Behold! Fatherhood. Manliness optimized. This is your golden moment as the dominating species and you have everything—a wonderful wife, a great job, a beautiful home, and now, children. You are right on track for a cup runneth over with fulfillment. Soon to come are baby’s first steps, the first day of kindergarten, sporting achievements, first dates, graduations, college, weddings, grandchildren, and more. You are The Man and you are providing for your family. Life could not get better.
Like the 1960’s Batman cartoon, a blow to the head has you reeling and you don’t know what hit you. You’ve just returned from an appointment with a developmental specialist and your baby girl has been diagnosed as severely intellectually disabled. Wait! What? This isn’t right. This isn’t how it’s supposed to be. Your baby girl is handicapped? Disabled? What? You’re dazed and confused. This isn’t manly. What should you do? This isn’t what fatherhood is all about.
Or is it?
News to you. This is what your fatherhood is all about. You have just boarded a roller coaster that makes few stops. Fathers of disability—take note. A difficult life awaits you, and your family needs you. This is Fathering Disability. Do not let them down.
I’ll tell you first-hand, when you come face to face with the incomprehensible world of permanent disability, the future wreaks of hopelessness. The initial heartbreak and disappointment are overwhelming. Dizzying uncertainty is seemingly insurmountable, and you may feel as though you just can’t do this. Fortunately, for you and your family, the truth is that you can do this, and you will do this. You must do this.
Does this sound like a high school pep rally? I hope not, because I’m talking serious stuff here. You, your family, and your child are about to scale a mountain of adversity. Gut-wrenching decisions and endless disappointment lurk. You will need to forget everything you thought you knew about fatherhood.
You must quickly get on board with Fathering Disability and its effect on you and your family. This is parenting and the fundamentals of care-providing at its core. This is truly supporting and providing for your family in some non-traditional ways. It’s family first all the way. You and your self-ness are no more.
To that end, you will need to embrace the three R’s of Fathering Disability.
- Redefine Your Manliness
- Reset Your Goals
- Renew Your Commitment
Redefine Your Manliness
Fatherhood may just be the pinnacle of perceived manliness. Fathering Disability need not diminish this, but rather take it to a new level. The sooner you redefine your manliness, the sooner you’ll get down to the business of supporting the family that needs you.
The list of non-manly things required for Fathering Disability will be man-boggling. Your list of testosterone-induced forays may need some editing. Time spent lamenting what you could be, or what society thinks you should be, is a colossal waste. Role models are rendered moot. Traditional schematics of gender-driven responsibilities within the family are shredder fodder.
What truly defines a man? True manliness has no specific criteria or definition but is more a measure of one’s ability to provide. Not only in the instinctual hunter, fisherman, bring-home-the-bacon sort of way, but more as a partnering provider of what is required to nurture and survive. When a male is truly providing for his family, and truly Fathering Disability, the stereotypes of manhood dissolve. What emerges is an anchor of love and commitment, without the weight of gender pressures and societal expectations.
No different than hunting game to feed your family, doing everything necessary to support and provide for your family should be instinctual. From the beginning of time, men have naturally provided for their families. The difference in Fathering Disability is that you will need to set aside your pre-conceived definition of provider and learn to do whatever comes before you. This life has no time for cookie-cutter manliness.
Reset Your Goals
Once you have embraced your new version of manliness, it will naturally follow that many of your life-long goals will need to be reset. It’s likely your new life is going to alter your intended path, and that’s alright.
Success in life can be measured in a variety of ways, and what better goal than to lead your family through a path of heartbreak and uncertainty.
Does this mean you should lower your expectations? Exactly. Your personal lofty aspirations may just not be in the cards. This is not about you anymore.
While you’re at it, give some serious thought to the idealistic goals you may have set for your child. In lieu of a picturesque romping childhood filled with playful and happy-go-lucky Chuck E. Cheese birthday parties, you may find yourself dredged in endless appointments with any number of specialists.
You’ll need to learn to put your dreams aside and call life what it is. You’ll need to look it straight in the eye and be unrelenting. You must. When you’re having real discussions about your child and real life, you must cut through the minutia.
This life is burdensome, with no time to mince words.
Renew Your Commitment
Do you see a pattern developing here? I hope so. By now you should understand that Fathering Disability means relinquishing. You’ve redefined your manliness and you’ve reset your goals.
As you grapple with the realization that you and your family are in for a different life, you will need to renew your level of commitment. As instinctual as this may seem, Fathering Disability requires a degree of dedication and commitment uncommon in a “normal” household. Your family needs you now more than ever and there is no time like the present to put your commitment in high gear.
My family and I learned to do without—without nights out, without vacations, without free time for our other child, and sometimes even without regular bathroom breaks. But most importantly, we learned to do what we must, and to commit. This is what a family does. This is what a Father does. This is commitment.
You will need to dig into this life in every way possible. Educate yourself on every aspect of your child’s life and condition. Learn about treatments, medications, and therapies. Find the best doctors in the field. Access services. Work with local educators and insist on the best programs. Early intervention is key.
And be prepared to fight. Your child’s only true advocate is you. You’ll likely encounter many kind-hearted, loving people along the way. But roadblocks abound, and you must be ready to spot them and conquer them.
Fathering Disability can be a dark road. The sooner you reboot and look it in the eye, the sooner you can begin to lead your family through the tunnel and out the other side.
You can do this. You must do this.
This is Fathering Disability.
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Photo courtesy of the author.
Mel Beck is a Writer, Musician, and Father of a severely intellectually disabled (SID) adult daughter.
In a world of seemingly endless and well-meaning causes, it can be difficult to choose those worthy of investment. Our friends, family and neighbors in the intellectually disabled community need our help, our voice, our advocacy, our friendship. From cradle to grave, these people struggle their entire lives. Please learn about Intellectual Disability. Educate yourself. Advocate for our most vulnerable friends and neighbors. We all need your help.