If moms are the heart of the family than special needs mothers have to be the enlarged heart! We take on the extra burden of raising children who require more. The colossal task of rearing special needs children is daunting, isolating, overwhelming and yet, ultimately rewarding. Without us even realizing it, the experience changes us profoundly. We don’t Sweat the Small Stuff, we just try and survive it and in time learn to celebrate and embrace it.
My son’s diagnosis of Autism occurred when he was three years of age. With the diagnosis went a life of dreams that I had for my only boy. I began a time of depression and grief as I ventured into this different world of Special Education. It was nothing I knew as my two daughters had attended regular schools. I fought the “little yellow bus” with all my being, as it symbolized anything but normalcy. That moment arrived on our first day of school when that bus pulled up to the curb and my son, donning his cutest little Gap outfit, had to get on. He took that big step up, faced the bus driver and asked “will you bring me back to this house with this Mom?” and I beamed as I knew in that instant that I was “special” too.
A year prior when symptoms were just beginning, I remember justifying the different things I saw my son do. I couldn’t face the possibility that something might be wrong. Is he just tuning me out because he is preoccupied?…. Is he relentlessly taping that hanger on the floor because he is going to be a drummer one day? Eventually he was tested and that fateful diagnosis came and my hope for a regular life with a regular boy began to slip away.
What I grieve most is the dream of raising a son who would play team sports, get a drivers license, possibly go to college, get married and eventually allow me grandchildren. I don’t know to what extent these events will happen as the story is not yet over, but the reality is many of our children never get these opportunities and mom’s lament over these losses.
Surviving the small stuff is the order of the day. We have easily given up the notion of perfection and just pray we don’t drown in another day of challenges. There were too many shopping trips where I would reach to grab some vegetables only to find my son in an instant eating out of the bulk bins. Will the school call with a calamity? “Your son was standing to close to some girls at recess and now the parents want to talk to you”? Do our neighbors want to levy another complaint? Will the cat live through another flight from the second floor? It is all Small stuff yet any one of these things can cause you severe angst and can bring the strongest of us to our knees.
Consequently we are a unique breed thrust into a world we never anticipated. We raggedly run to jobs, schools, scheduled meetings, therapy appointments and grocery shopping. We do our best to provide all we can for our children having nothing left to find regeneration for ourselves. It can become an isolated existence. The very thing we need most is an emotional connection with other mothers with special needs kids, yet it is the last thing we make time for. However when we step into those rare moments when hearts and minds meet, a true and immediate bond occurs and that place in our ailing heart begins to heal.
Along our journey we learn to fight like warriors as we try to get our children into certain programming; or we demand that adequate services be rendered. When the establishments deny our rightful requests, we rant. So deep is our longing to recover our children and allow them opportunities to thrive, that it colors almost everything else in our lives. Our other children and husbands’ can be quite affected by our struggles to find suitable services for our disabled loved ones. The divorce rate is high and psychologist visits for all of us are inevitable. But at the end of the day when we count our blessings, we see that something remains extraordinary in the family that has grown up with a special needs individual.