Wednesday, September 24, 2014

How the Educational System Failed my Son with Autism - Part 3

I arrived early at the school for the IEP meeting, feeling alone, tired, and frustrated. The people who I had looked at as a team and trusted in helping our son succeed in school, I now felt were enemies. I saw no solution that could possibly make me feel any better about Nugget attending this school. I did not know how to work with the team with these strong emotions. I took a deep breath before walking in. I noted that everyone was already present and took the first available seat. No body said a word. I am sure they could see by the look on my face that I wasn't interested in small talk anyway. I was handed the attendance sheet for the meeting and tried to sign it. I was so upset that my hands were shaking as I tried to sign my name and hoped nobody noticed. Nugget's Special Education Coordinator started the meeting by handing out an agenda. As she started talking, I interrupted her and pulled out the pictures of Nugget's bruises and demanded to know who was responsible for hurting my child. The room went quiet, as I made a point to look at each and every person at the table. It seemed like 10 minutes had passed, by the time the Principal spoke up and insisted that no one at school had caused the bruises on Nugget's arms. He further insisted that the "basket method" they used was safe, and an approved intervention. I was quick to tell him that we had never approved to this intervention and it was not in his current IEP. With that, the principal added that they were allowed to use this method if they felt he was endangering himself, or others. It was evident we were not going to agree on this. It was clear that it did not seem to matter that the restraining that had already been occurring had affected Nugget both physically and emotionally.

I laid out the request for a Functional Behavior Analysis (FBA) and Evaluation to be conducted to determine the cause of Nugget's behaviors in the school environment. Although it is required that a school do and FBA when a child's behaviors impedes their learning, or that of others, I was no longer surprised that the school did not suggest doing this to begin with. They already seemed to have lack a general knowledge of autism and the use positive and other proactive interventions. They had already lied about Nugget's first restrain to the MN Department of Education, and it was clear that they would continue on this path. With that, the IEP agenda was set aside. I informed them of the mistrust that my husband and I had with the school and further suggested the only way we would feel safe sending Nugget to school, would be if his BCBA and ABA therapists could come into the school and work with Nugget to make it a positive experience for him and make recommendations to staff. Luckily, this was agreed to and a new meeting would be scheduled to include the BCBA in order to collaborate with the school. In the mean time, the FBA and evaluations would be conducted.

Within a month, a meeting was scheduled with the members of the IEP team, including myself, Nuggets BCBA and one of the ABA therapists that had been working with Nugget at home. For the first time, I felt I had allies at the table. In the short time they had worked with Nugget in the home environment, they had helped him, and us, make so much progress. They were familiar with both Nugget's needs and how he learned, which also included the use of edible reinforcement. A plan was made for the therapists to come into the school and work with Nugget for about three hours per day, starting the following week. During that time, they would work on student skills, such as following instructions, staying seated during work time, walking in the hallways, and social skills during recess. Nugget's para was free to observe in order to learn the effective methods being used. We were relieved knowing that at least Nugget would not be restrained during the time the therapists were present.

Just before Christmas break, another meeting was scheduled to discuss the results of the evaluation and FBA results so a Positive Behavior Intervention Plan (PBIP) could be made and attached to Nuggets IEP. This document would allow for addressing all of Nuggets behaviors and how all staff members would address each behavior consistently. Their had been a lack of consistency in interventions from the school already, which we felt were the main cause of Nuggets behaviors. We felt the PBIP would help in getting Nuggets behaviors reduced by using the same interventions both at home and school. Having received the results from the FBA and evaluation just the night before the meeting the next morning, we had little time to review. We quickly noted that the FBA was missing vital information. It did not tell us what interventions had been used up to that point, and was very inconsistent in the way it was written. We were looking forward to getting some clarification at the meeting the next day. We were disappointed upon arriving when half of the IEP team, including the teacher, was not even present at this meeting, nor did anyone notify us that certain members would not be present. We refused to continue the meeting, and instead went home and drafted a letter to be added as an addendum to Nuggets educational file on why we disputed the FBA.

Following Christmas break, we were contacted by the District office that they would like to meet in private with us to discuss our concerns, without the members of the IEP team. It was clear to us that they had received a copy of the letter we had written to the school in disputing the adequacy of the FBA results. We were hopeful that they were willing to work with us in getting all of our concerns addressed so Nugget could start the second half of the year with a fresh IEP, FBA and PBIP.

We agreed that a daily communication sheet should be sent home with Nugget, to inform us about his day. Given what I had learned about autism, in addition to the parent training I had received in ABA, I knew we needed a good data collection method to track Nugget's behaviors and to also see if these sheets would give any indicators as to when and where the behaviors were most likely to occur, since the FBA had failed to yield this kind of data. We decided to postpone the IEP meeting for further collection of data.

By the beginning of May, the data sheets were indicating that Nugget's only negative behaviors, were occurring when the ABA therapist were not present at the school working with him. We now had proof of when and what kind of behaviors were occurring. Unfortunately, the data sheet did not indicate what interventions the school staff were using, or what was occurring just before and after a behavior. When asked, staff would say they were applying the same interventions as the ABA therapists had been utilizing. When the next IEP meeting was scheduled, we had an advocate attend with us. A new IEP was created along with a PBIP, which entailed the positive interventions staff were to use with Nugget. We were satisfied with how everything looked and signed the new IEP.

One day, Nugget came home with his data sheet. It indicated that Nugget had attempted to throw a chair at one of the staff members who was attempting to put Nugget in a time-out. We questioned why a time-out had been attempted. Nugget's teacher still insisted that a time-out would work and that he needed more consequences. We were confused at how staff could insist they were following the PBIP and using the same methods as the ABA therapists, when a time-out was not a method they used, nor was this a specified intervention in the PBIP. We had also previously indicated that this would not be an effective method, since Nugget would not understand the concept of a time-out. Once again, our concerns were completely ignored and once again, we were growing frustrated with the school. Nugget was also now beginning to bring some new negative behaviors home after being at school. He was starting to slap at our face, pinch and kick whenever he felt upset, or was denied something. Prior to the end of the school year, his behaviors had been reduced to 1-2 times per week with the ABA therapy. Now they were daily as we could see his frustration growing as well.

We felt Nugget's Kindergarten year was a complete failure. We were devastated knowing that every behavior was a teachable moment that had only served to increase his behaviors, instead of reduce them. We were further concerned that this was Nugget's learned behaviors for school since these behaviors were allowed to continue in the school environment for the entire year without improving. They had become a pattern. We continued to have hope and he would still be receiving in-home ABA therapy throughout the summer. I felt I could not let his Kindergarten teacher go without telling her how I felt. I had held it in for so long. The thought of another child, like Nugget, entering her class, was unbearable. I sent her an email expressing my feelings and dreaded Nugget starting first grade in September.

Please stay tuned for "How the Educational System Failed my Son with Autism - Part 4