The word “expectations” can be a double-edge sword for parents of a child (or children) with disabilities. The reason I know about expectations is that two of my three children have cerebral palsy.
Like other parents with 'multiples' I know a lot about creating expectations and letting them attempt to run my life. I know about letting expectations go. I know about finding new ones (then letting them go). At one time, I've even let them go and couldn't find them.
Recalling when I realized I was going to be a dad, my expectations were based in the future: idealistic, fantastical and how I'd be everything to my children that my parents were not. As I experienced the dream of parenthood go in another direction of fathering a child with disabilities, I had to found a way to let go future-oriented paradigms.
I thought of my life with this big, magic steering wheel, with the false idea I could totally control where it was turning. I'm not going drag down that winding road now, but know that letting go didn't happen until I was ready to be a father again, six years later.
After I accepted what kind of father I was – a pretty damned good one - I also began a long road of complacency when it came expecting a whole lot from my oldest daughter. I had let go so far that some of her at-home therapy regimens became too laborious for me.
I just couldn't find the energy it took to push my child and myself to do what was needed for her to “get her reps in” for supporting her work at school. I became O.K. with not having expectations while only supporting others with theirs.
Don't get me wrong, I never stopped being a great father and caregiver or loving her. I never quit taking her to do the things she enjoyed doing – walks in the woods, driving around aimlessly or just hanging out in her room.
I had become more of a traditional father as opposed to a 'special needs-all-therapy-all-the-time father.' It was important for me to put myself in that role first before I could move on.
This is the paradox of parenthood. It applies to all parents, but is magnified for parents like me. We make sacrifices for our children, but there's always a cost: ours or theirs. There are not a whole lot of choices in between.
It wasn't until a series (too many to list here) of 'unfortunate events' that happened to my third daughter that led to her cerebral palsy diagnosis that I would get a second chance to alter my fathering methods.
I have now learned that expectations have to be constantly massaged, reset and realigned in order to give my children their best chance at success. I can now feel when I'm going from one extreme to another, and I've found ways to settle on somewhere in between.
While now my outlook and energy has been refocused to provide more support to my children, they are the ones who teach me what to expect and what to believe in.' They show me what they can do, or cannot do, or when they need my help, and I'm O.K with that.
I once read on my very good friend's blog that “the biggest disability we have is low expectations” but in my experience the opposite also is true. Having too many expectations on myself or my children became a disability that I learned how to overcome.
Tim Gort is a writer, public speaker and advocate who shares his personal challenges and triumphs of being a father of three, two with cerebral palsy, at the family’s bog.