Tuesday, September 10, 2013

11 things a special needs dad wants you to know


This guest post is from Gary Dietz, dad to 14-year-old Alex who he describes as a "warm, funny and challenging boy who happens to have a rare genetic disorder, a 13q deletion." As a result, Alex has developmental, cognitive, physical and behavioral challenges. An entrepreneur and educational technology marketing professional based in New Hampshire, Gary is working on a book and web project called Dads of Disability: Stories For, By, and About Fathers of Children That Experience Disability (and the Women Who Love Them). He's funding it at Indiegogo through October 5, and has raised $4500 to date; he aims to raise additional funds to find more essayists. Meanwhile, these are the top things Gary really, really wishes more people knew about special needs dads like him:

1. Dads like to be invited, too
On more than one occasion I’ve learned that my child didn’t get invited to a social gathering—not because of his disability, but because a female caregiver wasn’t available to go with him. Yet his Dad was available! Please don’t assume a child can’t attend a birthday party or playground get-together because a woman isn’t available to accompany the child. If the dad is single, invite him even if he is the only dad coming in a group of moms. An involved dad of a child with special needs is used to being one of the few men in attendance. Who knows, he may change a diaper or two for Team Mom at the playdate if you play your cards right!

2. It bugs us when you casually moralize
The assumption that having a child with a severe disability is an acceptable reason to engage in a deeply personal conversation with a stranger completely flummoxes me. I don't mind when people ask about Alex—I am all for growing understanding about his condition and spreading awareness—but do not tell me that a vaccine caused my son’s disability (his genetic condition occurred at conception!) or that God chose me for this challenge or that I am a saint be my son’s father. Especially if I don't know you. If I saw a stranger at a bar having a three-martini lunch is that an invitation for me to talk about alcoholism? Exactly.

3. Sometimes men cry
I may well up once in a while for reasons that may not seem all that clear or reasonable. Yes, I'm macho and manly. But I’m also human. If I take a call at work from my child’s caregiver and she lets me know that my son just got on his therapy horse for the first time after struggling for four months just to make it from the barn door to the horse, the corners of my eyes may glisten. Or if I learn that my son climbed onto the slide at the playground for the first time and I seem in shock and in tears, don’t be surprised. Or if I watch your typically developing child win the spelling bee or hit a home run and I tear up, I may be mourning something for my family. (No worries, I know how to celebrate for you—see #6.) Catharsis is good for the soul. Just because I show emotion doesn’t mean that I shouldn’t be considered for a promotion, that I can’t be a part of boys' night out or that I am somehow a lesser man.

4. Yes, men go to their kids' doctor appointments
If you are a boss, an HR professional or even a coworker, please assume that a child’s doctor and school responsibilities—especially the sometimes more complex ones of children with disabilities—are split between multiple caregivers. That may not be the case, of course, but it's wrong to simply assume the opposite. Be open to the fact that the Dad may even be the one that handles a majority of these appointments. I’ll get my work done, don’t worry. And I know you worry because of the following.

5. Dad's career can be unfairly impacted, just like Mom's
It's so wrong when people assume that the spectacular care and growth of my child was fostered exclusively by his mom while I was off having martinis with Don Draper. Men have to make choices too, and my career has been impacted in many ways—mostly unfair ways—by me prioritizing my son’s needs. At one job, a manager ordered me to let my son’s mom take him to a serious hospital exam. “Only one parent is needed, and the child has a mother” was the boss’s comment. I told him I was going, and if I didn’t have a job when I returned, well, that was his choice. (I kept my job.) Another time, in a job interview with someone I knew from a previous position, the knowledge that my son has special needs came up as a “negative” on my weekly availability—before the interviewer even asked me what hours I was available to work. Please don't assume that I can’t manage work as well as the next person because of my child’s needs. Instead, marvel at the skills a hyper-organized father of a child with special needs has! We can be great managers, having learned the politics and patience of school meetings; we have sharp communication skills (you should hear us talking with the insurance companies); and we are masters of budgets, advocacy and diplomacy.

6. We are interested in your children, too
Don’t assume I don’t want to hear about your child’s achievements because you think you may make me upset or jealous. I’m interested. Just do one thing for me: Show as much authentic excitement about my son’s achievements as I show you about your child’s achievements. We are both equally as proud of our children.

7. Don’t think I'm divorced because of my son’s disability
The statistics establishing causality between having a child with a disability and a higher divorce rate are shaky at best and incorrect at worst. My son’s issues may or may not have exacerbated existing issues between me and my ex. But our divorce has very little direct relationship to my son’s challenges. Besides, would you ask any other family if their child “caused” their divorce?

8. Let's not pretend intense realities are easy on me
My son is in a residential placement that he entered at age 12 a little over a year ago. (He is home on the weekends.) This is a huge change, loss and adjustment for him. But also for me, his father. Well-meaning people make me feel poorly when they suggest I think of it as he went to college "early." Many parents of a tween can’t handle sending their typically developing kids to sleepaway camp for a week without major stress. Why would I then be expected to “pretend” that this long-term residential experience is like college, and feel better? And to top it off, now you have me thinking about the fact that he may not end up having a college experience at all. It’s like you are asking me to pretend his disabilities aren’t real and the impact of my child moving away at age 12 be cared for by strangers is somehow typical. The best support you can offer is empathy—an ear or a hug—and just say you can’t imagine how that must feel. And let me talk (or not) about it as the situation requires.

9. We hate being mistaken for babysitters 
It’s not just the Asian-American mom in a New York City park who gets annoyed at being mistaken for the nanny when she is, in fact, the parent. That insult by assumption is similarly painful if you assume an active and involved man must be a child’s helper, his babysitter or his teacher. More than once, when accompanying my son to a daytime therapy or doctor appointment, someone assumed that because I was helping my son during the day and because I was a male that I must have been a paid helper. “Dad” would have been at work, right? If you are a stranger and you really find yourself with an unmet need to know if I am in fact the dad, just say to me or my son “Sure is a great day to be out with Dad!” or something like that. And if I am not the dad, I’ll be sure to let you know.

10. Don’t assume my son and I are gay, either
If you see an older man holding a teen's hand or a younger man's one, think twice before judging us—not that being gay isn’t a fine thing. Who knows what the relationship is? I've seen the looks my son and I get at times from males, especially teen boys, and I know exactly what they are thinking. (American women are far less judgmental this way than American men are, but it still happens.) I hope those who give negative stares and under-the-breath comments are or were lucky enough to have a father or father figure to hug them and hold their hands in public with as much care and love as I provide my son. So come on, guys, lighten up. 

11. I'm not a "special needs parent" and I don’t have a "special needs son"  
Once, a school principal referred to me as a "special needs parent." I like to think that the depth of my character was formed both before and after I was a parent. And formed by things that have things to do with disability issues—and things that have nothing to do with them. And that I am much more than a parent solely concerned with special-needs issues. Likewise, when you get to know my son—when you really get to know him—his special needs can melt away and he can be funny, happy, sad, angry and all of the other things that children are. My son is my son, not my “special needs son.” And make no mistake, he is amazing. 


To learn more about submitting essays and poems for Dads of Disability, click here; like the Dads of Disability Facebook page here!

10 comments:

  1. LOVE hearing from a father's perspective!! Excellent points here, ones I've heard my own husband echo. Hope you'll guest post again soon!!

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  2. Love this - thank you. Kristen

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  3. WOW! Just WOW! You have covered off so many crucial points about dads and stereotypes related to raising kids with disabilities. This was a most interesting read. I am going to post a link at the Parent Voices at Holland Bloorview Facebook page, where parents share information and support. Look forward to your book.

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  4. Love this! You might want to swap out the blogpost title given number 11, though I know plenty of parents have different feelings about this....

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    1. Ah, that was my shorthand for a title!—Ellen

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  5. I love this too! Though, I don't mind being called the parent of a special needs son. I think the more we say the words, the more people will realize how many of us there are.

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  6. Great post. I LOVE #11 I hate it when people say stuff along the lines of "God only gives special children to special parents" it really upsets my mom the fact that I have CP doesn't make my family "special" it just means that my family's challenges are more visible than their family's challenges.

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  7. This is totally cool. I like to hear about dads taking care of their kids.

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  8. Very enlightening article! I hope you won't get offended if I ask an honest follow up question about something that has bothered me lately. As a person who hopes to one day adopt a child with special needs, I have simply developed a love for the kids and families who already do what I hope one day to be able to do. As such, I am more-than-averagely inclined or likely to comment on how cute one's child is or some other vague pleasantry. Not at all in the way that you referenced in point 2, just in the same way I would smile or wave at a "typical" baby or child that I saw or interacted with in Wal-Mart. These reactions or gestures on my part have sometimes been met with reactions of distrust or at times, plain and simple hostility. In one instance, a little boy (who just happened to have Down Syndrome) showed me and my husband a book at Barnes and Noble that he was looking at and we had a tiny conversation (while my husband and I were picking out a book for my niece) with him only to have his mother glare fiercely at me before dragging him away. Am I crossing a line in some way? Should I act like most other people when they encounter a child with special needs and simply smile and look away uncomfortably? Or should I just keep lighting up like a roman candle when I see one of these kids like I usually do. Any honest insight is appreciated.

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  9. I don't think you are crossing the line (well, unless you were - I wasn't there).

    Who knows if the reaction was because the parent was having a bad day, because the parent was a jerk, or because the parent thought you were overdoing it with a stranger's child? Those reactions could have been the same -- regardless of the developmental level of their child.

    I think you gave yourself your own answer though - you "lit up like a roman candle." So you probably were a bit overzealous. But again, I wasn't there. I'm just reading your words.

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Thanks for sharing!



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