What They Won’t Tell You about Being a Special Needs Parent

A little bit of everything. A whole lot of something.

Imagine yourself sitting in front of a doctor, being told the percentage of negative risk to your child’s future medical health (children if you have multiples). Terminology floats around your head as you try to put it into perspective. Diagnosis, disability, death, you’re told about these with varying degrees of sensitivity to your feelings.

You might come to a decision at the time, or you may wait until consulting any number of family and friends. In some cases, the decision is made for you, and that can provide an unspoken relief alongside the grief.

Most likely, at that moment, the doctors won’t tell you that not only do you risk the unknown life of your child, but also the existing relationships within which you find yourself. It is unrealistic to expect anyone to know exactly how they will be as a parent before a child is born. Parents of premature children cannot imagine what they will be like as parents, particularly when they don’t know *how* different their child will be (or not). Divorce among the parents of premature babies and children with disabilities or “special needs” is not uncommon.

More difficult than understanding how such parents will relate to each other during their child’s troubled future, is being able to interpret how your child’s special needs will change your interactions with your friends and family. The range of the reactions by friends and family to special needs children is a diverse as the people who have special needs. No doctor I ever spoke to told me that my friends could refute my choice, regardless of how hard I’ve worked with my child’s disability. I imagine, for most other special needs parents, the same is true.

Having your friends reject your child, based on his or her disability, can be soul destroying. It’s not always obvious, either. Maybe the person who is not comfortable with your child’s particular needs will voice their concerns directly to you. It is equally likely that they will not. You may be so busy with your child’s care needs that you might not realize the growing divide between you and your friends. Perhaps you’ll find you are getting fewer invitations to group events. Friends who get together regularly when your situation limits your ability to go on outings may not realize you are feeling increasingly distant to their social networking. Or, you may feel the need to constantly justify your child’s behaviour and feel increasingly defensive doing so.

I hope that this doesn’t happen to you. Parents whose children have a challenged life need to surround themselves with friends and family “who get it”. I’m sure that parents who choose to raise a child with a disability or special need will pick their child over the uncomfortable companionship of a friend who neither tries to understand nor help. I think that special needs parents feel a decrease in their stress when they are among family and friends who either understand special needs, or have a child with disabilities of their own. I know parents of preemies whose friends have chastised them for being too “worried” about their child’s health and development after the NICU. That does not bode well for ongoing reciprocal relationships.

Bruce, Torran and I are very grateful to the people who have supported us, even if it has been a bit awkward at times. Thankfully, we’ve not experienced a complete rejection of our child or our parenting. In fact, we’ve been almost militant to integrate him into new environments like his school, making other parents hang out with us regularly that they and their children can become adjusted to Torran and his “things”. We stood up for our choices, or defended his “abnormality” (more specifically its effect on us) from time to time, yes. New friends in the preemie and special needs communities continue to become a welcome part of our regular milieu. They become a different kind of family.

Recently, I met a woman who expressed her gratitude that she’d met other parents of special needs kids. “I’m no longer alone”, she said.

When I told Bruce why I was writing this post, inspired by a Facebook comment on one of the advocacy groups I follow, his response was, “those people weren’t friends worth having”. I hope the woman who posted her frustration at her loss of friendships doesn’t feel too disparaged at the seeming gap in her life. If she does, I know there are more people who would stand at her side now than the number who left her, regardless of her child’s situation. They will do what is required of a friend: to listen to her, empathize with her and let her feel that at least some part of her life is just like someone else’s – and completely worth living.