When I brought my son Connor home from his month long hospital stay as a newborn with numerous life altering diagnoses I felt lost. I didn’t know which way was up or down so to even begin thinking of how to navigate the service delivery system for individuals with disabilities frightened me like nothing else.
As parents and caregivers to children with disabilities we have the daunting job of learning our way through this new life as if it’s trial by fire. We quickly learn what overstimulates our child, what material is sensory overload, which doctor NOT to go to, which therapy center is the best fit, and we learn that we are indeed the expert on our child.
We rely on specialists to give us their insight on best practices, medications, procedures, and so on. We rely on therapists to give us their recommendations on physical therapy, occupational therapy, speech therapy, vision therapy, applied behavior analysis, and so on. We rely on pediatricians to give us their attention while helping to keep our child well and healthy. We rely on school teachers to give us their time and energy ensuring our child is seen as a valuable asset to their classroom and worthy of learning the curriculum they are teaching. These professionals assist us every day and we are grateful for them, but who is there to give their honest input on navigating the winding road of services available to children and adults with developmental disabilities?
While consoling my screaming 5 month old Connor in the waiting room at physical therapy one day another mom glanced at me and smiled. I noticed how she looked so put together. I noticed how her child, who seemed to be around 12 years old, was contently playing on the floor with blocks. I noticed how her demeanor was so calm and cool and collected. I instantly wondered how she was able to pull all of this off. I tried to smile back, but the knot in my throat was getting tighter and my tears were inching closer to falling. Noticing my emotions she walked over to me, grabbed my hand, and gave me some much needed encouragement. Those five minutes forever changed me.
You see we as parents of children or adults with disabilities are the ones who are there to help each other with the complexities of our lives when professionals cannot. We are the ones other parents turn to when no one else can guide them, give answers, or provide clarity. Generations of parents before us paved the way, they planted the trees from which we enjoy its shade, they pushed forward and taught the parents that came behind them how to avoid the potholes, the road closures, the detours, and assured those fragile, new parents that there is a (somewhat) smooth ride ahead once you get through all those obstacles in the beginning.
Through our own experiences we have become experts on numerous different aspects of developmental disabilities that no amount of professional school can teach. Having this unique power allows us to be able to share with other parents going through similar life situations and we should share our knowledge often.
As I look back over my son’s past 10 years I can say with absolute certainty that I received the best support, information, and guidance from other parents walking the same path. We are each other’s best allies.
If you are a parent of a child with a disability in the early stages of your new life journey I hope you feel comfortable reaching out to other parents because we’ve walked a mile in your shoes. If you are the parent of a child with a disability whose has been traveling this journey for a while now I you are reaching out to the parents who are in the trenches, lost and confused with nowhere to turn, and offering them your guidance and support. No one can understand the daily struggles and constant confusion we face like other parents of individuals with disabilities. It’s like having your own cheer squad or support network all day, every day. We are all in this together.
“Alone we can do so little; together we can do so much.” –Helen Keller