It's Father's Day, so it's appropriate (and very cool) that I can point you to an interview I gave ("Fathering a Daughter with a Hidden Voice") to an excellent new resource site, Support for Special Needs. It was a fun interview that came out of a nice long chat with Julia Roberts, and I didn't make a single Pretty Woman joke, because I am occasionally capable of being a grown up.
Father's Day can feel a little strange for the fathers of broken children. Most of us feel a little broken ourselves. The reasons for that disconnect might not always be so obvious. The numbers are pretty clear; the primary caregivers for kids with disabilities tend to be mothers, and that's just a fact. I suspect that mirrors neurotypical society, but the fact remains that many, many fathers of special needs children are on the outside looking in on the day-to-day lives of their kids, and often by their own choice. It's a shameful truth, but one that does no one any good to ignore.
I hear it often. "I think it's so great that you're such an involved father!" I see the looks in the eyes of members of Schuyler's IEP team, mostly from the new ones, when I walk into the meetings, and when I speak up, as if they'd almost expect to hear Schuyler talking before a father would. And I see the broad generalizations, even here. In a recent post, when I expressed my own self-doubts and admitted that Julie and I hadn't fully faced some aspects of Schuyler's disability head-on, one commenter just mentally adjusted that and turned it into how Julie is the strong one, no self doubts and no illusions, but me? I was just like this commenter's husband, in denial and uninvolved in the details of my kid's education and care. In her head, the narrative reads that way, and so it became my narrative, too. And she's not alone.
Mostly, though, I get the opposite treatment. Some people treat me like an aberration. I'm like some bizarre extraterrestrial father who puts his daughter's well-being ahead of his own, one who goes to all the IEP meetings and all the parent nights and the playmates. "Here is a father who gives everything to his kid, and puts her happiness ahead of his own! Isn't that wonderful and weird?
Well, I call bullshit.
It seems like almost everyone has so much anecdotal evidence of crappy fathers who don't step up on behalf of their disabled kids. But in the past two years, since my book came out and I began traveling around and meeting other families, it has been my honor and privilege to meet some amazing fathers. And I'm not just talking about the ones who show up to the IEP meetings and doctor's appointments, either. I'm talking about extraordinary dads whose work on behalf of their own kids have changed the world for countless others, too.
Richard Ellenson saw a need for his son, whose cerebral palsy left him unable to communicate and for whom existing speech devices were inadequate for his particular needs. The device he created, the Tango, has been praised for its innovative design and success in social integration of AAC. Dan Habib turned his fight for full integration for his son into a celebrated documentary and an ongoing project at the University of New Hampshire, dedicated to creating and developing more inclusive schools. I've met extraordinary authors and advocates like Rupert Isaacson and Michael Greenberg. I've been in the company of some amazing fathers.
Amazing fathers, and yet they're exactly like all the fathers out there who work tirelessly for their children with disabilities. What sets these fathers apart, in my mind, is that rather than trying to find a way to fit into our society's narrow idea of what fathers are supposed to do, they've taken their talents and their abilities and they've forged into territory that hasn't always been welcoming to them.
Plenty of fathers don't do that. Is that because some of them are crappy fathers? Of course. But how many fathers respond to the low expectations of our society and our system, one that assumes that the mothers of these kids will be the ones who will take care of them? How many fathers go online to find information and end up on page after page of resources for Special Needs Moms? How many read the poems about how special those moms are, how hard they work and how they are the only ones these kids can count on? I know I see those sites and those posts. I see them every day, and even now, after everything I've said and done and written, after as many speeches as I've delivered and as many books as I've signed and as many IEP meetings I've attended and been a pain in the ass in, even now, I still hear the tiny voice in my head, the one that whispers "Your presence is not required. Your input is not necessary."
Look, fathers need to get involved. Fathers need to step up and take on their share of the work. That much is clear. That's not just in the disability community, either, but I believe it's even more critical that it happen in these families. This isn't an episode of Mad Men; the old models of fatherhood no longer work. I'm not sure they ever really did.
But there needs to be an accompanying significant shift in our societal attitudes. There has to be a change in how fathers are seen. Fathers of broken children aren't volunteers. We don't want partial credit just for showing up. And we don't want a pat on the head. We want to be involved. And we should be. You as mothers and as society should have the expectation that we're going to be, and with that, you need to be willing to step back and let our talents shine, let our unique perspectives contribute fully.
I think you might be surprised at what you get in return.
20 comments:
yes. thank you. my husband is a very involved father with our own broken daughter.
Wishing you a lovely day and I'm glad to be able to step back a bit, and grateful my husband has been more than glad to step forward and out with our son.
It's shifting, Rob. I had a teacher who was single parenting a daughter and had her come with him to the school when she was sick, sitting in a tiny trailer with hot tea and cartoons, just outside the classroom while he teaching Advertising, Marketing, and etc. He was an inspiration too. Thanks for being part of the shifting. I'm linking you - maybe it can spread a little farther.
Word.
As the wife of an involved father in our special needs kids life, I couldn't agree more.
By stepping aside and letting him do (a practice I had to practice at) gave us both a gift - his relationship to his kids and our family and my relationship to him. It's not so extraordinary for him anymore for his involvement.
If I died tomorrow, he'd miss me, sure (because who wants to do this alone) but the kids wouldn't miss a beat in their care educationally, medically, or mentally.
And thanks for the interview and link to SfSN...I so appreciate it!
Bravo, Rob. Thank you for writing this. And Happy Father's Day.
I love this post. My mother died when I was quite young, so my brothers and I were raised mostly by our father. One of my brothers has some pretty serious psychiatric issues that manifested themselves at a young age, and my dad was at every meeting, every appointment, and took every difficult phonecall . . . there was no one else to do it. My dad's not perfect, but he certainly never taught us to believe that it was okay to distance yourself from your kids or play only a half-hearted role in their lives just because you happen to be the male parent. So I always find it irritating and offensive when I hear the too-common assumption that fathers just can't and shouldn't be expected to do certain things for their kids, that if one parent is going to be a "stay-at-home" it should be the mother, etc.
Also, since I've never commented before (although I've read your blog for almost two years), I'll just take this opportunity to tell you that I really enjoy reading it, and that I think Schuyler is a champion. A really adorable champion, with awesome fashion sense.
Happy Father's Day. :)
Amen!
I remember clearly the day our daughter came home from the hospital after being born. She was our second child and had been moved to a NICU in a different hospital. My doctor checked me out early so I could go be with her, but I wasn't really well so her dad was doing all the childcare of our son and all the dr. meetings for our daughter. She turned out to only have an infection and was released from the hospital. But the nurses gave us trouble when it came time to discharge her. They insisted that I be taught how to bathe and diaper her even though this was our second child. I wanted to lay down so her dad said he'd take the training. They refused to teach him because they 'needed to teach the person who would actually be changing the diapers'. As if he hadn't already changed hundreds of our son's diapers. As if he wouldn't ever change any of our daughter's. As if he was planning on sitting on his ass while his sick wife who should still have been in the hospital was doing all the work. It may well have been the stupidest thing I've ever heard anyone say.
As a father of a son with Childhood Apraxia of Speach I can really relate to this post. I am the one who does all the research on Apraxia and reads the forums and blogs and they are very mother orientated. I stayed home with my son for the first two years and when we were out and about women would often state "oh your on babysitter duty today" I would be like "no, I do this everyday" Dads are not babysitters. We are not substitutes to mothers. We are involved with our children whether they are "normal" or have a special need. Women need to get it into their heads that men can do a lot more than just bring home money. I'll get off my soapbox now.
Thanks for the Blog Rob I have been reading it for about 6 months and it makes me feel less alone as a father.
Amen, and thank you. I recently had my first kid, and the entire experience, from prenatal care through the birth and first days at the hospital, was full of subtle but insistent messages that I was not needed there. The doctors often ignored me, and were openly hostile if I asked questions or raised concerns. My wife was on mag sulfate after the birth (which can make people groggy and confused), and I was told that the baby couldn't sleep in the room with us because there was no one there who could take responsibility for caring for him. (Thankfully, there was one excellent, efficient, and very nice pediatrician who took care of that issue before I needed to get bent out of shape about it.) So far, my kid has no special needs, so I can only imagine how much worse that makes everything.
I don't want to say that you're an inspiration to me as a father, since that sort of twee crap makes my stomach turn a bit, but the fact of the matter is that, when it's 3 A.M. and I'm feeling tired and grumpy and the last thing I want to do is calm down a fussy kid one more time, I do, sometimes, think to myself, "Look at what Rob Hudson has to deal with, and how much he puts into it. So far, you have it easy. Shut the hell up, Self. Suck it up, and be a dad."
Thanks for this post, Rob. My husband is 110% involved, and luckily for the kids, in different ways than I am. We are a team that works well together.
I always get irritated when people say, "Wow you are lucky your husband is so involved."
I always say, "As opposed to what? They are his kids too."
On supports groups I visit for my daughter, there are single dads raising their very involved children and doing one heck of a job.
Yes, there are crappy dads out there, but there are crappy moms too.
People should stop acting like a good dad is as rare as a dancing monkey and instead expect that to be the case.
R.
I do think you are a much rarer breed than this post lets on but agree with the last reader that
"People should stop acting like a good dad is as rare as a dancing monkey and instead expect that to be the case."
Um, yeah. Speaking of dancing monkeys, did you see this dancing bird? http://www.youtube.com/watch?v=0bt9xBuGWgw
Great post Rob. I have a very involved husband who attends everything, does everything in equal measure for our daughter and yes, I see the looks he gets. Thanks for again putting the words out there for all to see.
If my ex-husband had been even a 1/3 as involved with our "broken" son's life as my current husband of 15 years, we wouldn't be in the midst of a step-parent adoption. My husband goes to all the IEP meetings, even the emergency ones, and oh my, there have been a lot of those! In fact, he goes to more of the meetings than I do, because he has a more flexible schedule, and he frequently gets the "look" along with the question "Where's Mom?".
Yes! My husband is an amazing man who has been the stay at home parent since our daughter was born 5 years ago. In addition to the care of our two kids, he cooks dinner for us every night, and does a large part of the cooking and cleaning. It has taken some purposeful effort on my part to let go and let him figure it all out in his own way, but it has been worth it. Our kids know that they have a team of two parents who are working together in everything.
But it is amazing the kind of responses my husband has received from others (strangers and family alike). Men think that his masculinity is somehow in question now, and often make really ignorant/hurtful comments to him. Women (especially the other moms at the park, etc) are often suspicious and not willing to socialize with him.
It's been really hard on both of us to deal with the social stigma of reversing the traditional roles. But it's the only way our family can survive financially and it works for us. Thanks for speaking out both on the need for dads to be more involved in their families, and also on the need for women to step back and allow them in.
I always say that if it weren't for me, my daughter would be dead or worse. But if it weren't for her father, I would be dead, totally.
Thanks for this terrific post --
Right on! I hate it when I'm out by myself and people ask if my husband is at home "babysitting" our child. No, he's being a parent, thank you.
I haven't been here in a long while. Schuyler has grown into a beautiful young woman, and you are as prolific as ever! Adding you back to my blogroll now that I'm back to blogging. So glad you're still around...fighting monsters and giving your daughter a voice.
Rob- I am a speech-language pathologist who often supervises budding SLPs. One of my students shared your book with me (It was assigned reading for her in her AAC class.) I connected with your story on so many levels. First my own first child, Meagan, was born just a couple of months before Schuyler. Your descriptions of preparing for and having one's first child brought back so much for me in a very real and precious way. Professionally, I took much from your reflections on interventionists who were well-meaning, but not particularly helpful countered by those who have earned your eternal gratitude for the gains they helped Schuyler to make. I strive to be more of the second kind of interventionist, but your book was a stark reminder of the nagging feeling I can get that says, "Is any of this really helping this child?" You brought this and so much more to light for me with your unabashedly honest writing style and your hilarious sense of humor. Sometimes I found myself laughing out loud as my husband slept soundly in the wee hours of the morning. Thank you for sharing your love and your work in such a poignant way. Angie
You've said all of this very well, and all of it could apply equally well (including the media bias) to mothers/fathers of neurotypical kids. Moms are seen as the REAL parents, Dads are just ... there. Pisses me off something awful, actually.
Hope you had a wonderful Father's Day, Rob.
My husband doesn't go to IEP's... they are very difficult for him. It use to bother me but I take our FSW instead. NOT, that he isn't a good Dad... but we all have our strengths and in our house, this one is mine. Years later I like the fact that I make the final decisions... it's probably saved us hours on fighting :)
Each house is different.
Truth is, I have discovered that it's not just strange for a father to be involved... parents being involved in an abnormality. In the end most cave in and do as the system tells them.
There are few of us that stand and fight.
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