A few Day’s late, but in honor of Fathers Day I thought this was a great post to share about being the father of a special needs kid.
I think all parents feel these things but it is interesting hearing it from a dads perspective.
The impact having a child with a disability has upon one’s career. Fathers of kids with disabilities face a conundrum. Their presence at home may be even more important than it would be if their children were “typical,” given the impact that a child with a disability has upon everyone in the family. At the same time, the need to make enough money to pay for necessary treatments that are partially covered or not covered at all by health insurance is often present. They may have to work longer hours to pay for their child’s medical care. They may not be able to risk changing jobs if the new job provides less comprehensive insurance coverage. They may not be able to accept a promotion involving relocation when a move would result in the loss of access to needed educational and treatment services for their child.
The end result for a father of having a child with a disability may be unfulfilled career ambitions along with ongoing pressures to provide adequate financial support over and above what would otherwise be necessary to pay for costly treatments.
The challenge of providing for your family after your work life has ended. In our culture, the construct that we as men accept the responsibility of providing for our families is so much a part of our identity that when we’re unable to do so, the experience can be psychologically devastating. As the father of 15 and 12 year old girls who are “typical,” the challenge of figuring out how I’m going to pay for their education is pretty overwhelming. But I can assume that each of them will grow up to be independent and self-supporting. What if your child is going to require lifelong care and support? What plans do you have to make in the event you or your wife are incapacitated? How will your child be cared for when you’re gone?
Your relationship with your wife may be different than you envisioned. It’s easy for women to invest so much of their time and emotion and energy in caring for and advocating for the needs of their child with a disability that they may not have much left to share with their husbands by the end of the day. You may have very little opportunity to spend quality time with your wife, because of the lack of available child care or the lack of funds for a night out together…hence the need for free respite. You may not get to spend the romantic weekends together that your neighbors and coworkers enjoy. There’s a very good possibility that your sexual relationship with your spouse is going to suffer. There’s also a good possibility that you and your spouse will be more isolated socially that you would be if you didn’t have a child with a disability. Where we live, parents tend to associate with other parents who share a common interest through the activities their kids are engaged in…sports, school, church, scouts, other extracurricular activities. Fathers of kids with disabilities are more likely to lack the networks of supportive relationships that other men enjoy.
You may silently grieve ambitions for your child that be unfulfilled and experiences with your child that you won’t get to share. In my mind, this may be the greatest risk factor contributing to depression for fathers of kids with disabilities and the factor least likely to be recognized and discussed. All of us envision the relationships we hope to have with our kids and the shared experiences we hope to enjoy together. If you have a child with a condition such as autism in which their capacity for social interaction is by definition impacted, that’s a huge loss. Fathers of kids with disabilities may miss out on the experience of walking out on the field with their son or daughter on Senior Night for their sports team, teaching them how to drive, having their child treat them to a round of golf, or having the opportunity to play with their grandkids.
Several years ago, a very successful businessman sat in my office and sobbed when the reality set in that his son wouldn’t enjoy the types of friendships he had enjoyed growing up as a consequence of Asperger’s Disorder. The father was regularly paying for classmates to accompany their son on lavish ski vacations in Colorado or trips to beach resorts for diving and surfing lessons in the hopes that friendships would develop that never developed. Some parents live vicariously through their kids, but we all want our children to experience the things we treasure the most. When they can’t, that hurts.