Sunday, June 8, 2014

Julianna, Part 10: More School Nightmares

After securing services from the regional center, I felt like Julianna's future was brighter than ever. Even though she did not receive a diagnosis of autism, her case worker, after talking with me about what I thought she needed, went into the autism team and fought for Julianna to get ABA. Typically, only children with autism get this service, but my amazing case worker was able to convice the team that Julianna needed it, too. Soon we would be meeting with the ABA provider and getting it started during the upcoming summer, 2011. I also found out she would be receiving 30 hours a month of respite care, which is like a childcare service where someone comes to play with your child to give you "respite" or relief. After 7 1/2 years of battling schools and the regional center, respite was exactly what I needed!

Julianna was nearing the end of her 1st grade year in an academic SDC class, grades 1-5, and was mainstreamed into the regular classroom for about 50% of the day. The progress she made during this school year was astonishing. She was catching on to her math, her reading was soaring, and her handwriting improved dramatically. She was also starting to become a little more social. At the end of this school year, we had an IEP meeting to make sure things were in place for next year. I was told that nothing would be changing, and that she would have the exact set up as this year. Things could not be better. School was figured out for the time being, and now regional center would be helping, which means our home situation would improve.

The ABA therapy started in July of that summer, and Julianna loved the extra one on one time with her therapist. We worked on lots of things and made goals in many areas, like zippering a jacket, tying shoes, brushing teeth, buttoning pants and shirts, asking questions more appropriately, the list went on and on. I began to see how behind she was in life skills, and realized that I did too much for her, because teaching her simple tasks around the home was just too challenging. But working with these therapists, I learned how to write out the steps of a task, and how to teach it appropriately. The person over her case also met with me regularly to talk about how things were going, and revise and write any goals that were needed. This ABA therapy was so eye-opening to me, and exactly what Julianna needed to progress. I only wished she had had it back when she was three, the first time we applied for services, but there was no changing the past, so we had to work with her where she was now, and help her catch up.

During that summer, she also saw a neurologist. It had been a while since she had seen one, and I wanted to ask him specifically about her extreme tantrums and self-injurious behaviors that didn't seem to improve. After talking with him, he suggested using medication. I had never done it before, and was always very reluctant, but he pointed out that using medication along with therapy really helps to see progress. He gave me some suggestions of what we could try, and I did some research. It took a long time for us to decide to do it, over a month, but Joel and I finally said it was worth a try, and she began a small dose of medication shortly before she started 2nd grade. I won't give the name of the medication, because I don't want anyone to assume that they would have the same experience, but starting this was a huge leap of faith for us, but something that we also felt was necessary at the time to control her behaviors that were becoming worse.

So the summer was coming to an end, and about a week before, I felt like I should email the principal and special education director (the lovely Mrs. Fox was still holding the position) and her teacher to make sure things were still in place. Blake was also starting kindergarten that year, so it was an exciting time for him as well. Anyway, I got an email back, saying that there had been some changes over the summer, that Mrs. Fox had decided that they wanted to change the entire SDC program by doing what was called "full inclusion." Without notifying the parents, without changing IEPs, without any word at all, this change was made, and it would be affecting all students like Julianna (higher functioning). Basically, they decided to get rid of the wonderful academic SDC class she had made so much progress in, and place her in a regular 2nd grade classroom with some support during the day. So she would be going from a very small class of about 10, to a large class of 30 or more. None of the general education teachers were certified in special education, so to "solve" this problem, I was told by one of my friends who is a teacher in the district, that they had one training session over the summer to get them ready to teach these SDC students. Most teachers that I knew were NOT happy with this change, and did not see how it would work out. But this is what Mrs. Fox thought was best for the students, and even felt like they were doing something revolutionary, in a way. I was assured that it would be a trial period of a year, and if it didn't seem to work, they would go back to the old model (or so they said).

This created all kinds of problems. First of all, Julianna does not know how to walk to her line in the morning. And no one was there to help her before school started. So I would bring Blake to his kindergarten class, and then wait with Julianna for the bell to ring before she would go to class. Her teacher was very young, and had a large class. I observed about once a week to see how it was going for Julianna. From what I saw, it was not good at all. She would sit at her desk, with her head down, and seemed like she was scared to death. Then, to make matters worse, only three weeks into the school year, her teacher had to suddenly move out of state, so until they could find a permanent replacement, there was a substitute teacher. I could tell things were going downhill very fast for her. Handwriting was getting worse, schoolwork was suffering, and though she was on medication and receiving therapy, her behaviors were not improving at all. Something had to change, and from what I had heard, there was no way I would get that old class back for her. The small academic SDC class was gone, and there was nothing I could do. I had to figure out how Julianna could learn best, and my solution was something I had never thought I would consider, and what I was scared to death of trying

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