Updated: Apr 8, 2020
I wrote this post nearly two years ago. It is hard to read, but a part of the truth I choose to speak. It's also a gentle reminder of how far we've come as a family, but how far we have to go as a society understanding and educating these children with Tourette Syndrome.
I certainly don't have all of my crap together, but my platform has grown and I'm heading down the path to fulfilling the purpose I feel I have been called to pursue.
Without further adieu, here's where it all started.
I keep asking myself, "How the fu@$ did I get here?"
Seems harsh, but true. It is an incredibly loaded question weaved into one large web of chance and circumstance.
I feel as if I have been out at sea too long to remember where I departed from and after years of trying to find my way back, I have reluctantly abandoned the dream of returning home. Instead, a desert island has come into view and with it a new life has emerged. While it is hard to relinquish the familiarity and comfort of life on the mainland, it is time to start navigating the rocky terrain of my newfound home.
The island is foreign and desolate, but it is is filled with such beauty and wonder it leaves me in awe. It is unfamiliar and leaves me feeling lost and helpless much of the time, yet I have reluctantly come to accept it as home. As with all new beginnings, there are underlying feelings of uncertainty and trepidation, but in those uncertain moments, if I am quiet enough, peacefulness washes over me.
This is my life.
In a strange twist of fate, I have landed here, in a foreign place, where I would have never imagined myself living.
When I take time to reflect on the path I've taken through life, I can now see why certain choices and opportunities were placed before me. A love of children lead me to major in early childhood education. The early childhood program at St. Ambrose, my alma mater, included special education, so throughout my four years of college I was trained in both. Pursuing a degree in special education was never on my radar. Had it not been part of the program, I would never have pursued it.
Upon graduating, my ultimate goal was always to be a kindergarten teacher, but when I ventured down to Texas to interview just a few weeks before school started I found myself presented with an opportunity to teach PPCD (Preschool Program for Children with Disabilities). I was so grateful to be given an offer I took it without hesitation. It certainly wasn't what I had planned, but I dove right in and never looked back.
I was fortunate to receive a lot of training while working for that district, so I gained a great deal of confidence and ended up loving my job. Many of my students had autism and very challenging behaviors. Each child was a unique puzzle, but over time I was able to put many of the pieces together and help them overcome some of their challenges and find success in the classroom. It was exhausting but rewarding work and I spent five years teaching in self-contained special education classrooms.
While I left the classroom behind nine years ago when I began staying home with the kids, I have found myself back where I started. It looks a little different this time around: the classroom is our home and the child is mine. This time I am unfamiliar with the disability and the challenges it presents. I am back to being that first year teacher who poured her heart and soul into researching and strategizing how to reach and help my kids.
I will be the first to admit, I didn't see this coming. Because of my background, I was hypersensitive to the development of my children. When I was pregnant I breathed a sigh of relief every time the ultrasound results showed our children had no risk factors. When they were born and given clean bills of health I breathed another sigh of relief. I watched them carefully through their toddler years and breathed yet another sigh of relief when they met their developmental milestones and showed no signs of autism.
I naively thought we were in the clear, so to speak. Our son had challenging behaviors, but like most parents we chalked them up to the terrible two's and three's and him being an active little boy. When he began to clear his throat all of the time, we chalked it up to allergies. When he began to uncontrollably grimace and cock his head to the side we figured it was a phase that would pass. Until it didn't. When more noises and uncontrollable movements began we took note. We went to the doctor, we were told to observe, and if we hit the year mark where these didn't subside, we would talk. Well, they didn't subside. In fact, they became worse. We went to Iowa City where he was officially diagnosed with Tourette Syndrome.
With that diagnosis everything fell into place. Tourette Syndrome is far more complex than tics. The sleep problems, challenging behavior, aggression, rage, explosiveness, ADHD, defiance, obsessions, compulsions, impulsivity, anxiety, worry...it is all related and part of this disorder.
A long, turbulent, four year journey has lead us to the island. This foreign, desolate, yet beautiful island.
We are beginning to learn the lay of the land. There are landmines and volcanoes everywhere just waiting to erupt. There are raging, violent storms and days that never seem to end. It is simply indescribable and there is no map available to help navigate the treacherous terrain. It is survival mode, living minute to minute.
It is lonely, isolating, overwhelming, and frustrating. It is simply indescribable.
A new journey has begun. One where very few understand what we are up against and how challenging it is day in and day out. Where there are few local resources to help support us and him. Where it is rare in schools which leads to very little understanding about the disorder and the comorbid conditions that accompany it. Where very few local doctors specialize in this disorder. Where there is so very little help.
Right now this island feels deserted, but that doesn't mean we will always be alone. In time, we will find the help and resources we need to adapt and manage this to the best of our ability. We will put ourselves out there and try to connect with others who are also on this journey. Our community will grow, of this I am sure.
This may very well be the most difficult test I have endured. To this point, the road has been filled with twists and turns. One never knows what lies ahead, but the view in the rearview mirror is clear. Each stop along the way had a purpose and it's time to trust the knowledge and experiences I took away from each one have prepared me for this journey.
We have been put on this island for a reason. It may not be by choice, but there is no lifeboat to escape on.
Time to get to work. Time to start settling in. Time to lead the way.