Parents of “Special Needs” Children: Sustaining Oneself for the Long Run
                (from Winnipeg Parents, October,2003)

                 By Joan-Dianne Smith, MSW, RSW

There is no shortage of advice on how parents can assist their special needs children. There are numerous books and articles, parenting courses, internet resources, clinics, developmental specialists, psychological input, various types of therapy, educational expertise, parent groups and organizations, to name a few. Most of these efforts focus on advice about understanding and handling the child, and on advocacy to help parents navigate complex systems to obtain services for the child. There is no question that these resources provide invaluable help that makes significant differences in the lives of the child and the parents.

Yet despite the wide range of help available, there may be subtle levels of the parental experience that are less well addressed. Parents, and perhaps mothers in particular, tend to invest vast amounts of time and energy in the pursuing the most suitable help, and in doing their very best to handle the daily challenges of raising the child. Some mothers/ parents feel that despite good help, people don’t fully understand their experience, what it’s really like on a day to day basis.

With an “invisible disability” for example, a parent may go to extraordinary lengths in planning and orchestrating the family’s participation at a community event. Often the event goes reasonably well and the family is able to present itself within the community norms. But, to the outsider it would not be obvious that this constitutes a tremendous achievement, requiring the balancing of multiple competing demands and tensions. While responding to the family’s needs, and implementing all the recommended strategies, mothers’/parents’ entire focus can be consumed, leaving little time for formerly enjoyed activities and pleasures. While on the metaphorical treadmill, doing their best, mothers/parents may also face the paradox of criticism for being over-involved with the child’s situation. How could they not be?

Often, while simply surviving day to day, the mother’s/parent’s needs, feelings, and internal dialogue are put “on hold”. Yet at some level many tender issues are brewing. Feelings of exhaustion and depletion are common, as is the tendency toward being self-critical. The flip side of this may be resentment, envy, and frustration aimed in any number of directions. Underlying all of this may be a deep sorrow, sometimes stimulated by comparisons with others’ situations, and activating the mourning for a more ideal family. Along with these feelings, there are also worries about the future, and anxieties about the family’s survival.

So, what can be done to assist in these more personal areas? Anything which broadens one’s perspective or helps to move out of the constant focus in the foreground can help. Time out, respite, and self-care can make a start in replenishing oneself. Being with someone who understands, finding spiritual soothing, and being close to nature have also been helpful to many parents. Talking to someone, and/or engaging in personal therapy have also been useful avenues toward internal acceptance and calming . Whatever approach is taken, it’s paramount that burnout is curtailed by finding ways to sustain parents and develop the resilience needed to continue to meet their ongoing challenges in parenting the Special Needs Child..