Follow the Yellow Brick Road

After Emily was diagnosed we immediately set up a meeting with the local school system to have them test her as well and find out what services she would receive. As much as the previous 3 almost 4 years had been a struggle, I could finally see the light. My oldest was in private kindergarten and I was struggling with the decision to send her to public school for first grade. After finding out that Emily would receive services at the same school, I felt it was a message from God. Anna Grace and Emily both at the same school. They recommended Emily go 5 days a week. All day. I was taken aback. Did she really need to go full time? She was not yet 4. I wasn't looking for a babysitter. I resisted their recommendations and we agreed to 4 half days a week. She would receive speech and OT at school. Surely she would "catch up" in no time. I was still in a bit of the denial/overwhelmed phase where I just knew she would outgrow it with all of the therapy. We were on the Yellow Brick Road to recovery. So I thought.

She was placed in an inclusion class with 8 kids, one teacher and two aides. I could not have been more pleased with the environment. She loved school. Her days were not always great and anxiety was still really bad. She refused to do much, if any, academic work. She still could not grasp the concept of learning. However, she got acclimated in the big school and that was reassuring. We decided not to push her on the academics(it was just preschool) and focus on sitting for circle time, transitioning, etc. I had people come up to me and ask if I was sure she had any type of disability, because they would see her in the halls doing wonderful. She was a social butterfly when it came to adults.

They gave me a list of resources when Emily was diagnosed. Making an appointment with a Neurologist was the first thing I did. After all, I had already seen two psychologists and they were not really of any help to me. We waited over an hour for the Neurologist to come into the room. He asked Emily a few questions, said she had Aspergers and tried to write me a prescription for some medication. All within 15 minutes. I was shocked. Could NO ONE give me some ideas to help ease her daily life? I had been ignored the first 4 years and now I was being told to medicate my 4 year old with an antipsychotic medication. I also had strong questions about his diagnosis. I was told by the evaluating team at Mitchell's Place that while she was somewhere on the spectrum, she most definitely did not have aspergers based on her intelligence. Here was a neurologist telling me something different based on the fact that she was verbal. I refused the medication and walked out feeling let down by the medical field AGAIN. I still had no idea how to help my child. The school was doing amazing work with her, but the anxiety was horrific.

Over the Christmas break I decided to take her to a psychiatrist. He seemed very interested in Emily and the fact that her anxiety was so intense. I thought maybe, just maybe this was my ticket to help her. I was instructed to keep a two week journal of all behaviors and report back to him. When we met back with him in January, I was proud to show him the detailed journal. However, he told me that he did not need to see it and handed me a prescription for an anti-depressant. Shocked,7 months pregnant and exhausted, I just took the prescription and said we would make a follow up appointment. I immediately called my pharmacy when we got home and requested information on Risperdal and the SSRI the psychiatrist recommended. No way was I blindly medicating a four year old. I didn't want to mask the problem, I wanted a solution. She was still pulling her hair and refused to be buckled in a car seat. Another issue that I had been battling since transitioning her to a bigger car seat the summer before. During the midst of all of the reading and searching for answers, my blood pressure became dangerously high and I had to deliver my third child 6 weeks early. It was all I could do just to get through each day with 3 children.

I had been reading "The Autism Sourcebook" and had learned some really useful information. ABA therapy was mentioned as a scientific method to helping kids on the spectrum. They suggested 40 hours a week. There was no way we could afford 40 hours as our insurance did not cover it, so we started less than 10 hours a week of ABA that summer. I thought it was good to have something to fill in the break from school. ABA was a huge help. After almost a year of refusing(kicking, screaming, pulling hair, unbuckling,etc) to be buckled in a car seat, the therapist was successful in getting her to buckle again in a short amount of time. I owed her my life. Our lives. I had been called everything but an unfit mother because she was not buckled in a car seat. When school started back the following year, we decided to keep the half days and continue with ABA in the afternoons.

I really thought this next school year was going to be wonderful. She was in the same preschool class with the same teachers and several of the same friends. However, learning was still difficult for her. It created so much anxiety just by asking her to do simple activities. More focus was placed on the transitions and social interactions and lessening her anxiety. She LOVED going to school. She would ask every day if she could stay for nap time. The teachers were wonderful with her, but there was nothing anyone could do for her anxiety. In February of that school year we had our regular six month appointment with the neurologist. He again offered us Risperdal to help her with the debilitating behaviors associated with the anxiety and autism. I again refused. She was only 5. He offered us Buspar as an alternative. It was an anti anxiety medication with few side effects and was non habit forming. It seemed like something that she could benefit from so we tried it. It did lessen her hair pulling and for that I was grateful. However, it was not a cure for her autism, nor did it make her anxiety disappear completely. But because I did see some improvements, we kept her on it. She finished the school year out with little to no improvements academically and still no pattern to her behaviors. We had a transition meeting for Kindergarten before school was out. She would attend the same school and would be placed in a regular Kindergarten inclusion class. My baby was going to Kindergarten!