Parents raising a child, or even several children with disability are living almost every day with very little help or times of rest, and they’re not often admired or honoured, let alone acknowledged for what they are doing. Sadly, they are sometimes criticized for not having aborted their child or for not having him institutionalized, Regardless of any choice they make, they are going to be criticized, going to be trapped. Very often, the trap is of their own design, built out of frustration and a sense of failure. They rise to exceptional when they accept that theirs is a journey of self-discovery and an awareness of what life really means. In discovering and getting to know their inner self that steps up and bucks up for battle, they allow those around them to pause and take stock of their own lives and what they are ‘doing’ with them.
Those who make the choice to care for children in institutional or group home settings are lauded for their efforts, held up as ‘saints’, being wonderful and generous; they have ready access to help and encouragement from professionals and clergy on a consistent basis; they have days off – they have salaries! They are viewed as selfless, having ‘a calling’; a ‘gift’.
Is the same not true of the biological parents of such children, who live with them and care for them, day after day, year after year, decade after decade, while also trying to parent their non-disabled child or children, in a home with mother, father, sometimes a grandparent or two as they grow old. Are they not equally generous and wonderful? In addition to the challenges of parenting, these men and women also must carry the financial burden, sometimes for their entire lives, and make no mistake it IS expensive to raise a child with disability. Where is the praise for them? Where is the extra help for them? Where are their days off? Where is their salary for going well above and beyond, with little or no regard for what toll all that effort is taking on their physical body, let alone their emotional and spiritual bodies?
People who have chosen to share their time and talents in communities such as L’Arche, founded in 1964 by the world-renowned lay theologian and philosopher, Jean Vanier, learn more about themselves in a year or two than they ever thought they would, and perhaps more than they’ll learn in a full, lengthy life of many years. Often they undergo a period of training or have backgrounds in psychology, social work, nursing, or any other such field that supports work in the health/wellness/disability arenas. They are trained, in effect, to become parents of the parentless.
It’s not unusual for some university students after that first summer internship in a group home setting to appreciate that they have a ‘calling’ to live and work amongst those with disabilities, whether a disability to the physical body or to the intellect or both. What is beautiful is that quite a few students make it their life’s work to improve the quality of life for those who will never possess the tools to do it on their own. They are then able to see what parents who care for children at home are up against and it gives them an appreciation for caring for a child with disability can bring to, yet at the same time take away from the family dynamic.
For those who become parents of disabled children, there is no handbook; no courses to be taken, no degree that is presented upon the delivery of the child because there’s no real graduation. These parents are thrown head first into the deep end of the pool, to become the preservers of that life that is about to go under; that life is their child, forever a part of them, for however long they are graced with the presence of their newest teacher. For every exceptional parent, the new student, there is an exceptional teacher, the child. In a typical classroom, there is a consistency, a routine that flows day after day with new skills to learn added and a group with a singular purpose learning in unison.
The learning of the parent and that of the child with disability often changes from one moment to the next, and is sometimes beset with crisis. The first lessons are learned often while mother and child are still in hospital. A spiked temperature, a feeding tube dislodged, a rash that won’t resolve, fitful sleep patterns or no sleep for either child or mother. Imagine years of that scenario playing out, with stressors changing at random. How do parents do it? I, for one, am at a loss to even begin to imagine how life must be for families raising a child or children with any sort of disabling condition. Though I was a child with disability and now an adult living with disability, I had no clue what my parents went through but that is not to say I don’t know what those like me are going through. I have to say my own parents were exceptional, raising me along with 7 other siblings at a time when mothers stayed at home while fathers worked to earn the daily bread, or our in case, several slices per day.
Exceptional parenting is about learning all the medical procedures that may be required on a daily basis to manage care of the child with disability, particularly a condition like cerebral palsy. It takes a fortitude of spirit to withstand the strain of the panic-fueled races to the hospital in the middle of the night, traveling in the back of an ambulance as EMT’s work on a child who has coded. That trip plays over and over again, for a year, 5 years, 10 years, 20 years. Yet, there they are — the parents. Ever present! Ever vigilant! Staying the course!
Exceptional parenting is being willing to get pushy and even loud on behalf of the child who cannot push or who has no voice. Infant and child care programs have, over the years, become more inclusive, so that children who are differently able may be monitored and cared for in a safe environment, even if only in a limited way. Their inclusion in some measure gives Mom and even Dad, if he’s fully hands-on, a break from the rigours of daily care. Respite is absolutely critical for parental and family survival and it’s equally critical is that the community at large fully understand this need and make themselves more available on a consistent basis. It really does take a village to raise a child, and in many cases, it seems to take a village and a half to raise a child with special needs. Emotionally raising up the parents so that they can press on must be ongoing so that they will never feel that they are alone, stuck in ‘it’ by themselves.
Being an exceptional parent also involves being an exceptional friend. If you have a spare hour or two that you can give a parent or parents of child with disability, with an offer to sit with their child while they refresh and reinvigorate themselves, then you have given them a huge gift. Multiply that gift by networking with several friends offering your time and energies to those who are maxed out and exceptional parenting becomes a community affair.
I feel a song coming on — ‘We are Family!’
Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca
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