Asperger’s Syndrome: Finding the Center of the Storm, Part 1

By Blog Contributor, Catherine Dooley

Part 1 of 2

“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.”  ~Ether, The Book of Mormon

As a young mother to an 18 month old son and a brand new baby I felt truly blessed. My first son Quinten was advanced in just about every way possible, coming into this world taking it by the horns. My second child, Zachary, came along and took his time, developing at slower pace. As an infant, he rarely cried. From the time he could reach up and grab things he had an affinity for ears. Something about the gentle touch of his little fingers on my earlobe was soothing to me. I felt like I was being spoiled after having Quinten, who was very active. Zachary was such a content child;  all he needed were some toys and he would play for hours. Zachary had a rather exceptional ability with Lego’s and building things. On many occasions, he would bring me his creations as if he was seeking praise or approval from me. In one instance before he could even speak, he came to me and held up his design, while imitating a roar. When I looked at his masterpiece and realized that it appeared to be a Brontosaurus, I asked him if it was a dinosaur. He smiled from ear to ear, confirming my assertion. As amazing as it was, the more his abilities grew, the more the peculiarities increased. There was no way for me to realize the amplitude of struggles that he and I would soon face.

“Abstract Polaroid”, courtesy Kevin Dean

At age 3 ½, he was pointing at things and using short choppy words, a variety of hand gestures and grunts to communicate. He preferred to play alongside his brother rather than with him. He didn’t have any desire to dress himself, was clumsy to say the least and had no interest in what other people were doing. Zachary never looked anyone in the eyes and rarely shared his toys. One of the more formidable behaviors that we noticed with Zachary was that he flapped his hands when he was excited, in full motion, as if trying to fly. It became more apparent to me that perhaps my son was not “ordinary”. Yet, even with these indicators, Doctor’s still seemed to overlook his odd mannerisms. “We tend to worry as parents more than we need to,” was one doctor’s justification.

At 5 years old his unusual behaviors began to stand out even more. Socializing became one of his chief struggles. Normally a child is joining games and playing cooperatively with others. However, with Zachary, I often found him playing alone or parallel playing. When he “parallel” played, he would sit next to the group and play similar games, but never as an active participant of the group. He wouldn’t make eye contact, engage in discussions, or interplay with other children. Still, his doctors contended that there was no reason to be alarmed, explaining that he was probably just shy.

“Red Storm Rising”, courtesy Nico Nelson

On Zachary’s first day of Kindergarten, my husband and I got the children ready for school. While climbing in, Zachary banged his knuckles on the side of the door. The next thing I heard was, “mommy my fingers hurt.” Thinking nothing of it, I urged him to sit down and get buckled up so he and Quinten wouldn’t be late for school. My husband, who was driving, said to Zachary, “Just shake it off buddy. You’ll be okay!” After a moment, my husband began to chuckle. I noticed him looking in the mirror, and when I looked back, I couldn’t help but laugh, myself as I saw him shaking his whole body. Zachary was literally, “shaking” it off! His year seemed to be off to a great start. We never heard anything of concern from Zachary’s teacher or his school until it was time for parent/teacher conferences. Sitting in front of the teacher, we looked on excitedly when we noticed an immediate indifference in the teacher’s body language. “I want you to know how sweet Zachary is,” she said. I had a feeling there was more to it. The teacher continued, “Zachary tries very hard to follow instructions, but … he seems to have some problems adjusting to school.” I asked her what she meant, and she told me that Zachary was chewing and breaking his crayons and pencils in class and banging them on his desk; he plays with his paper and constantly needs refocusing. She added that he is in and out of his seat all day long and isn’t playing with other children. As we continued to speak she assured us that the school would be working with him to help ease his transition.

For the remainder of kindergarten and into 1st grade, Zachary had screaming fits, ran away from school, hid under desks, and experienced absolute meltdowns. Meanwhile, he was in a constant downhill slide with academics. It became extremely overwhelming for all involved. Soon, I was accused of overindulging, not providing appropriate discipline and neglecting him. I knew I was trying my hardest, but I didn’t have the answers either. At home Zachary was calm, quiet and rarely acted out. He cuddled with me while I read to him and played happily with his toys. I couldn’t comprehend what was causing him to act like two totally different children, depending on whether he was at home or at school.

Zachary and Quinten moved to their father’s home and Zachary struggled to adjust to the change. Through 2nd grade, his father attended numerous parent/teacher conferences in which his behavioral issues were a main concern. Six weeks into school, I got a call notifying me that Zachary’s emotional flare-ups were becoming a profound concern for the school. They were suspicious of possible neglect and suggested that they may contact CPS (Child Protective Services) if the situation didn’t quickly improve. Of course, I was a bit freaked because I was not there and couldn’t directly ensure that things would change.

Thereafter, Zachary’s father and I took a far more proactive approach in advocating for him. Doctors diagnosed him with ADD (Attention Deficit Disorder) and prescribed associated medications. There were marked improvements in his behavior as his eruptions became more trigger-based rather than at random. For example, when reading time came, he would begin to act out because he was unable to read and was afraid to perform. His teacher told us about a program called Stars, which was designed to help children with similar academic limitations. Though we pleaded for them to put him in it, the school denied our supplication, citing that he was “too intelligent” according to an IQ test they administered to him. There is a difference between rated IQ level and academic ability. After a long uphill battle, the school finally admitted him into the Stars program, where he worked in smaller groups and began showing signs of improvement. The delay of getting him into the program proved costly in itself. Zachary’s self-esteem began to plummet. Other children bullied him because he was “weird,” “different,” and “retarded” according to them. His differences made him a permanent target for bullying. His older brother Quinten took on a protective roll. He kept the bullies from focusing on Zachary, even if it meant that he became the spotlight of their cruelty instead. Quinten became his best friend and sometimes his only friend.

Because of their father’s ill-health, the children again had to move and change schools. This would be the point we would truly begin to embark on a never-ending rollercoaster for Zachary’s educational assistance. During 3rd grade, his educational records, indicating he was involved in a special program, were lost in the transfer. The new school had nothing to reference concerning his learning needs or his involvement in the Stars program; thus, they placed him in a standard education class, where he struggled. At home, we concentrated our efforts helping Zachary maintain his grades and petitioning the school for help. He worked three to five hours a night on his homework, which is considerably longer than normal. Even with all of our help, his teacher called us concerning a missing writing assignment. When asked about it, Zachary told us that he couldn’t write the story because he didn’t have a title. Even though he had the whole story planned out in his mind, it was an impossible task for him to write it, simply because his teacher had instructed him to start with the title. Normal children would have just written the story and thought of a title afterwards, but he couldn’t because he took the instructions literally.

Zachary possessed very little understanding of establishing friendships, playing cooperatively or learning to be competitive. We often got calls concerning his involvement in fights because he struggled to communicate his type of play to peers. His imagination was far more intricate than his ability to clarify how game playing worked. He’d get frustrated that the other children would not follow the rules, namely the unspoken ones in his mind, which were made to “never change.” Other children would change the rules, or take over ones he was already engaged in. As a result, he promptly decided the best play for him was to separate himself from the others. That lesson didn’t come without obvious consequences, including increased meltdowns and fights.

I understood that ADD was perhaps not the only thing wrong with him. I could hardly stand to see him struggle like this. I needed answers, so I knelt and prayed for guidance.

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4 Comments

  1. I can’t imagine how hard. You are such a strong person.

    -Elisa
    ecwrites.com

  2. Wow, I can’t even begin to imagine the struggles you have faced. How you must have prayed for your son. I will keep you and your son in my thoughts and prayers!

  3. Thank you all for reading my son’s story. I have learned to lean on God for the support needed to over come all of the challenges that we have and are facing. One of the biggest lessons I learned came to me while reading the scriptures. I had been pondering and praying over some of the hardships we were going through. I was feeling so overwhelmed when these scriptures jumped out at me. Romans 5:3-5 which reads
    “3.. we glory in tribulations also: knowing that tribulations worketh patience;
    4 And patience, experience; and experience, hope:
    5 And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us.”
    I now try daily to glory in all the difficult times because through all of them my faith is reaffirmed in a Heavenly Father who knows me, and knows what I need for my growth.

  4. I’ve taught students with ADD, but I still can’t imagine how tough a job it is to be their parent – it takes a very special person to do that well, and it sounds like you are just that! All the best for yours (and Zachary’s and Quentin’s journey together).
    Thanks for sharing,
    Kristina

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