Asperger’s Syndrome: Finding the Center of the Storm, Part 2

By blog contributer, Catherine Dooley

Part 2 of 2

My humble prayers were answered as I spoke with a friend of church.  As I described my son’s struggles and his odd behaviors, she asked me if I had taken him in to be tested for Asperger’s syndrome. I didn’t know what Asperger’s was, so I asked her to elaborate. She explained to me that Asperger’s syndrome is a type of pervasive development disorder (PDD). It is a group of conditions that involve delays in the development of many basic skills, most markedly, the abilities to socialize, communicate, and use imagination. I quickly started reading everything I could get my hands on having to do with this disorder.

“Confusion of Circles” by Steve Crane

Recognizing that Zachary exhibited many of the indicators, my next step was finding out where to go for testing. I started with the family doctor. While at the appointment I asked about getting Zachary tested for Asperger’s syndrome. What the doctor said to me took me by complete surprise. She said “he doesn’t look autistic”. What in the world was that supposed to mean? Does an autistic child have a third eye, or a giant horn that would distinguish them from the general public? Clearly, I had reached a road block. After weeks of continuous searching for a Doctor I said a little pray to help me find the right one for us. I sat down to my computer to start another search and while searching the internet, a name jumped out at me. I picked up the phone and set him up for the first available appointment. Unfortunately, Zachary would be back in school before then. Shortly after school started we had our first appointment with Dr. Moore. We talked about all of Zachary’s issues. She asked me a series of questions and set another appointment. Confused a little, I asked if we were going to do any testing for him. She smiled at me and said that she already did. What? She didn’t need all of the history from the schools or any other form of documentation? Subsequently, she referred us to a psychologist to have additional and more extensive testing done. The psychologist we went to discovered that Zachary had problems with fine-motor skills (holding pencils, buttoning buttons, tying shoes, etc…), sensory overload to sounds/lights/movement, cognitive processing difficulties (answering questions, extreme literalness , etc.), communication (proper eye contact, two-way conversing, etc…) and the fact that he was hypertonic, which can cause clumsiness due to low muscle tone. After four appointments, Zachary received the diagnosis of Asperger’s Syndrome couple with Attention Deficit Disorder. Dr. Moore wrote a detailed letter to the school describing Zachary’s problems suggesting the methods of assistance he required. I laugh now at the reality of how naïve I was when I thought the school would simply hand over this recommended support. Over the remainder of his 4th grade year, I repeatedly petitioned the school pertaining to Zachary’s disabilities. Again, they referred to his grades and deny him with the explanation that his IQ was too high for them to provide assistance. Note that Zachary’s grades were within decent range because we were spending countless hours over shoulder at home. There is nothing wrong with assisting a child with homework, but we were having to spend several hours every night baby-stepping him through his assignments.

It became impossible for us to dedicate this much focus on Zachary as our younger children became school age. My 3rd son, Brandon, experienced difficulty in kindergarten and was diagnosed with ADHD (Attention Deficit Hyper Activity Disorder). Because of how severe it was in Brandon’s case, his academics also necessitated a lot of our attention. This was difficult because our assistance with Zachary had been helping him to maintain his self-esteem. However, this was obviously a blessing from above for us. As a result of Zachary having to carry himself a bit more, the school got a more accurate picture of Zachary’s inadequacies. He began to fall behind and the school initiated his enrollment in the Tier 3 Intervention Program. Even though progress was made that addressed his disabilities, the program didn’t provide sufficient support for him. Overcoming a bit of resistance, I pressed forward for more as I attended bi-weekly meetings. Together with the doctors and school administration officials, we worked to establish academic goals for Zachary often discussing successes and failures of the interventions program.

As the school indeed made progress in their efforts, they overlooked Zachary’s social struggles. When social issues affect a child at school and in the classroom, the school system is required to also address those issues. One related characteristic we noticed was that the smallest change in Zachary’s routine or surrounding atmosphere would send him into severe emotional breakdowns. For example, Zachary had bronchitis in the fifth grade and was required to stay home for a few days. Upon his returning to the school, Zachary was informed by the principal that he had a substitute teacher teaching his class that day. Less than an hour later the school secretary called me saying that Zachary needed to go home for the day. She provided little explanation but I could hear him crying in the background. He was still crying when I arrived, but I calmed him enough to find out that they had changed the layout of the desks in his room, he didn’t know where to sit and his classmates were acting out because there was a substitute teacher. As a result, he panicked and had a serious meltdown. On the way home, a devastated Zachary begged me to never take him back to school.

After several such instances, the school evaluation board decided to upgrade Zachary to a 504 Plan, which refers to Section 504 of the Rehabilitation Act. This law specifies that no one with a disability can be excluded from participating in federally funded programs or activities, including elementary, secondary or postsecondary institutions. This enabled the creation of a list of specific instructions pertaining to Zachary’s individual emotional, physical and academic needs. For example, before the seating arrangement can be altered, they would have to prepare Zachary for the change. By the end of his grade year, the school concluded that the 504 didn’t cover all of his needs and recognized the need to upgrade his assistance to an IEP, which stands for Independent Education Program. It is a federal program through IDEA (Individuals with Disabilities Education Act), which, in summary, states the following: Children with Other Health Impairments such as having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli that results in limited alertness with respect to the educational environment, is eligible for special services to help the child address his or her educational, developmental, and functional needs resulting from the disability. I hoped this indicated the end of six years of hardships and that the situation was easing up.

“Absract Polaroid” by Kevin Dean

Because of the instability of the economy, we moved across the country. Though Zachary’s 504 stayed in place, the battle for the IEP started back at square one. Again, we faced resistance and his new school also denied him based on his IQ. Zachary recently moved up to middle school and we hope for better results this year. From this I have learned three indisputable truths:

First, schools are given a federal grant for any child registered at their schools who is medically diagnosed with such a disability. The school is expected to use this grant money for the child’s needs, but may use leftover funds for bettering the school’s overall grade point average.

Second, schools will place their financial interests ahead of doing what’s needed for children like Zachary.

Third, that through all these hardships God has given me the strength to persevere. I am often humbled by the trust that Father in Heaven has given me. When I feel I am inadequate for the job, I am reminded of the promises given to me in Ether 12:27 of the Book of Mormon:

“And if men come unto me I will show unto them their weakness that they may be humble; and my grace is sufficient for all men that humble themselves before me; for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them.”

I know that I am blessed to have Father in Heaven who sustains me through my calling as a mother, and sacrificed his son to suffer my afflictions and sorrow that he may know how to succor me.

Though the work is never complete, I am convinced that a parent truly is a child’s most valuable advocate. I encourage all parents, grandparents and guardians to become proactive and educated concerning their child’s disabilities and the schools responsibilities. If you don’t who will?

Zachary is now a 12 year-old boy and a pretty extraordinary young man. He loves Math, Science, and History and won Best In Show for his 5th grade science fair project for his school, and 3rd place in the county wide division. He loves to build and create things, plays the violin, collects rocks, loves bugs and reads anything having to do with outer space and history. Through my experiences, my hope is that others come to understand that anything worthwhile is never easy, but is worth it. Asperger’s is something Zachary has but is not who he is. I thank God everyday he’s mine!


1 Comment

  1. Wow. What an amazing experience and story. Thank you for sharing it. We really are our childs advocates with the school system! Our son had some big speech delays and they kept telling me he’d grow out of it. I finally said “no one can understand him, including me, can you?”! He finally got on an IEP at age 3 1/2, and got some help!

    You are amazing. I’m forwarding your story to a few friends of mine. 🙂

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