We're off to see the Wizard

This was it. This was going to be the year that Emily made great academic strides. I just new it.

We had our transition IEP in the spring, before Kindergarten started. I had some reservations about placing her in a regular ed inclusion class with more than 20 kids. However, I was reassured that she would be fine as there would be an aide in the classroom in case she needed assistance. The first few weeks of Kindergarten were great. While other kids were having to adjust to "big" school, Emily had somewhat of an advantage having been there the previous two years. There was not much academic pressure in those first few weeks. About a month into school, it started to go downhill. Classroom time became extremely difficult. Circle time created anxiety and she would disrupt the class. Transitions were a nightmare. She began spending more time in the resource room as her disruptive behaviors increased. A school based Autism consultant came in to observe and hypothesized the behaviors were attention seeking and task avoidance. Any academic work presented would cause her to throw pencils, paper, hit teachers and run from the room to avoid doing them. She was strapped into a chair for all academic work.  She still refused to do any of the work. After being strapped in the chair and ignored(because they hypothesized it was attention seeking behavior as well as task avoidance) she discovered she could get up and walk around with the chair attached to her bottom. It was at that point that the custodian of the school brought in some plywood and the chair was bolted to the floor so she could not move.  I will never forget the first time I saw it. I had no idea this was happening. I had never had to restrain Emily. This was something that I would not even do to my dog. This was torture for her. I walked into the school once and could hear her screaming from the resource room. I walked in as she was sitting in the chair attempting to do work. She immediately stopped when she saw me. Trying to get her to go to school every day was a nightmare. I would literally have to chase her to get her dressed. Once I got her in the car, she would stare blankly out the window. I hated sending her to school. It was also at that time that the school hired a psychologist(number 4) who worked for an Autism School to come evaluate Emily. I was told by a teacher the Autism diagnosis was doubted and Bipolar was suspected. Emily had just turned 6 years old. The psychologist observed Emily twice at school(since that was the environment where she was having the most difficulty). Scott and I met with her once after her observations. We were told that Emily was clearly on the spectrum. While she had tons of speech, it was mostly scripted. Emily was good at communicating her needs, however her speech was repetitive of things she had heard from movies and environment. She also repetitively asked questions. She would ask the same question over and over as a way of engaging in conversation. The psychologist gave the school many suggestions to help Emily improve while she worked on her written report. It was also noted that Emily needed a one-on-one aid. While Emily's behavior was still difficult, it was not unmanageable. Had it not been for the aid though she would not have lasted through Christmas. We went to Disney World over Christmas break. While most of Emily's behavior issues were related to school, aside from the anxiety, we could take her anywhere. Another indication that something in the school environment was not working for her.

We had an IEP meeting shortly after Christmas. Her aid was due to leave in a month. It was recommended that Emily be taken out of school and placed in a county run school for severe mentally, physically and emotionally disturbed children. I said NO! I begged them to let me come to school with her once again to be her aid. She could do it with the right support. I knew it. They said no. The next offer was a expensive private psychiatric day school which also housed inpatients. Knowing I would never send her there, to be open-minded and work with the school, I agreed to a tour. The preschool department was wonderful. It was cheery and the teachers looked pleasant. Unfortuantely because Emily was 6, she could not be placed in the preschool section. Even though developmentally she was on a 2-3 year old level. They wanted to place her in a classroom with all boys kindergarten through sixth grade where if she misbehaved she would be stripped of all articles of clothing that could be used to harm herself and placed in a padded room.  Here was my  40 pound 6 year old being placed with 12 and 13 year old boys who were mentally unstable. My 6 year old who had NEVER been a threat to herself or anyone else! I said NO and went immediately home and scheduled an appointment with my pediatrician to get her advice. She wrote a letter to the school, stating that those types of facilities were not proper placement for a child like Emily. She was still refusing to do work, so we decided to reduce her days at school. I asked for all academic work to be sent home for me to do with her. Work that she refused to do at school, she would sit for an entire hour and do for me. I even took video of the footage to send to school. We also finally got the report back from the psychologist who had evaluated her in the fall. We had been asking for it for months. I was told on a Friday by the special ed teacher that the report was in her hand and she was taking it home to review over the weekend and I could pick it up on Monday. When I went to pick it up on Monday, I was told that the psychologist had been by to pick up the report so that she could amend some things. Suspicious, but still excited to have the report, I waited. When I got the report I was shocked. It had all of the things she had disscussed with us, but there was something that was NOT mentioned in our meetings. She could not "rule out the possibilty of a mood disorder" and she felt Emily would benefit from specialized placement. I called the psychologist and questioned her. She asked if I was suggesting she changed the report. I said YES!  It was also during that time that Emily had her 6 month neurologist appointment. He also was appalled that this placement was being offered and wrote a letter to the school stating ways that they should help Emily within the school. We also discussed medication options again. I relented to trying Risperdal. The medication I had fought for two years. I felt like I had failed my child. I felt like the school had failed her. Doctors had failed my child.  So I medicated her. Lowest point in my life. I was glad that she was not at school a full day so I could monitor her closely on the medication. We decided to tell very few people so that we could get a true feeling if this medication was helping. Almost instantly I saw a difference. She wasn't the Emily I had known for 6 years. People started commenting on how different and calm she seemed. She was not having as many tantrums and meltdowns. The way she looked at things was as if she were actually focusing and seeing them. However, the medicine was not a cure to her Autism. It only masked it. But because it was making a difference, I kept her on it.  We had our IEP that spring and decided that she would repeat kindergarten. She would be placed in the same class with the same teacher. She finished out the rest of the year with little to no issues and the school paid for summer services to keep her in a routine.

School started back in fall with Emily going all day. It was good for a month until it was deja vu. I was not going to wait around this time. More IEP meetings were called and it was agreed since I refused the offer of alternative schools, that she would be serviced at home. A special ed teacher, general ed teacher and OT would come to my house. She would only go to school for specials and speech. This was perfect. Because of the previous years events, I contacted ADAP(Alabama Disabilities Advocacy Program) to ensure taking her out of school was the right thing for Emily. I was told that since the school seemed to be working with me, that for Emily it was the right thing to do. It was an adjustment for Emily to have to do a few hours of work everyday. She was at home in her comfortable environment, but the academics were still hard. She had to learn two new teachers and it was difficult for me not to step in whenever she balked at doing work. It was not a fix for her behavior. I decided to take her to another psychiatrist(number 5) to try and get some suggestions. I was not seeing the same results on the Risperdal as I did in the first 3 months. I really wanted her off of it. This psychiatrist recommended Zoloft to help with her OCD behaviors. It couldn't be worse than the Risperdal so we started it. This would be a medical nightmare for Emily. Because we couldn't take her off the Risperdal straight away, we decreased the dose and started a low dose of the zoloft. The first two weeks were great, but when we increased the Zoloft all hell broke loose. She was SICK. She would writhe and moan on the floor in pain. I called the Dr and was told that she just needed to adjust and this could take a few weeks. She became WILD. Not like anything I had ever seen. If she were older I would have said she was suicidal. I was told to take her to the hospital and leave her if I was concerned. She was 7 and there was NO way I was dropping her off at a hospital. After several attempts to get something done(because I didn't just want to take her off of the zoloft cold turkey), we finally got her back on the Risperdal only. It took two months for her to get back to "normal". We were advised to make any medication changes during the summer since she was so sensitive. This was the child who had literally climbed the walls after she was given medication to sedate her prior to having her tonsils out. The pain medication she was given after the tonsillectomy made her throw up. Benadryl made her fall asleep standing up. She was highly senstive to meds. Needless to say the academic work during the first few months of homebound services was a bust. Because of the ill effects, her time at school had decreased. She was only going for speech and pe and I stayed with her. She was getting nothing out of it. At that point the school decided to pay for ANOTHER psychologist(number 6) to give us some help in getting her back in school. This one said again she had an Autism Spectrum disorder and there were many ways the school could help her be successful. He offered a list and said he was willing to come into the schools to set it up. For a price of course. This was obviously not the solution the school system was looking for. We met for our annual IEP and I was told that it was in Emily's best interest for her not to return to the Elementary school she had been at for 4 years. THEY WERE KICKING HER OUT OF PUBLIC SCHOOL. I was extremely hurt, but at the same time relieved. I hated sending her knowing the anxiety it caused her. How could she have loved it in preschool and despised it two years in Kindergarten? I was again offered the county school for severely disabled children. Out of options at this point, I agreed to a tour. I was not impressed to say the least. They wanted to place her on a hall with emotionally disturbed kids. She was too high functioning to be placed with other kids on the spectrum. This was all they could offer me. My child who mimics people, being placed with kids who had behavior twice as bad as hers. I saw nothing good from that and said no. The school also wanted to pay for ANOTHER evalution of her over the summer with a neuropsychologist(number 7). At this point I knew they were doctor shopping and not really interested in helping my child. They had been told repeatedly by several different professionals that she had an Autism Spectrum Diagnosis and ways that she should be taught. It was not easy teaching Emily. It was not easy dealing with her behaviors, but I had done it for 7 years and it WAS manageable. In defense of the teachers they did what they thought was right for Emily. I agreed to the evaulation, because it was free and I HOPED that at this point the school would get it. Plus this was a throrough evaluation. They would also be doing an IQ test on her. I was sure to get some answers to questions I had as well.

Emily received summer services again, but this time it was from her homebound teachers. It was decided that if Emily were to transition out of the house, summer school needed to be somewhere outside of the home. I had hoped it would be at another elementary school within the county. It was where I thought she would go since I had said no the the only other option. I was told that the only school open all summer would be the school I had said no to. The county offices were in the same building and people would be there all summer. Plus they had access to the sensory room, gym, etc. Having no choice I said ok. There was a two week break before school started. We had the Neuropych evalution and he had given us a preliminary report based on his observations. He said that she most definately had an Autism Spectrum Disorder as well as anxiety, OCD and SPD. Because I had known after the first psychologist the school paid for, that they were looking for an emotionally disturbed diagnosis, I questioned every single doctor we saw and asked if she could be Bipolar, emotionally disturbed, schizophrenic, etc. If she was, I wanted to know for her sake. He explained to me in detail that a better explanation for her behavior was Tourette's. Emily did not have the typical Tourette symptoms of shouting profanities or noticeable movements. Hers were subtle and what we had chalked up to OCD or Stims in the past. She would go for months doing the same repetitve thing. Even back her first year of Kindergarten she had the most annoying habit if making odd sounds with her mouth/throat. Her special ed teacher even commented once that it was almost like she had Tourette's. Kids with Tourette's often had challenging behaviors. I felt relieved to know that this was IT. I was not taking her anywhere else to be poked, prodded, studied, or observed. She was Emily and there was NOTHING anyone could do to change her. We had to figure out a way to help her nagivate this world that was foreign to her. Not make her change to fit our standards of what she should be doing.

I started calling the school system 2 weeks before school was to start to try and figure out where Emily would be placed. I could not get anyone to call me back. 4 days before school was to start and there was no return phone call or a plan in place for Emily. Fed up I called ADAP back and explained in detail what had happened. They told me to immediately type a letter and deliver it to the previous school and county department of education telling them the Emily's IEP said she was to get services at her zoned school and since I had not received anything stating different she would be there the day school started. They also asked for my permission to request ALL records from the school pertaining to Emily. This was unacceptable. I had a call from the board of education that afternoon telling me that the homebound teachers(who had made other plans) would be returning to my house to service Emily until we could schedule an IEP. I remained in constant contact with ADAP who told me that Emily needed to be in her least restrictive environment and home was not it. When we had our IEP meeting, the Linda Nolen Learning Center was offered once again. It would be a temporary placement. The goal was to get her behavior under control while getting her adjusted to a school environment. She would start slow and gradually increase her days. After just a few short weeks, I was impressed. As much as I hated to admit it, I really liked it. The teachers at this school LOVED their jobs. They loved the kids. Emily seemed to transition well. There were field trips that she was included on without it being mandatory that I went to watch her. Although I have always gone on all field trips for my kids. Swimming field trips!  What kid would not want to go to school here? This was a school for special needs kids and it was the first time in 4 years that I felt like Emily was actually included. I could not sing enough praises about it.

ADAP had been in regular contact with me to make sure things were going well for Emily. They had received all records from the school(this was a MOUND of paperwork from 4 years) and were appalled at the treatment Emily had received. They requested my permission to send the records to an outside Attorney for review. They only handled cases that could be settled without mediation. This was clearly a case that required further investigation. This would not cost us anything. A special education attorney met with us after reviewing the documents. He wanted us to file due process against the school system to get compensation for the lack of services Emily did not receive while she was at the elementary school as well as have her placed in an appropriate school setting with the proper tools for success.  For many reasons I said no. I had so much to consider. Would my son who was only 3 at the time be treated differently when he became school age if we proceeded? How would it affect the current school Emily was placed? I did not want them to be held accountable for any of the previous schools actions. Did I really want Emily placed back into another elementary school that would most likely not be willing or able to handle her? Sure I knew what the law required the school system to provid, but I also needed to think about Emily's well being. What was best for HER? I knew that she needed to be around typical kids, but she had two siblings and we lived in a neighborhood with lots of kids her age. We went out regularly. I wasn't as much concerned with the social aspect as I was with  her learning new skills that would benefit her later in life. This was the school that would do that.

Emily has been at the LNLC for two years now. I am not sure when or if she will ever be transtioned back to a regular school. In all honesty I am not sure I would want her to be transitioned out. If such a time comes, my first choice will be homeschool. Linda Nolen Learning Center is addressing all of the goals that are in her IEP. While I would love to see Emily's academic progress soar, the results of her verbal and non verbal IQ tests have her placed in a Moderate mental deficient range. Even with further testing, which will happen in another 2 years, they do not expect her to ever get above the deficient range. I am ok with this and will continue to push Emily in ALL areas of academics, but my focus on making her learn on a level that her typical peers is on has shifted. I want Emily yo be the best SHE can be. And I want her to be happy. Right now she is doing great and at 9 years old she has matured further than I could have ever imagined. I am SO proud of her.

Thanks for reading!




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