Daddy and Me: When Being a Daddy Means Your Child has a Disability

Okay, let’s clear up one thing right now. I’m not a dad, obviously, nor will I ever be one. But I have a great one, it is Father’s Day, and I want to write about dads (even though the calendar on this program may actually register the post as coming up on Monday). So, first: Happy Father’s Day to my very first (and so far only) Prince Charming, who taught me, among other things:

1. The finer points of the Civil War, the Titanic, and World War II (he’s a major history buff)

2. How to convert fractions to decimals (though I still need a calculator for that; sorry, Dad)

3. All other restaurants bow before the superiority of Cracker Barrel (which is tough to admit when you’re a lover of all foods Italian, and Cracker Barrel hasn’t seen a spaghetti noodle in, I’d venture, maybe 20 years)?

4. Act like a lady. When necessary, fight better than a man.

5. There is never an inappropriate time to quote A Christmas Story.

6. God is trustworthy, loving, and can provide all you need. And, since we’re a Christian household: no other god stands up to Jesus Christ.

7. A seasoned dad can hear the cookie jar lid from ANYWHERE in the house (we had, and still have, a very loud ceramic model)

8. A real man holds open a lady’s door and does anything else that makes her feel respected and loved

9. A dad will make sacrifices for his kids. These include, but are not limited to: listening to kiddie tapes on 6-8-hour drives, shuttling his grown daughter back and forth to grad school as she groans over HIS music (or more likely, talk radio, all five buttons), staying home with sick kids, taking his kids to the creek so they can splash him, going to the bookstore when he’d rather be at Sportsman’s Warehouse–you get the picture.

10. Good dads hang in there with their kids. Good dads don’t leave.

 

Now, why did I say #10? Yes, it’s because unfortunately, in today’s world, many dads get up and leave when they realize they’re going to have children and thus, have to make any or all of the sacrifices mentioned in #9 and even more (you know, the ones that involve bills, doctor’s appointments, orthodontic treatment, poo and pee, maybe even walking with his kids through drug rehab, a teen pregnancy, an attempt at suicide, or something else). And yes, that is, I believe, even more likely if the dad is told, “Your child has a disability.” Kathie Snow sums it up well: even the best-intentioned dads feel fear when fatherhood comes, and that fear is compounded in a huge way when a disability enters the equation. Suddenly, she writes, those dads wonder how to interact with their kids. And though she doesn’t write this, sometimes that means the dad gets so scared, he leaves. I shudder to think what would’ve happened if my dad had walked out after he heard the CP diagnosis when I was two.

But I didn’t write this post to beat up on dads, even and especially those who’ve left their kids, even if those kids have disabilities. Father’s Day, even in Christian circles, has become way too much of a “slam dad” day. My father once said he was sick of going to church on Father’s Day because of the (unintentional, but very pointed and present) emphasis on deadbeats, abusive dads, and in general, the kind of dad he shouldn’t be–because he never was one of those to begin with. I actually wrote this post to do three things. One, to honor my dad. Two, to applaud the millions of fathers who make all the sacrifices I’ve mentioned, and more, every single minute of every single day. (And if you’re not a Christian dad, that still counts–Jewish, Muslim, Buddhist, whatever, if you adore your family, you need that honor). But three, to talk to the dads of kids, even big kids or young adults, with disabilities, for just a minute.

Yes, dads, you can probably guess, if you’ve got kids with disabilities, they need the same things from you that other kids would. They want to play sports, go fishing, go shopping, have you play “airplane” with them, whatever. And if you have to modify those things, so what? However you can give your kids what they need, do so for them. However, there are other things kids with disabilities need that might seem more difficult to give them, so I’ll talk about them for a minute or two.

1. Your kid with a disability needs to know he or she is normal, and that you believe in him or her. So many people in your kid’s life–doctors, therapists, teachers–will spend their time telling him or her all the reasons they “can’t” or “won’t.” You, Dad–Mom, too, but I think, especially Dad–need to come above that. Your message needs to be, “I believe in you,” and, “As long as it doesn’t hurt you or others, you can do anything you want to do with your life.” My dad knew I wanted to be a writer. Did he say, “How are you gonna do that; you can’t use a pencil?” No. He built a desk when Mom brought home a computer. Dad knew I wanted to travel–to go to summer camp with other young kids, and on mission trips, and even to Europe with college classmates. Did he freak out about my “special needs?” Well, he was concerned, yes, but he knew modifications could and should be made–and he and my mom helped make that happen. So, if your kid wants to play in Little League, be in a play, go to college, have a job that Vocational Rehab didn’t set up ahead of time? You can be the one to help make that happen, so be willing to find out how.

2. Your kid with a disability needs to know he or she can have a real life. Since I was nine years old, I’ve talked about having my own house and a husband. We moved to a new house when I was little, and thus, made interminable trips to Lowe’s. One of my ways of occupying the time was to pick out things I liked–wallpaper, paint samples, doorknobs, for crying in the sink–and say, “When I have my own house, I want this.” Now, that’s been hard on my family and me, because at 27, I still have no house and no husband, and it breaks my heart. For a long time, I believed they didn’t want me to have those things and were going to try to prevent me from having them. I know better now, but I also know that if I went through that, other PWDs might have, too. This goes back to a lot of what we’ve discussed on this blog before–accentuating strengths, listening to your kid’s strengths, and not leaving it up to the “experts,” the therapies and the rehabs and the job coaches, to decide what kind of life your kid needs or is “realistic.” And can I just say this: even if you believe with all your heart and soul that your kid can have the life he or she wants, you have GOT to say it! Say it a lot. Because the older that child gets, the more he or she will wonder.

3. For dads with daughters: Your daughter with a disability needs to know she is cherished, and beautiful–a strong woman, and a Beauty worth rescuing. No, I’m not saying your daughters need to be Disney princesses (although if they want to play that, please play, too. They’ll adore you for it). I’m also not saying Daddy can rescue his daughter from a disability–sadly, that doesn’t usually happen. I’m borrowing from Stasi Eldridge, the author of Captivating. In that book, she talks about what makes a woman’s heart beat–what she needs to know deep in her soul from a young age. And one of those things is, “Am I pretty?” Not just physically beautiful, but strong. Captivating. Worth cherishing and fighting for. Stasi describes herself, wearing a “twirling skirt” (girls, you know what I’m talking about), and twirling in front of her dad, asking without words if she was pretty.

Every daughter needs to know she’s a Beauty, but I’d venture to say that daughters with disabilities need to know that even more, and sometimes multiple times a day. In our world, disability is ugly–physically, mentally, and emotionally ugly. If you have a disability, you are, in one, two, or all three of those ways, unattractive. You are weak, and you captivate no one. At least, that’s what society at large says. That, unfortunately, adds up to a lot of distressed damsels who end up crying, lashing out, hurting themselves, or hurting others. They need someone–and yes, often that first someone needs to be a man–to tell them they are captivating. And often, that first man is Daddy. She needs to hear it, dads–a LOT. She needs you to be her prince. I know I called my dad Prince Charming when I was little, out of a belief I was Cinderella. And whenever I wore any kind of dress, he asked me to twirl.

4. For dads with sons: Your son with a disability needs to know he can fight the battle and live the adventure. I’m borrowing from John Eldridge, Stasi’s husband and the author of Wild at Heart, which is basically Captivating, for men. John explains that just as women need to know they’re captivating, men need to know there’s an adventure out there, tailor-made just for them. That, although picking fights is unacceptable, they will face battles in their lives, and they are equipped to fight. But just as disability can make women feel ugly and weak, so too, it can emasculate men and boys. Too often, males with disabilities are treated like disappointments and as if they have no manhood. They’re not supposed to go off on adventures; they’re supposed to stay home like good little boys and let everybody fight their battles for them. Well, let me tell you something: I believe that, even if you are a male with an IQ of 30 and severe incontinence, tics, or drooling, you are a MAN. You can claim manhood just like everybody else, and there is an adventure out there for you–it may just be different from Macho Man’s over there. And who is the first person a little boy needs to hear that from? Of course: DAD. Loud and clear.

Okay–that’s plenty to think about. Happy Father’s Day, again. 🙂

 

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