Tackling this topic, I am concerned with misrepresenting the following column as the ‘norm’ for SNP. There is no norm. Each family faces radically different diagnosis, resource availability, family and social support, marital and economic status, among countless other variables. But I hope by sharing our family’s story, it helps enlighten some and allow others to find solace. Last week, I physically removed my 7-year-old Bipolar/ADD/GAD/OCD/LHON-diagnosed daughter from my leg multiple times and left her screaming on a “group gathering quilt” for a Young Writer’s Camp at Thurber House Literary Center while alarmed counselors watched in horror as I urged my 9-year-old Asperger/ADHD/Bipolar/GAD-son forward and literally ran to our vehicle. I did not end up facing child abandonment charges, and she had a wonderful time the rest of the week. As a matter of fact, when I picked her up that same day, the head counselor described her as “bubbly” and said “she ran to get her writing journal”.
On Saturday, my husband and I took both children to their second Horse Therapy session where they were to actually ‘saddle-up’ on the same horse as Mom/Dad for the first time. I hadn’t hoisted myself onto a horse in at least 15 years and nervously held my medically underweight daughter with one arm and tried to pretend to be in charge of a huge, yet beautiful thoroughbred named Tucker with the other. I don’t recall the last time I saw my daughter laugh so much. Terrified the session would end quickly with her screaming to dismount, she instead urged the horse to go faster and wanted to jump obstacles!
One of my Asperger son’s obsessions is Lego Mindstorms Robotics. The Center of Science and Industry (COSI) has graciously greeted my son each morning this week for a camp of that theme despite the fact he’s fatigued from severe allergies, an ear infection and must eat a gluten-free snack every three hours regardless of their schedule.
On Monday, we received the EEG print-out from my daughter’s testing last month at Cleveland Clinic. Despite being on two anti-seizure medications during the EEG, the test showed suspicious activity and spikes. Cleveland Clinic advised us to install video cameras in our home to record her falling episodes before our return visit in a month.
In the past two and a half weeks, we’ve been to the pediatrician twice, urgent care, the emergency room, the Neuro Opthamologist, the psychologist and the psychiatrist. That doesn’t include the trips to the lab or the hours spent requesting medical documentation to provide to the school for IEP purposes. Yesterday at the Neuro Opthamologist’s office, I went armed with a print-out of a study found via networking on a LHON Facebook page. Once my doctor locates a lab that can run the sophisticated DNA test, we’ll be scheduled for more bloodwork and anxiety. However, she also gave us the great news that my daughter’s vision seems to be responding to the alternative treatment Idebenone. A different specialist told us four weeks ago that our daughter’s vision had declined.
We are up to our necks with medical bills. We struggle to juggle the most important bill each month and many are turned over to collections. But our children are our number one priority in our lives, and their well-being is our number one goal at any cost.
As a special needs parent, I am often up late at night reading research papers and browsing patient forums so that I can make educated medical decisions for my children. My husband and I moved to Columbus about 12 years ago simply due to job availability. I miss the rolling hills and the slower lifestyle. What I have found, with my Appalachian accent I cannot seem to shake, is that many “big city” doctors quickly ask us where we are originally from and assume a superior air when told southeastern Ohio. I can assure you that Syracuse Elementary, Kyger Creek High School and the University of Rio Grande more than adequately prepared me to read and analyze a medical research study. It’s been my personal experience that doctors often treat the parents of special needs children as hypochondriacs for what they consider too frequent medical visits. Yet medical studies have proven that children with mental health issues also have more physical health-related issues. I’ve humbled many a Ph.D. by quoting research facts and won many a hard battle for my children’s medical care. Don’t ever let any layperson or professional treat you as less than an equal in your child’s care.
As I stated, there is no ‘norm’. Not for us — not for any special needs family. We deal with high stress levels, medication choices, educational challenges, social and family acceptance and so many other issues. I dose meds and vitamins twice a day like a pharmacist. I make sure meds are refilled, we have sensory items for stress relief, medical appointments are scheduled, playdates are made for proper socialization … the list is endless. I have kept separate logs for different doctors of outbursts, migraines, loss of vision, seizures, violent behavior and food therapy. What we can never lose is hope. These children are our very future. They may have what we term “disabilities”, but nature often compensates by giving them great gifts that can contribute significantly to society if we just give them unconditional love as children and adolescents and give those gifts time to emerge. If we allow ourselves to become too bogged down in the day-to-day details to see the bigger picture — we’ve not only failed our children, but ourselves and all future generations, as well. As a race, we may well be defined by how we treat our most vulnerable and time-consuming members of society. Let us remember, it is often the meek and humble that lead others into a better future.
Please join me in upcoming columns as I explore many more issues facing special needs families. You can see additional photos and links that space here does not permit at my Facebook page “I did not sign up for this special needs parenting”. I welcome questions/comments/etc at snp.ididnotsignupforthis@gmail.com . And join me on Twitter @JHobbsSaunders.
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