“I work on stifling the tears. Sitting in the dark, the only place that feels warm, comforting, understanding. I feel the swell, the familiar stiffness of my body as I try to control what is to come about. No one can see me. No one can hear. I think about what is brining me here. Not a place I’d ever thought I’d be. Not a place I want to stay. A place of loneliness, desolation, despair and depression….”
Personally, I’ve felt this as a teenager, a young adult, a married woman, as a parent. By far….By far, feeling this as a parent of a child with special needs finds new depths unmatched by any experience prior, by all experiences combined. Not even the hormone filled, ‘crazies’ of a teenage girl could touch this. It comes for different reasons, for uncontrollable circumstances that you’d give your life to change. It comes because those surrounding you fain understanding where there is none, only to be revealed in time.
Various online writings such as those you’d find on Special Happens seek to demolish the waves of despair by attempting to enlighten those who are willing, bring a fuller understanding to those seeking, give a description to those wondering and comfort to those experiencing. These writings seek to explain why our families adhere to such strict routines, why gatherings are generally off limits, why the perimeters of children’s play-dates come with strong requests for certain times, certain places…why our families may prefer the comfort of our own homes.
To enlist the realization that breaks from the life of being a special needs parent are few. There are nutritional needs to be met, life-threatening allergies to consider, meltdowns to manage, routines to follow, medications to deliver. There aren’t many, if any, in our pool of resources that can watch our children so we can shower much less grab some bonding time with our spouse, or a girl’s night out. Money can be tight, or not exist at all. And many times, having the support of said spouse is lacking, or (s)he is not in the picture at all.
For blogs like Special Happens, the best we can do is to ask all those who are willing to listen, to respect our answers, our decisions, our requests. They aren’t made lightly but with the full pressure of satisfying your needs, our children’s needs, the requirements that are demanded and our own split between being a person and being a parent of a child with special needs.
Trust in us. Respect us. Believe that we are otherwise fun, capable, willing people who are bound by the loves of our lives, and though we’d have it no other way, we need connection and to be wrapped in the warmth of understanding from another too.
By Karen Taylor-Good and Lisa Aschmann
Their YouTube Link is here: The Life That’s Chosen Me
This was written by me, for me…and a friend…and all the other parents and caregivers of children and adults with intellectual and physical challenges. Please share.