Sunday, September 7, 2014

How the Educational System Failed my Son with Autism - Part 1

When Nugget started preschool, I was that mom who always brought a box of doughnuts or cookies to an IEP meeting. We were, after all, a team and I wished to show my appreciation for everything the school staff would do for my son. At that time, I was not interested in education laws, such as the Individuals with Disabilities Educational Act (IDEA). I looked up to school staff, I trusted them and I was very appreciative of their efforts in providing for Nuggets needs - and he had lots of them. As educators, I thought these individuals had more knowledge than I did about autism. I thought that I should be able to trust that they knew how to effectively help my child in the educational setting. Equally, they seemed interested in how well I knew my son and seemed appreciative of the tips I could offer on how to work with Nugget.

Nugget was diagnosed with autism and global developmental delay during his preschool year. His speech was significantly delayed. When requesting milk, he would often just utter a "k" sound. Otherwise, he would often just grab my hand and pull me to the refrigerator and point to what he wanted. In addition, we had tons of behavioral issues that were often expressed in the form of severe aggression, including hitting, kicking, and biting. The aggression would often occur when we would request him to do something as simple as sitting at the dinner table with us, or try to engage with him. It seemed he just wanted to be left alone and play on his Nintendo DS.  I can't tell you how many times I took a shower, just to be able to have 5 minutes alone, so I could cry. Emotionally, I was overwhelmed with exhaustion and devastation, and I knew my son needed help. Physically, I was being attacked and beat up by my son. His behavior was out of control.

Going forward, my husband and I spent a lot of time doing tons of research, attending many seminars and classes on autism. As a matter of fact, we attended any and all seminars and classes in the area. We were determined to help our child by learning about autism and proven interventions. In addition, Nugget qualified for a mental health case worker through our county and medical assistance (MA). His case worker informed us that the county would cover in-home ABA therapy for Nugget and she knew of a local organization that had current openings for new clients. Within a week, we had a BCBA at our home getting us set up for in-home ABA therapy for Nugget. Nugget would be receiving intense daily therapy, up to 30-40 hours a week. This, to us, was a godsend. We were hopeful and excited about the outlook for Nuggets future for the first time. The preschool year had been pretty rough, with numerous daily behaviors in the classroom and at home.

That summer we prepared for Nugget starting kindergarten and in-home ABA therapy. Due to his schedule, he would only be attending half day kindergarten since he would come home after lunch and receive ABA therapy. We met the school staff and informed them of the good news. They seemed pretty excited for us and it was written into his IEP that Nugget would attend kindergarten only in the morning since we, the parents, had enrolled him into in-home ABA therapy. We met his kindergarten teacher at Open House and felt confident since she indicated that she was familiar with working with children with ASD. No one could prepare us for the challenging year that lay ahead.

Already the first week of kindergarten, we were receiving emails from his teacher about all the "bad" things Nugget was doing in the classroom, "he can't sit still"; "he doesn't follow instructions"; "he is disturbing the other children", and the list goes on. We were confused. Wasn't this the teacher that said she was familiar with working with children with ASD? Shouldn't she know that the very things she is complaining about are common ASD challenges in the classroom, not to mention, even for any neurotypical child in this age group? We quickly realized that this teacher had absolutely no knowledge of who our son was, or even the most commonly displayed traits of autism. A couple of weeks later, we were horrified to learn that Nugget, instead of using the classroom bathroom as agreed on and stated in his IEP, had "lost his hallway bathroom privileges", when he was found by his kindergarten teacher climbing the bathroom stall walls. As his parents we were concerned about why he was using the hallway bathroom, further confused about where his 1:1 para was at the time, and also at the possibility that he could have gotten significantly injured. The only concern his teacher had was that he, once again, was bothering other students and the fact that she had to pull her skirt up to wedge herself under the stall door to get a hold of Nugget since he was trying to avoid her.

Meanwhile, Nugget was making great progress at home with his ABA therapy. His aggressive behaviors had started to decline. I received parent training in the ABA methods that were effective with Nugget and, as a family, we started using these consistently at home. His aggressive behaviors at school were increasing daily. We called for an IEP meeting to address the concerns of Nuggets behaviors at school and to further suggest that the school start using the ABA methods that were proven effective with Nugget at home. We were hoping that we would see a reduction in Nuggets behaviors at school as well, since we would all be using the same methods consistently.

Once again, I brought doughnuts to the meeting. Even though, by this time, I absolutely despised his kindergarten teacher, I decided to put on a smile and work together with the IEP team to Nugget's benefit. After all, my feelings had no place there. It was about Nugget and his needs. I was shocked at the resistance from the team when I made suggestions to use ABA methods at school. The principal suggested that Nugget go out and swing on the playground when he was having a meltdown. Really? You want to "reward" Nugget for his behaviors by teaching him to have a meltdown so he can go swing? How about we work on his communication and give him some PECS when he is in need of a break? The kindergarten teacher added that she thought he needed more consequences. I was shocked and frustrated by the end of the meeting, the only thing we had actually been able to agree to was starting the use of a 5-point scale. I was shocked because, after learning about the effectiveness of ABA and other positive interventions, it appeared the school staff had minimal knowledge of effective strategies for autism. These are the same people I trusted in helping my son. The same people, until I learned, were the ones that were supposed to have this knowledge. At that point it was clear to me why Nugget's aggressive behaviors at school were increasing instead of decreasing. I hurt for my son. I knew it wasn't him, it was the people who were supposed to be helping him at school.

The following week, as I was getting Nugget ready for bed, I noticed some bruises on his upper left arm. I looked at both arms. He also had a matching bruise on his upper right arm. What in the world? Had something happened at recess? How did he get these? I asked Nugget if he got hurt at school. He immediately started crying and yelling that "The Principal squeezed me really hard!". I was horrified and furious. What had they done to my son? Since it was evening, I immediately sent an email to the school, including the IEP team, requesting to know how my son received matching bruises on his upper arms. I also informed them of what Nugget had told me.......

Stay tuned for the continuation of "How the Educational System Failed my Son With Autism - Part 2"

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