Between February being disability awareness month and March 21 being World Down Syndrome awareness day we get lots of people ask us about parenting a child with special needs. A journalist asked my husband for his perspective and this was his response:
Nine years ago, Caila came into our lives. Jodi (my wife) and I had decided not to do invasive prenatal screening and so it was only on her fourth day of life that we learnt that Caila has Down syndrome. It was a defining life moment for Jodi and I – we understood within minutes of hearing the news that how we responded would determine so much of our lives and Caily’s life.
As parents of special needs children, we are all too familiar with the horror stories of how special needs children doom their parents to a life of pain and misery ending in an inevitable divorce. There are indeed strong data to suggest that couples of special needs children have a higher incidence of divorce. One study in the Journal of Family Psychology in August 2010 found a 70% relative risk increase in divorce in parents of children with autism spectrum disorder.
It’s easy to understand why this increase divorce rate exists – all kinds of extra stress accompany having a special needs child – financial and time pressures, increase stress on siblings, advocating and fighting for services and acceptance.
Moreover, it seems to me, that in a family of a child with special needs there is often an exaggeration of the traditional male / female roles in the family with the mother taking on the bulk of the burden of the additional responsibilities of the child with special needs often largely to the exclusion of the father’s involvement. I believe that this fragmentation could well lead to additional tension and ultimately resentment between the parents.
Jodi and I have always had an egalitarian relationship. We are both career minded and so decided when we started our family to share the role of raising our children and continuing with our respective careers. When Caila came along, this presented a new level of logistical complexity but we nevertheless persevered. We went to the numerous assessment sessions together whenever possible; we shared in the countless trips to various therapies. We take turns doing her homework with her and the never ending hours of helping her inch towards her milestones.
If anything, I think we not only have found a way to sidestep the marriage – destroying risks of having a child with special needs but have actually created a stronger bond between us because we have a common purpose and a shared responsibility for our child.
So, to my fellow special dads, I say get involved as much as you possibly can. It’s good for you, your wife and all the kids of the family.
Originally published: March 22, 2017