If your child is struggling with a disability or issue at school, you must be your child’s advocate. This candid account of a family’s struggle with ADHD in public school hopes to offer encouragement and insight to other families.
ADHD (Attention-Deficit Hyperactivity Disorder) is a very common disorder in children and adults. There are two subtypes of ADHD: Inattentive (formerly ADD) and Hyperactive. Research has shown, however, that no matter how the symptoms are manifested (inattention, hyperactivity, or both), the disorder is the same. Brain scans of children with ADHD show decreased activity in the part of the brain that controls focus and impulse control. Medications for ADHD are stimulants. The exact mechanism of current ADHD medication is unknown, but generally the medicine is thought to stimulate the part of the brain that helps the patient be in control of their thoughts or behavior.
Our Experience Living With ADHD
My oldest daughter is a bright child. She is an interested and motivated learner. She knew all her letters and was even able to begin to read before she turned four, so I really had no worries about her starting kindergarten. This girl was beyond ready. And she did well, but by the end of the year, her teacher approached me about her inability to focus on tasks. At her next check up, I brought up this concern to her pediatrician. We began the process which led to a diagnosis of ADHD-Inattentive.
Her doctor recommended medicine, but since my daughter was not having behavioral or academic problems, I didn’t think that medicating her was really necessary. She was still getting straight “A”s, so I was not concerned. By this time, she was a first grader and her teacher was aware of the diagnosis. The ball pretty much dropped there. I did not know that there were any more steps I needed to take to ensure she would have what she needed at school.
Another Year, Another Teacher
Her second grade year passed with no major problems until the very end of the year. The students took a standardized test which would determine if they would be considered “gifted” for the rest of their elementary years. My daughter did not finish the test in the allowed time. I ran into her teacher outside of school and she mentioned to me that my daughter did not finish the test. I asked if she was supposed to get extra time since she had ADHD. Her teacher said she did not know she had ADHD, which confused me because I thought the school knew. I knew, but no one ever told me what I needed to do with that information.
Third grade began with many changes from our previous years’ experiences. They would be changing classes between three different sections and have a different teacher for math, reading, and science. It did not take long into the school year before my daughter was missing recess nearly every day in order to complete work. She was not happy at school. The work was not difficult for her, but she could not focus enough to get it done in time. I really did not know what to do.
The 504 Plan
A friend of mine who is a guidance counselor told me that my daughter needed a 504 plan. I had never heard of this before. I felt really frustrated that neither any of her former teachers who knew about her diagnosis nor her pediatrician suggested that I take steps towards a 504 plan. The term “504 plan” refers to Section 504 of the Rehabilitation Act of 1973 (a federal law requiring school districts to offer a free and appropriate education to each child with a disability). A 504 plan details specific accommodations a child will have at school in order to help them learn, but differs from special education because the child’s disability does not have to affect the child’s academic performance. In other words, even my straight “A” student who was struggling to complete work is eligible.
I sent our principal a detailed email about what had been going on with my daughter: her diagnosis in 1st grade, her current situation of not completing work, and my desire to obtain a 504 plan. He scheduled a meeting with the third grade team right away. Every teacher immediately agreed that my daughter needed a 504 plan. I felt relieved, but at the same time a little frustrated that if they all could see she would benefit from it, why did no one else bring it up to me? The principal apologized that it had taken that long for her to get a 504 plan. I accepted his apology enthusiastically because at that meeting, I was so optimistic that our problems were over. I was so wrong.
The Snowball Effect
My daughter’s 504 plan allowed her to complete less work than her peers (so maybe instead of 30 math problems, she would do 20). She was given more optimal seating in the classroom, closer to the teacher, away from the open door. She got extended time for standardized testing and took tests alone in a quiet room (which she loved!) The one thing that I regret most about that 504 plan meeting is that I wish I had insisted that she not be denied recess time in order to complete work.
When I think back on what happened next, I almost can’t even write about it. As the school year dragged through the winter months, my daughter was in a constant state of stress. Her only friends were not in her section and she could only see them at recess. She was missing recess very frequently. She told me that when she had to stay inside to do work when everyone else went out to play, all she could think about was her friends outside. The poor girl could not focus at all on her work and “just work faster” so that she could go outside too. Despite her desire to do the right thing, she always felt like she was in trouble, even though her loss of recess and other “fun” things at school was in no way related to her behavior.
Symptoms of Stress
Soon she started having nightmares. One morning she woke up with a severely stiff neck. Even with a heating pad, Advil, and muscle rub, I nearly called the ambulance because she could not move at all for several hours and was in so much pain. She missed school. I called her pediatrician’s office and they suggested getting her in a hot bath. She screamed out in pain while I carried her downstairs to the bathroom. This exact situation happened again a couple of months later. She ended up missing a total of three days of school that year due to a stiff neck.
My sweet girl felt scared all the time.
Next, my sweet happy girl experienced waves of inexplicable anxiety and panic. One day we were eating at a restaurant and she just started crying uncontrollably that we needed to go home. (This was not a kid that cried frequently.) She just said we weren’t safe there. My sweet girl felt scared all the time. She wouldn’t stay with her grandparents, whom she is extremely close to. She would not leave my side outside of school. So I called her pediatrician again. Her doctor’s first thought was that someone was abusing her, but my daughter insisted that nothing had happened. I wanted the doctor to check her blood, thinking surely something was just completely out of whack.
Mental Health Services
Soon she began receiving mental health counseling through the school. She would lie down in the nurse’s office at school when she experienced an onset of the inexplicable and debilitating anxiety. This was such a scary time for her and for me as well. She began to fear the anxiety itself. Like she never knew when it would just hit her and that made her afraid to go anywhere or do anything. It was anxiety squared. I began to fear that she would never be okay again — that she would need mental health services her entire life.
The Last Day
My husband and I had many long conversations about what we needed to do for our daughter. It became evident that homeschooling was the road we were on. It wasn’t something we were quick to jump into, but it was quite clear that the standardized-test ridden, sit-in-your-seat-and-finish-your-work model of education was not working for her. The last day of school in 3rd grade never felt so much like freedom! For both of us. When I look back on it now, it is hard to swallow that she experienced so much pain that year. I can clearly picture the last day of school and me holding her hand and walking through the parking lot. She had just had her 9th birthday.
I really believe that what caused her anxiety was chronic stress. When we started homeschool in 4th grade, I was very mindful about stress management and other healthy habits. I bought a kitchen timer for her. We would use it so that she could work for a set period of time and then go outside and play. I was intentional about her getting enough exercise and sleep as well as eating a healthy diet. She may have had an episode or two of anxiety in the coming months, but as time marched on they got less severe and further between. She has been free for several years now.
Encouragement for Others
I really hesitate to share this story. Some may read this as being too critical of the school. There were just so many things that I didn’t know until after the fact: I didn’t know to push for a 504; I didn’t know that recess is an absolute necessity for ADHD kids to function; I didn’t know that chronic stress would lead to emotional and mental health problems.
Growing up in a family of teachers, I heard many conversations about parents who constantly complain to the school. Being one of “those” parents was a fear of mine. At the same time, my child was in desperate need of someone to speak up for her. I think there are a lot of things in parenting that are a delicate balance. But at the end of the day, I want to err on the same side that my child is standing on.
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