVER happens at home. She has not had a meltdown outside of a classroom setting in YEARS. If she's getting upset, I can diffuse it in 15 seconds flat. The "professionals" at school can't seem to deal with it though. They decided to punish her for getting upset. They punished her by not allowing her to have a friend accompany her to social skills. Um, I thought social interaction was the whole purpose of social skills. To punish her by not allowing her to interact with a friend was just plain cruel. I think that's what did it for me. I knew I couldn't let the situation go on any longer.

While reading over the IEP that I just couldn't sign, I thought back to three years earlier when they had written that Becca had "no behaviors that would impede her learning or the learning of others." Now, they had put in the IEP that she had "subjected the class to outbursts and aggressive behaviors." My little girl, who is the kindest, most caring child I know, was basically being labeled as aggressive. There was no mention of all the times she had been the VICTIM of bullying. Yeah, that was an issue too. She had been taunted and bullied, and there were several children who would just manipulate and take advantage of her. But no, she was the aggressive one.

I was also concerned about how the district had handled behavior issues with other children. I knew they had called the police on a couple of young children with autism. I also knew they liked to get kids placed in "emotional support" classes, and once there, you never got out. We ended the school year without an IEP in place for the following year. Almost immediately Becca's tics all but disappeared, even though she was off her medication. She thrived at summer camp and was relaxed and happy. I had looked into several private schools but found none that I thought were appropriate. But I knew sending her back to that school wasn't an option.

I met a parent who told me about a cyber charter school. His son who had Asperger's was being educated at home through a "virtual school." I was impressed with what he told me. I learned his son was getting excellent services and therapies, the kind of things the school district would never have given us. By the end of the summer I had researched this option and had enrolled Becca. It wasn't easy coming to this decision though. I knew Becca would miss being with other kids. Despite all that had happened she actually liked going to school. I had to talk with her about it, and I didn't want her to think she had done anything wrong. She knows she has autism, and I told her that it wasn't a good school for her because the teachers didn't really understand autism. She told me she would just forgive the teachers. When the day came to start the program at home, she said, "I have an idea. Let's make my autism go away. Then I can go back to my old school."

Becca has adjusted, and I'm thoroughly enjoying the experience. Our IEP meeting was painless. I wore my bathrobe and slippers (it was done over the phone). We basically got everything we asked for, and we got to choose our therapists. I couldn't be more pleased, but it should never have come to this. We are not done with the school district. Their failure to meet Becca's needs and educate her appropriately is being addressed. Stay tuned!

1 comment:

    FYI, I put this WELCOME to HOLLAND on the internet back in 1994 when I was discussing it with the woman who wrote it. She was asked to speak at meetings for women, women with NORMAL children, and she explained she was often asked What is it like to have a downs syndrome child? THIS IS NOT A POEM but something she wrote to try to help others understand a bit about the disappointment felt by those of us who have kids with special needs.

    I hear all the anger here! I totally understand it. When I put up my web site with this WELCOME TO HOLLAND on it, I also included my thoughts of what it was like to have a baby , not expecting any problems and I shared IT IS LIKE GETTING HIT IN THE FACE with a Brick! I said a lot more...........

    Folks, we all have anger and disappointment but if you read the words of this writing, meditate on it, LEARN from it! YES and express your anger to others who understand... can't be totally honest with just anyone for fear of judgement. I agree and understand that. And of course, as our special needs kids grow up, we wouldn't want to tell THEM how painful it was at times would we? I DON't. My daughter is now 30 years old when I first talked to Pearl to get permission to put this on the web. She was a writer for Sesame Street when she did this presentation.

    I AGREE, folks who give it without understanding the pain that goes with it...... BUT READ THE WRITING, Pearl acknowleges that PAIN NEVER NEVER EVER goes away. DWELL on your child's ABILITIES and not the disABILITIES. Get counseling, talk with other parents with the same challenges.

    I can tell you, if you live your lives with only ANGER, your life will be LEMONs only. We must learn how to make lemonade!!

    Linda mother of a special needs child for over 30 years!!! I found Pearl on aol back in 1994 and talked with her personally. HER INTENT in this is to share how disappointed she was... she is trying to be encouraging to people. It is a DEEP WRITING.......... and again, IT WAS NOT A POEM AT ALL..... my 2 cents!
    Linda in Palm Desert CA


Before autism