24 and Counting


My son shared his story in the last post. I would like to share parts of this same story from a parent’s perspective. Raising a child with mental illness is not an experience I anticipated I would be adding to my resume. And just like Emily Perl Kingsley’s essay, Welcome to Holland, I found myself perplexed as to how I had planned for Italy and landed in Holland instead. Holland is not Italy and yet, when you look around, you find beautiful tulips and intriguing windmills. Reflecting back, it’s as if we started out in Italy and made our way to Holland learning, growing in acceptance, and appreciating a world we had not expected. I admit that it has been challenging at times.

Twenty-four years ago, we had a beautiful fun-loving son. He was our first and only child. His laughter was contagious and his love of learning was like a sponge. Our move across the country to Idaho left us starting from scratch finding a support system and longing for family and friends. While we were adapting to our new environment and our new home, our little family sought out new connections and support. As Ryan grew, he began reading on his own at the age of two and writing by the age of three. He loved music and playing with other children. Everything seemed “normal”, although he was a bit quirky. He would twirl his hair with his finger, move his fingers in mid-air to written words that he saw on the TV screen or on signs, and he would move his hands to music as if conducting it. What made the latter behavior even more unusual was that the music, at times, was playing in his head… a place that was comforting and sometimes more stimulating than what was going on around him. Because Ryan would blurt out answers in kindergarten without raising his hand, and he seemed to already know what others were learning, we were asked to have him tested for the gifted program. Test results revealed that he was eligible for the gifted program and accommodations were made for him to attend a second grade Language Arts class for part of the day and attend kindergarten the other half. During this same year, the school psychiatrist saw Ryan and diagnosed him with Dysthymia. What?! How can a young boy be depressed! This was difficult to to understand and it sent me researching for how to help him.

The following year, Ryan was accelerated to second grade. On the surface, this was good news; yet, underneath, I needed to know what this meant. I read everything I could about gifted children and what we needed to do for him. I learned about the social and emotional needs of gifted children and how their brains are actually wired differently from the rest of us. I began to feel the stares from other parents, the whispers as I walked by, and a couple of parents asking me why my child had skipped a grade. This was difficult to explain, and I felt judged.

As Ryan stated in his story, his elementary years are mostly a blur. His teacher started to notice peculiar behaviors. For example, he would fall out of his chair and not know how it happened, sit in his chair upside down (later reporting that he needed the stimulation he received from this to stay focused), and step on the teachers feet not realizing it. I had assumed that the educators at his school would know what to do to help him, both academically and with his behaviors. While I was researching how to help my son, the school asked again for him to be tested. This time, they gave Ryan a diagnosis of Non-Verbal Learning Disability (NVLD). Once again, I was left to my own research in order to understand this new diagnosis. NVLD did not seem to fit for me and we had him tested by an outside psychologist. After weeks of testing, Ryan was diagnosed with Tourette’s, OCD and ADHD. We were devastated. How can this be? What does it mean? How can we help him? Who can help? There were so many questions and no place to go for answers. Again, I was compelled to learn everything I could in order to help my son and my research became all-consuming. The schools did not understand him or his needs. Because he is gifted with mental health conditions, Ryan was not challenged enough in school and school itself was a struggle. There was very little new learning in the early years. Ryan was picked on by his peers and he encountered struggles with a principal who saw Ryan as a battle to be won. We changed schools, changed districts, then returned to our home district. There were, indeed, some exceptional teachers, principals and assistant principals along the way. They showed empathy, looked at his strengths, looked for ways to be creative and were flexible. To them, I am ever grateful.

Doctors and mental health professionals could only do so much for him. We learned that the mental health field is not an exact science; it requires a keen ear and skilled professionals, which we were fortunate to encounter a few times, but it took a lot of trial and error to find the right match. Medications were helpful to a point, and side-effects are sometimes worse than the symptoms we were trying to target. It was also difficult, at times, to tell if they were even helping. What made all attempts at help even more challenging is that mental illness masks gifts, and vice-versa. He wasn’t eligible for various programs that may have proven beneficial because he would represent as “normal” or average. We had catastrophic health insurance and paid for every service out of pocket until I started to receive health insurance through my employer a few years ago. As parents, we found a support group for parents of children with Tourette’s. The group was extremely helpful and we found the Tourette Syndrome Association based in NYC. As helpful as these groups were, every day was a challenge and I felt for my son. I cried for my son, for our family and for my marriage. I also got involved as a support group facilitator, worked with the school district at a high-level providing presentations and information, worked with individual families to help them with IEP and 504 meetings, and got involved with NAMI and the the State Department of Education assisting with the writing of a Twice-Exceptional Manual.

When many parents and children were playing sports, going to parties and hanging out with friends and neighbors, we were visiting counselors, occupational therapists, psychiatrists, doctors and psychologists. We also built a life based on his strengths and interests: piano lessons, skiing, hiking, camping, Scouting and taking road trips. we became a close-knit family. In all honesty and hindsight, I would have preferred to stay in the east where there were more services available for our son and my support network of family members. We are very proud of him and his accomplishments (e.g. that he has earned his bachelor’s degree). We continue to have hope, and still worry about the future. I hold much admiration for my son, and I still feel guilt that we couldn’t have done more or done things differently. I have realized that life is full of dichotomies; I can hold opposing feelings at the same time about one thing. Although our journey passed over the Sistine Chapel and the Colosseum, we have come to appreciate the tulips and the windmills of our lives as we continue to advocate for the needs of children and their families.

sarah

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Thank you Stephanie for sharing your experience with the TCOM community. Your willingness to share your story helps others know that they are not alone. There is a large community of people here to support everyone through their own journeys.

 To reach out to Stephanie, use the comment box below. For questions on additional supports and services, use our contact page to get connected.

 

 

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