The Challenge of Being a Dad Raising a Child With a Disability

Yesterday evening, I lay on the bed next to my son for a while. James’ autism affects him significantly, he is mostly nonverbal, although he does have a few words including, “no,” “more,” “please” and rather embarrassingly, “beer” (a long story for another post). As we lay next to each other, James vocalized sounds and I repeated them. He loves this, touching my lips or teeth with his finger as I repeat his repertoire of sounds.

Time slipped by as we engaged in this simple activity together, with James clearly delighting in the son/dad time we were able to spend together. His beaming face, his raucous belly laugh, his enthusiastic demands for, “more!” (thankfully, not “beer”), love shining from his eyes, all mirrored in me, too. I wouldn’t have missed it for the world!

I meet lots of dads of children with disabilities in the work I do; dads who are all at different points on the journey with their child. Some are bewildered by what is happening to their world, trying to make sense of it all and looking for answers. Some are in denial, trying to ignore the reality that their child is different to what they expected. Some respond by putting all their energy into trying to “fix” their child, looking for solutions in the same way they might try to repair a car. Others simply love their child for who they are, accepting that things are different, but celebrating the differences and loving them through it all.

One thing that often unites these dads, however, happens when a group of them come together. When this happens, I’ve seen men sharing their stories in ways they have never been able to before, especially with their partner. Once these guys start releasing what’s been stored up in them for so long, while they have often been trying to “keep it all together” or be “the strong one,” all their emotions and feelings come flowing out. Sharing with other guys who understand how they feel, who are on the same journey, releases something powerful within them, sometimes allowing guys to grieve for the first time the loss of the future they expected for their child. The tears flow, there are hugs of comfort and understanding, it’s wonderful to see — and often quite a surprise to their partners when they are reunited afterwards!

Of course, this comes too late for some dads, dads who have already gone, who for a million reasons couldn’t be a part of the family any longer. My heart breaks for what they have lost. I cannot judge them, as I don’t know their stories, but my heart goes out to them and to the families that are left behind.

But what these dads have taught me is that bottling things up, trying to keep it all together, not talking or sharing about it, doesn’t help any of us. Releasing all of that and then just living in the moment where I’m laid next to James, delighting in being with him, sharing in a simple activity, showing love to each other, that’s what being a dad to a child with a disability is all about — and that’s what my son and my family need most from me.