November 18, 2009

From the margins

Walking for talking
Originally uploaded by Citizen Rob
Over the weekend, we participated in the 2009 Childhood Apraxia for Speech Walk in Fort Worth. I realize that I almost never use the term "apraxia" to describe Schuyler's monster, mostly because in her case, we know where it comes from, which is hardly the case for many or even most parents of kids with apraxia of speech. We're at least spared some of the mystery, which is no small thing. Think of all the scariest movies you've ever seen; it's the monster you CAN'T see that inspires the deepest dread.

Schuyler's particular affliction, Bilateral Perisylvian Polymicrogyria (PMG), isn't a disease. It's a condition, a congenital malformation of her brain. From this condition spring the symptoms and the disorders and the disabilities that kids with PMG experience, such as epilepsy and apraxia. It's a subtle distinction, and one that is honestly sort of meaningless in the big scheme of things, but it does mean that families dealing with polymicrogyria are also dealing with these other disorders individually. To a parent whose child is being tormented by seizures, epilepsy is a more immediate concern than polymicrogyria. Sometimes the monster's claws loom larger than the monster itself.

So we signed up, raised some money (and thank you to everyone who contributed!), and on a perfect Sunday afternoon, we all met in a park and did this thing. We showed up, freaky non-barking pug in tow (and how perfect was it, bringing our non-verbal dog to an apraxia of speech event?), and I think everyone had a fantastic time. I got to meet some people who'd read the book and have some very meaningful conversations about it, and most of all, we got to spend time with families who are, in one way or another, in the same boat with us.

There were two groups who stood out in my mind at this event, both of whom represent a crucial part of the disability community and have their own unique set of concerns, and yet are both deeply marginalized in typical discussions of disability parenting.

Unless childhood apraxia of speech accompanies other conditions with more obvious manifestations, many of these kids, like Schuyler, can pass, at least at first glance, as neurotypical kids. Indeed, in watching them play together on Sunday, it was hard to tell which kids were apraxic and which were siblings or otherwise unaffected family or friends. Obviously, this is a double-edged sword. It's a good thing, mostly. These are kids who have one major social obstacle removed from their path, that gut-level negative reaction to someone who appears different or broken. It's that thing that lives in our lizard brain, the caveman instinct that says to flee the afflicted lest you yourself suffer the same fate. Any parent of a child with an outwardly obvious disability can tell you how horrible that reaction can be, even from the most well-intentioned. It's a bullet that Schuyler has largely dodged, and for that I am entirely grateful.

But at the same time, there is another look, another reaction, one that has its own sting. It's the one that parents of kids with autism are often the most familiar with, the one that is stripped of sympathy because your child looks, and here's that word, normal. Your child doesn't have outward signs of their disability, no physical malformations, no tics, no spasms or limps, no prosthetics, no flags that say "Tread carefully here". They appear instead to be children who act out, who choose not to communicate or to interact socially in a way deemed appropriate. Their parents are asked why they can't control their kids. I still remember the surly woman who berated Schuyler for "mocking" her questions with her nonsensical babbling.

It's not a worse problem, and in about a hundred different ways it's the one I'd pick if given a choice between the two possibilities. (What wouldn't I give for that third choice?) But it's real nonetheless, and watching Schuyler play with these kids on Sunday and knowing that anyone walking past would see nothing out of the ordinary, I was struck once again by the largely unrecognized thing that those of us with nonverbal or autistic or otherwise neurologically atypical kids want from the rest of you, the recognition that this IS hard. Sometimes we're not looking for answers or prayers or Holland poems or "turn that frown upside down" inspiration. Sometimes, all we want is for someone to recognize the situation for what it is. Sometimes, all we'd like to hear is "Fuck, that's hard."

It's hard for families, and most of all, it's hard for these kids. They want to be "normal", and appearing so doesn't change that. Looking like a real boy wasn't much consolation to Pinocchio.

The other group I saw in greater numbers than usual at the event was fathers. A lot has been made of the fact that mothers comprise the majority of disability caregivers, and for every blog and book out there dealing with fathers of disabled kids, there are many more from the perspective of mothers. The numbers are what they are. I won't try to pretend otherwise.

But I think it's time to start examining some of the underlying reasons that this inequality continues, something beyond "Guys are jerks." Lately, I've had the opportunity to meet some amazing fathers. I spoke on a panel at the Texas Book Festival with two other authors, fathers whose involvement with their children's care was extraordinary and moving. I had lunch recently with a father looking for advice on his own manuscript, a deeply personal look at his experience with a child with autism. And at the Apraxia Walk, I met fathers whose commitment to their kids is unshakable and which should be unquestionable.

When fathers like these come up against a society that expects them to fail their children and which doesn't even bother to make a place at the table for them, they feel marginalized. WE feel marginalized, I should say, because years of loud-mouthed advocacy and publication of a book hasn't changed the fact that I still have to insist on that spot in the discussion, too. For fathers less aggressive and narcissistic than me, the path of least resistance beckons.

I understand that every one of the "special needs moms" websites and books out there has a right to exist and speak to the particular issues faced by mothers of broken children. But I also wonder how many of those particularly "mother" pressures would be eased if we started to make that place for fathers to feel like they are part of the discussion. Because everyone time a writer couches the struggles of families of disability in the guise of "mothers' issues", they are instantly excluding some of the voices that matter the most.

Not all of the discrimination in the disability world comes from outside. Not all the erroneous assumptions are made by people who don't, or shouldn't, know better.


Ceci said...

"I was struck once again by the largely unrecognized thing that those of us with nonverbal or autistic or otherwise neurologically atypical kids want from the rest of you, the recognition that this IS hard. Sometimes we're not looking for answers or prayers or Holland poems or "turn that frown upside down" inspiration. Sometimes, all we want is for someone to recognize the situation for what it is. Sometimes, all we'd like to hear is "Fuck, that's hard."

Exactly. Perfectly written. I commend you! My daughter has epilepsy, and so far it has been reasonably well controlled with drugs. But a few weeks ago, she got swine flu, had a fever of 104, and had a grand mal seizure. It was only her second one, and it reduced me to a sniveling bucket of tears and anxiety. So many well-meaning friends, co-workers, and family members like to say things like "but you handled it well" and "it's going to be all right" when they have no idea just how fucking hard it is to live with the constant fear that she'll have another one--and that next time, something really bad will happen.

Thanks for writing about these monsters so eloquently.

Christopher said...

I wish that I could have gone with you on the walk. Let us know the next time something comes up. We will gladly contribute again.

Zazzy said...

Rob, I think that what nearly all of us want as we battle our personal demons is for someone to understand, "Fuck, that's hard." It's a pity we aren't able to give that to each other as often and as freely as we should.

Niksmom said...

Rob, thanks putting a focus on the fathers. You're largely right about the marginalization. I coulnd't do the things I do for my son if it weren't for my husband and his incredible support. He is every bit a part of every discussion, meeting, important doctor's appointment (for big "scary" stuff & potentially-life-altering stuff) and I do see how outsiders want to turn to me first. Yet, he's ok with that; he tells me his advocacy and involvement look different. To him, providing a chance for me to be at home with our son is where he's chosen to spend his energy...for now. I suspect that, as our son grows and matures, my husband's role may shift yet again.

And, yes...Fuck, it's hard.

Douglas Family said...

I read your book, and it was amazing! Thanks for sharing your life with us.

farmwifetwo said...

"they want to appear normal" this is where the autism adult neurodiversity etc people and I differ. They think they shouldn't be normal, but I have 2 boys that would like to be... including the one that's full Autistic disorder (8). It's obvious in his attempts at socialization with other children. The other is NLD and will be "normal"... pretty much is already at 10. He'll tell you, and has told us already "I'm NOT autistic".

"Fuck this is hard" No kidding. But complaining about it means that according to those that think they know better than I.... will just tell you how horrible a parent I am for thinking that way.

In our house I do all the "autism" stuff. There was a time this pissed me off, now it just is. He's the "Dad". Maybe one of us just needs to be only the parent. The one the kids know will only play with. He doesn't go to appointments, he doesn't teach, doesn't play therapist, he just hangs out and watches TV and spends time with them. He's a farmer... he works long hours too. I've learned to appreciate that I can ask for advice, but I don't have to take that advice if I don't wish to.... It may not work well for another family, but for us... it works well.

Robert Hudson said...

"they want to appear normal" this is where the autism adult neurodiversity etc people and I differ. They think they shouldn't be normal, but I have 2 boys that would like to be... including the one that's full Autistic disorder (8). It's obvious in his attempts at socialization with other children. The other is NLD and will be "normal"... pretty much is already at 10. He'll tell you, and has told us already "I'm NOT autistic".

You know, over the years I get a question now and then, from people whom I assume are embracing that idea of neurodiversity, which I actually don't disagree with entirely, and certainly not for anyone else. But the question is this:

"If you could take Schuyler's disability away from her and let her be a 'normal' kid, would you?"

And I know my answer is supposed to be something about how her disability is part of who she is, and she might not be the strong, positive kid that she is without her monster, so I wouldn't change a thing about her because I love her just the way she is.

And I do love her the way she is. I don't think anyone could ever make a case otherwise. But my answer would still be simply this. Not only would I take her monster away from her today if I could, but even in the face of overwhelming medical opinion as to the futility of the effort, I do not ever intend to stop trying to do just that.

Matilda said...

This is such a great post for so many reasons. I'm teaching with Schuyler's Monster again this spring in my Medical Anthropology class, and this post is perfect for opening discussion about the differences between disease, illness, sickness, condition, and so on; but of course it's also great for talking about why entrenched gender roles hurt everyone involved, the expectation that women act as stewards of familial health. Thanks!

MommaNecey said...

It *is* hard. I have one friend who recognizes that. She doesn't pity me/us, she just stands in awe. Sometimes, we need that. I don't want pity, but understanding is nice. I don't think other people can fully understand where we are, I'm not even sure I expect them to. But it sure is nice when they see, actually SEE, that this is hard. Thank you for those words. And also, thank you for being such a supportive dad. As a single mom, it's easy to forget that there are actually dads out there who give a crap and don't just sling around uneducated opinions when they don't bother to show up for IEP meetings and doctor appointments.

The Frederick Family said...

First of all, Thank you for your book! Schuyler, is the first child other than my own child, Jacob, who has apraxia, that I have encountered (so to speak). Had one of those moments last week, We were at the grocery store and Jacob was exictedly looking at the DVD's for sale, I am guessing this lady heard him talking in Jacobese and she asked "What does he have?" I told her "spina bifida and Apraxia" and then she walked away. Thanks lady, for shining a big spotlight on my child who is different, disabled, broken whatever and ruining my shopping trip, by reminding me how hard it is. Thanks Rob, for your book. I finished it when I got home, and remembered I am not alone.

trishag said...

I answer "What does he have?" questions with, "He has the decency to not ask strangers rude personal questions."

Melissa Luxmoore said...

"Not only would I take her monster away from her today if I could, but even in the face of overwhelming medical opinion as to the futility of the effort, I do not ever intend to stop trying to do just that."

Hear Hear....I'm with you on that.

Yep, it is really hard! And Yep, I'd change it in a heartbeat.

We recently did a film festival fundraiser to try to cover some of my daughter's therapy costs and my husband stood to make a speech and tell a little about Ayla. This is a man that always comes across stoic, always keeps himself in check. But I think when he actually spoke about Ayla's condition, said it out loud instead of to himself, he showed the whole crowd how hard it was. He broke down and the crowd just fell silent. It was the greatest validation that this is really fucking hard.

Anonymous said...

Would I take away my son's autism so that he would be a "normal" kid? In a heartbeat. Yes, I love him the way that he is, but who gives a damn about what I think about it? It is about what HE thinks and feels, and for all the times that he isn't aware that he is being teased, picked on, messed with, talked down to, or taken advantage of, there finally starting to be times that he DOES realize it --- and soon, he will start to wonder why him? And when he asks me? I still don't know what exactly what I'm going to say.

I applaud your bringing fathers into the light and the discussion because dads work just as hard as moms in the partnership of parenthood, even if, as one commenter said, it is doing the work of being the "buddy" that so many of our kids need. My husband and I back each other up with keeping our son working on his speech and social cues, but in the midst of that, I sometimes think he feels lost, wishing that someone could just never do any of that harping for his "growth" stuff and just hang out. I know there are times that he feels personally criticized or not good enough because of it too, and damn right, I wish that I could wish that away.

I will say that, as the mom, though people expect me to the primary caregiver, I've also experienced their cursory dismissal as a 'hysterical woman', where they stop and pay attention when my husband says the same thing about our son. I've worked damn hard to become an expert on various symptoms and conditions that affect my son and his classmates, and yet, I have been totally ignored by teachers, psychologists, doctors, coaches, and other parents -- with all of the same stopping to listen when my husband spoke. Maybe it was because he was a man, maybe it was because of their own experience of hearing all those moms speaking and not hearing from dads, I don't know.

I'm ALL FOR the praise for the involved dads, no matter how they are involved. Just offering that when it comes to recognition or respect, it is still definitely not greener on this side of the fence.

And yeah, how many of us would just like the "Fuck, that's hard," from our own families? Great post.

Rena said...

my sister's son is Autistic. My daughter is deaf-blind and ataxic, so her disability is pretty obvious. But when I compare the two, I think it's harder for my sister. Her son appears "normal," but has some wild behavior. She gets a lot of those looks, the ones that say "Why can't you control your child." My daughter get a lot of sympathy, which makes people eager to help. My nephew is shunned.

Jeff said...


It was so nice spending the day with your family! Watching our daughters play together was something special that I will never forget, not to mention all the people who showed up for this touching event. As we all go our seperate ways I have hope for all those, inlcuding myself, who don't have answers yet. This is a journey that seems to have no end. Keep fighting that journey as some days are very special... even if it's just a friendly walk in the park...

Jeff Collins- Ava's "Gaggee"(daddy)

Carol Askew said...

"Sometimes we're not looking for answers or prayers or Holland poems or 'turn that frown upside down' inspiration. Sometimes, all we want is for someone to recognize the situation for what it is. Sometimes, all we'd like to hear is 'Fuck, that's hard.'"

Thank you!!!! So true. And yes, I'd take my daughter's apraxia, dysarthria, and epilepsy away in a heartbeat if I could.

Elizabeth said...

In my work with as Parent Co-Chair at the National Initiative to Improve Children's Healthcare Quality, I have met many fathers who are active participants in the lives of their children with special healthcare needs. Every single one I've met brings a unique and powerful perspective. I'm so glad that you highlighted that! I'm wondering, more on a personal level, if you've ever read the Nobel laureate, Kenzaburo Oe who has written some intense stuff about his experiences parenting a severely disabled child.

Thanks for walking and giving and talking, Robert.

Elizabeth said...

Oh, and I forgot -- in reference to your "fuck, that's hard," comment -- I have always wondered why people say only "it could have been worse." I like to say, "yeah, and it could have been a whole lot fucking better, too."

Anonymous said...

Wow, Rob. I hear you and I think that in many of the cases of families with a disabled child (my own included), it's the man that has the highest earning potential, so he is relegated to bringing home the bacon and woman takes her position as the primary caregiver. The pressures on the breadwinner of any family are a given, but they're certainly magnified for those who have mounting medical bills. My poor husband works his ass off and in addition to financial stress, spends a great deal of time worrying about the load that I have to carry as the primary person dealing with Ethan's various monsters. (and we got to add an autism diagnosis to the pile this week)

So much to ponder here...

C said...

Well said, Rob. As a single mom I too forget that dads are often a huge and blessed part, sometimes the sole or leading parent, in this kid/therapy/etc. picture. But I am so glad you and they are in it. God bless every one of you. If I could throw confetti I would. Really.

And yes, about it being hard. And yes, about trying to fix things. I am puzzled when a particular person I know puddles at the sight of Q and says things about wishing he could be made perfect. My gut reaction is that he's already perfect because he is who he is and then I have to resist the urge to roll my eyes and flick someone on the head... But it doesn't mean that I wouldn't make life different for him if I could. It would be stupid, I think, to want any less. Who wouldn't want their kid to be able to sit unassisted, self-feed, stand, walk, and talk? I mean, duh! But Q has a good life, most days. He has people he loves who work hard for him, gourmet purees for most meals (rolling eyes at self), and activities he loves to do. I don't know what I'll do as recognition dawns in his eyes that the rest of his peer group is wiggly and he isn't. It is what it is and I only have what I have to work with... (I still manage to annoy the therapists regularly -- somewhere they have a file on the pushy mother of poor Q.)

The one thing I think most of us wrangling monsters of various breeds wish/clamor for is recognition that we're doing the insurmountable. And that many of the people who look in from the outside with "good advice" would last about 16 minutes if suddenly dropped into our shoes. We need some sort of t-shirt. "No platitudes today, please."

Thanks for this, Rob. And many salutations to other dads fighting the good fight.

Pia said...

Great post!

Question for you... I'm wondering about your take on HOW to get dads to the table? My hubby loves my son wholeheartedly, and attends important meetings. He asks how he is doing in therapy. He cares deeply. But, in many ways, he has left the day to day business of dealing with my son's 'issues' (apraxia and autism/PDD) to me. I attend every therapy session and am in constant communication with his teacher. I read the books and search the internet. When it comes to his disability, I am the expert and in charge.

I would love love love to have him more involved. I have invited him to take pieces on, to read some books I have read. To read books he finds... or just find some! I have encouraged him to ask questions and have his say. I try to respect his opinion and let him have a voice. But I can only do so much and still... he is removed from much of the process.

I certainly do not see it as "men are jerks" situation (I reserve that for when he leaves his underware on the living room floor. I mean, really...!) But I am at a loss for how to get him more engaged.

My advocacy for my son is influenced highly by my involvement with his day to day struggles. I am there. I am witness. I blog for many reasons (its cheaper than therapy, for one). I am sure my husband feels somewhat mute (pardon the apraxic pun) regarding this.

Thoughts on getting our menfolk to the table? How do we mommies help make a place for those daddies? Because lemme tell you: Fuck, that is hard too.


Robert Hudson said...

You know, that's actually a really good question. My gut reaction is to play to his strengths. I think that probably goes for every parent. Julie and I don't both do the same things with Schuyler, and we don't try to fulfill the same roles in her life. There are things that come more naturally for Julie, and things that I do well, and we strive to recognize what those strengths are.

Those strengths can apply to the more public, advocacy-related aspects of raising a kid with disabilities. For example, between the two of us, I'm probably the more skilled at public advocacy, online research on Schuyler's condition, AAC technology, etc., so when we go to an IEP, I'm usually the one armed with those specifics. (I believe that makes me, in the eyes of many educators, something of a dick.) Julie is extremely skilled at organizing Schuyler's time, particularly where her homework and daily routine is concerned, so those tremendously vital issues typically fall to her.

I think it's important to recognize the different things that each parent does well, not in a gender-specific way but rather as individuals, and search carefully for the ways that those skills can be put to use.

Araby62 (a.k.a. Kathy) said...

As someone who's lived with a largely 'invisible' chronic illness (type 1 diabetes) for nearly 27 years, I feel for you guys. I've endured the stares of people who have gasped/made faces when I do my insulin shots in public or do a blood sugar test in the open. I usually head to the bathroom not so much to spare their delicate feelings, but to give myself some privacy. My monster wasn't chosen either, I don't understand why people think I did it to myself (eating too much sugar, etc.) and feel the need to unload their opinions about diabetes on me.

Thanks for writing this.

Pia said...

"...I believe that makes me, in the eyes of many educators, something of a dick."

This statement made me laugh out loud! That, actually, is one of my husband's strengths! Not that he IS a dick... but he can have a very "dick-ish" quality when he feels something isn't right. There are numerous occassions when we do a "good cop/bad cop" routine. He does a pretty damn good "bad cop".

Thanks for the 2 cents! I will ponder how to harness his talents...

Another thought... I realized as I was pondering all of this...that everyone... and I mean everyone... involved in the therapy and education of our son is female. In fact, given my hubby's fine abilities in the "dickish" arena, I find myself shielding some of our providers lest they misunderstand. (He is from Texas and a straight shooter. We live in Minnesota and are surrounded with Minnesota Nice. Dangerous mix).

Given the uniquely female environment we have, I wonder how similar that is for others (I imagine it is a common story). I would imagine that might put some dads off? Kinda like being the only guy at a baby shower?

Just a thought.


(BTW, Give Bernie Hell!)

KarenH said...

I can't thank you enough for saying straight out that of course you would take away Schuyler's monster if you could, and that you fight to do so. It is currently trendy in my neighborhood for parents of kids on the autistic spectrum to talk about how they would never change their kids who are adorable and perfect the way they are etc. I have felt so alone in my pain of witnessing my 13-year-old daughter's struggles to make friends and her utter inability to act and think like a typical girl her age. I think many of the parents who say they wouldn't change their children have kids who are still quite young and have the cuteness factor; and they haven't hit middle school peers for whom conformity and sameness are the highest values in existence. Wandering a bit here.. anyway, I am grateful for your courage in calling a monster a monster and not prettying it up. I don't feel so alone today after reading your blog and the responses of readers.