My first baby died. That’s what it was to me. Even though I saw it pass from my body as a bundle of cells…mere tissue, 25 years later you cannot tell me that my baby didn’t die. That is not meant as endorsement of the loss of abortion rights but rather shared to speak to the emotional attachment, dreams and ambitions related to the choice of child rearing that begin long before delivery, before conception. We imagine birthdays, Christmas’ and vacations, the sound of their voices and the feel of their skin against our own. We contemplate names and the “priestly power” we will confer upon them. We strategize what a room will look like and yes, in long view what college or schools they may attend.
What we never quite envision is, what happens when our bundle is “broken”.
According to the Centers for Disease Control and Prevention, one in six, or about 17% of children aged 3-17 have one or more developmental disabilities. 1 in 54 of them being autistic. And while we’ve become increasingly aware and fearful of having such a birth, we’re still caught off guard when the needle lands on us. There is something very frightening about having a child that lies outside of the boundaries of what we accept as “normal”. The fright is reinforced by whispers, stares and constant comparisons of the developmental benchmarks your young one is achieving or…not. The voice in your head is one of guilt, what did I do wrong? How did this happen? Why me? And as you watch your seed of hope age and grow there is unintended isolation as a result of the lack of education, understanding, acceptance and patience.
As a parent of a child who is differently abled, we must allow ourselves and our children to live outside the “noise of normal” of the broader community. We must be the first to reimagine how we’ve written the script of the parenting journey in our heads, let our mental babies die and see the living soul before us, embracing them for who and what they are and be willing to grow with them from there. If we dare to be honest, that’s really what all parents should seek to achieve, less imposition of their own will, their own way. We must be brave enough to help our babies navigate their life path not from the place of others, but by setting personal goals based on their skills and abilities, working to achieve them and then setting more. The steps may be smaller, the pathway may look different but STAY on it!
There is joy and beauty. Wake up each day and allow yourself to take it as it comes, knowing that your child is entitled to the same rights and privileges as any other. There is no reason to be ashamed or hide. You are not a bad parent.
I well recall the day of sitting in my own daughter’s assessment meeting. In 25 or so pages of reports the “team”, had managed to convey everything that was wrong. What was missing from their report was the many things that were “right” with her. No one seemed to see the sadness in my eyes or understand their words were challenging to hear, even crushing. I remember getting in my car and crying all the way to work. How was I going to fix this? Who was going to help me? Her? Somewhere in my still places and quiet times the strength came and renewed, and answers and resources followed because I looked for them and opened myself to walk in my reality. I came to receive assessments as a tool that should be used to make decisions and not a report of doom, denial of potential or the “last say”.
I embraced the dimension of parenting that is not always the fun stuff we’ve dreamed about, but does instinctively lie within us, the commitment to advocate. I developed a “healthy deafness”, freed myself from the parental standards and expectations of others, created “our normal” and gave my daughter the gift of the freedom to be different and different isn’t bad.
