Happy Day After Fathers Day to all the ‘special’ fathers out there; father’s who are Dad to children with ‘special needs’.
Lots of Dads are all about being fully engaged in their child’s life but it must be bittersweet for fathers who are Dads to children whose lives are charged with struggles, day after day.
Dad didn’t get the baby who would grow up to play tennis with him, or play touch football or baseball, or any of those activities that embrace physicality. Some are Dads to children whose intellect is not fully intact, so there’ll be no chess games, no board games, no computer games that require any degree of proficiency.
Lots of Dads will never experience their child rolling over, crawling, sitting up, self-feeding; none of those milestones. But there is one thing that makes it all worth it — that big smile for Dad! And the laugh! As language skills develop, and for lots of kids there will be language, there’s the lively chatter with Dad about all kinds of things. Though they may not ‘play’ sports, lots of non-ambulatory children love to watch sports. Nothing is off limits. A Dad is a Dad is a Dad; and so it goes. Go with the flow. Go with what works. Life is good.
Often Mom who is out there, front and center, with the doctors appointments, the meetings with teachers and aides at school; networking with local play groups to find a spot for her little one, where he can learn and grow.
When possible, encouraging paternal involvement is critical to the family dynamic, as children need both models in their lives. Dads are involved, but not always so ‘out there’. We have some single fathers who’ve come away from broken relationships and act as primary caregiver, fathers who’ve adopted children with disability without ever having been married or in a committed relationship. Some of the guys are in long-term, stable relationships with another who participates with co-parenting. All hands on board. All hands welcome, and all hands very necessary. They celebrate Father’s Day EVERY day. Every day is a gift. For the medically fragile child, tomorrow is not a given.
Some fathers may distance themselves by working long hours which unfortunately keeps them out of the loop with regard to medical appointments and the like, where information which would help them better understand their child’s medical status is disseminated. They must be encouraged to participate in that realm, even if only minimally.
Lack of empathy from medical professionals sometimes makes it difficult for parents, mothers and fathers, to come to terms with the future and possibly overlook the potential that may lie within that little person who has just come into their lives. Unwittingly doctors are imposing their own belief system into a situation where it has no place. Their job is to address the health/medical needs and leave the love and ‘day to day’ of the child to those who are the most important – the parents and the family. Just as they have opportunities to encourage mothers of medically challenged children to embrace Mother’s Day, with a few kind/caring words, they similarly have an opportunity to encourage fathers to embrace their ‘special’ day. Not only would an encouraging word, or six, from a doctor or others involved in the child’s life be welcome — it’s necessary.
What becomes of the relationship of the father, the Dad who will never have that ‘traditional’/typical relationship with child, especially a boy child? What can he do to ensure that he gets to know this little person who may never be able to articulate or demonstrate a knowing of his father in any tangible/visible way? What must never be ignored is that a father getting to ‘know’ his child with disability will ALWAYS be meaningful. A father who sits quietly in a dimly lit room with soft music playing, rocking his son who cannot see, cannot hear, cannot move, is meaningful, has value, and creates memories. He’s enjoying a special ‘Father’s Day’. Non-disabled siblings witnessing this father-son exchange are learning a valuable life lesson as well – empathy. As families plan for various occasions that call for celebration, inclusion of he who is unique, he who is differently able IS possible.
Fathers of ‘special needs’ children must accept and allow themselves to be ‘special’ too. Special every day, in the knowledge that they chose to be ‘in it’ for the long haul, no matter what each day brings.
As well as a few things for Dad, I encourage families to have children’s toys on hand to celebrate Father’s Day; after all the day is about the kids, too. What a fun way to take the sting out of the ‘never will be’ father-child moments — bopping each other on the head with plush toys that squeal or blowing bubbles at each other. Get the camera ready for the close-up.
Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca
