This is the latest guest post in the This Is How I Do It series, which features bloggers who have kids with special needs and their go-to tips for parent sanity.
Blogger: Scott Price of Glad to be Your Dad
His kids: Anna, 15, legally blind since 4th grade due to an optic nerve glioma; Jay, 11, who has congenital bilateral sensorineural hearing loss and hears with a cochlear implant.
My three biggest secrets to sanity are…
• Faith that God, the Father, loves my children more than I can and despite what I feel about their disabilities, he knows what he’s doing.
• Periods of creativity, whether focusing on our family business (Sandlapper Soaps), writing for Glad To Be Your Dad or teaching and coaching.
• Piling up in the den with the whole family, watching a movie and eating popcorn—moments when all seems right with the world.
I keep track of my child’s therapy and medical appointments by…
My wife and I use Google Calendar to schedule appointments and activity pickups and drop-offs.
One way I relax (actually really, really relax) is…
Being near big water. I’m too active and pale-skinned to be a beach bum but plant me on a South Carolina tidal marsh with a crab net, a fishing pole, or a pad of paper and pen, and I can stay all day. Also, this will sound goofy but if I can spend a few days at a Disney property, I can relax. I really enjoy the execution of excellence and nobody does excellent customer service like Disney.
When I get bummed out about something related to my child, one thing that gives me a lift is…
Those moments when I can stop being the Character-Molder-in-Chief and just hug my babies. When Anna was diagnosed in with her tumor in the 4th grade, I noticed that I was one of the few fathers that showed up at the cancer clinic. I also noticed that I was one of the fewer still that would go into the back and hang with the kids, my Peeps during their treatments.
My company allowed me to alter my work schedule so I could accompany my daughter to the hospital each Thursday, Anna’s chemotherapy day. Thursday was brain tumor day at the clinic and through Anna’s 18 months of weekly treatment, I got to know a lot of kids and a lot of moms, but not too many dads.
I decided that I would be a dad-figure to any kid there that needed a dad hug. I stopped off each Thursday at a local candy shop and bought bulk candy for the kids in the clinic to wash the taste of the drugs out of their mouths. I became the losing-est checker player in the history of the Palmetto Heath Children’s Hospital, a title I hope to carry to my grave.
I lost too many of my Peeps to cancer and I recognize how very precious a gift I have been given in my own two children. So, in those times I can just love on them, I’m lifted.
If it weren’t for [fill in the blank], I am not sure I would be able to get through the day
You may have noticed that during this tale, I’ve spent much of my writing on Anna’s story, but it was Jay that set us on the path to advocacy.
He was born bilaterally deaf. We learned this the day after he was born. I wheeled him down the hallway from Robin’s recovery room to the newborn hearing testing room. At the time, I worked for a medical device manufacturer and designed cardiac monitoring devices. I got caught up in the science of testing a newborn’s hearing and barely processed the technician’s news that my son failed the test.
We came back to the hospital two weeks later and Jay failed the second screening. He was scheduled a couple of weeks later for a more thorough testing and like the first test, I became enthralled with the science of measuring the hearing ability of a newborn baby. Halfway through the third round of testing, I realized the audiologist was telling me that my son was deaf.
We got digital hearing aids on him at 9 months of age and he kept them until he was two and a half. His hearing continued to deteriorate until he became a candidate for a cochlear implant. I had real misgivings for a time about the technology, which was still new and untested in children. I feared him being shunned by the deaf community but, decided that he could make his own lifestyle choice at the age of majority and while he was in our care, I’d do what it took to give him as much of a mainstreamed life as possible.
Anna was our family champion. Robin and I took and picked up Jay from as many as eight hearing and speech therapy sessions a week during the height of his treatment. Anna read to him, got in his face, talked to him, and would not believe that Jay could not hear every word that she spoke. Every day. All the time.
Jay is now mainstreamed in school and is an A student, in large part due to Anna’s innocent intervention.
In April of 2008, Jay was named the South Carolina Speech, Language and Hearing Association’s Ambassador. Robin and I developed a presentation advocating for early intervention and cochlear implantation of children. We lobbied South Carolina’s General Assembly, we met the governor, and it is the month Anna was diagnosed with her brain tumor.
May not only became Better Hearing and Speech Month, it also became National Brain Tumor Awareness Month, and our story with Anna began.
Sometimes, I don’t know how I get through the day. Sometimes I want to wrestle with God, asking how he could allow this to happen to any child, much less either of my own. Dang, it’s hard. I just have to believe that his knowledge is greater than mine and though this is not the route I would have chosen, it’s the bus I’m on. And I’m going to make the best of it; where I am.
Maybe that seems fatalistic, maybe that seems I’m powerless, but believe me, if I could have flipped a switch for either of my kids, I’d have done so a long time ago.
The way my wife and I split up responsibilities for caring for our children is…
Like in most cases with special kids, the mom, Robin, my wife, is the primary nurturer and caregiver. We have been fortunate that our employers have been very flexible with our work schedules and that Robin has been able to work part-time. Now, it’s mostly splitting time transferring the kids between activities and appointments, IEPs and MRIs. As a friend once said to Robin, “You have a different normal than the rest of us.” So true. Anna is at the age where she qualifies for help from the SC Commission for the Blind, so we’re about to learn about a new new normal. Hopefully she will learn, we will learn the advocacy Jay had been taught.
The way I deal if strangers stare at my kid or say things is…
Education. I’m a teacher at heart. Jay plays travel baseball and wears a “baseball” haircut year-round, his behind-the-ear processor and loop are great conversation pieces. He wears a cochlear implant processor and a loop attached magnetically to his scalp; each device is very obvious unless he’s wearing his batting helmet. Most adults ask if it is the same device Rush Limbaugh uses to hear. I guess Rush is the most prominent celebrity who uses a cochlear implant, though my personal favorite is Heather Whitestone McCallum, Miss America 1995. We met her at a function and yes, forgive me, I’m just a man.
There was that one convenience store clerk who asked what cell phone company we used. I guess she liked Jay’s “Bluetooth headset." LOL.
Anna stubbornly refuses to admit she’s legally blind. She’ll tell her friends and teachers that she has vision problems but, she refuses to be classified as blind. It is with great difficulty that we can get her to use her white cane or sometimes, her magnification tools at school. As a fifteen-year-old high school freshman, she won’t willingly touch any assistive devices unless we force her to do so in crowded situations like Walt Disney World, a big city like New York or a crowd like a wedding reception. I don’t blame her; at fifteen, I couldn’t ask a girl out on a date without breaking into the hives. I can’t imagine being a fifteen-year-old girl, holding onto a white cane while waiting on Mr. Football to call.
One great therapy technique I recently learned for my kids is…
A-D-V-O-C-A-C-Y in all forms: self, parental and teacher.
One great site I’ve found lots of good ideas on is…
After searching the Interwebs about everything it said about bilateral sensorineural hearing loss, cochlear implant technology, optic nerve glioma and Pilocytic Astrocytomas, I decided to stop researching any term that had more than three syllables. Now, I look to inspirational sites and created one of my own.
I rock because…
I’m old enough to be my kids’ grandfather. So, I guess I rock because I’m the original Paleo? LOL. Really, I rock because I refuse to let my children be defined by their disabilities—or be limited by being their dad. I can, at the start and close of each day, tell my children, "I'm glad to be your dad."