I still feel like an imposter here. Not in the imposter syndrome way, but like I really don't belong here. "Here" is the disability community, specifically as someone who has been out here talking about raising kids who have special needs. I didn't set out to be a public voice for raising kids who have disabilities. I started writing about this topic as part of the writing I do about being dad. Then in 2016 I submitted a piece and was chosen to read at the Dad 2.0 conference in Washington D.C. Outside of that, I have had a long association with various disability communities, mostly through my work as an ASL-English interpreter and as an academic specializing in sign language.
With that in mind, I was honored and little surprised when I was invited back to Dad 2.0 as a panelist to discuss raising special needs kids. When I realized I was moderating the panel I was nervous. Who am I to be leading on this issue in any capacity when I know that there are other parents who are far more knowledgable and qualified? I think the best answer is that I'm decent with words and I can keep people on topic and keep conversations moving.
The panel was intimate and became more of a conversation with the audience, than a traditional panel. The panelists and audience brought a range of perspectives and backgrounds from active bloggers and activists, to people working in social services, to dads just now learning about and dealing wit their child's diagnosis.
Some of the conversation revolved around dealing with that initial diagnosis from both an emotional standpoint, and how we spring into action as parents in those early days. We talked about navigating the continuing journey, including some of the things people don't often consider when they think of raising kids with special needs. For example, we don't often talk about how much time parents miss at work and how much instructional time special needs kids miss with pull out time (i.e. speech therapy) and doctor's appointments. These are some of the hidden costs of special needs parenting. Finally, since Dad 2.0 is a bloggers conference, we discussed how much and why we should or shouldn't write about our kids. The consensus is that if you are writing about your special needs experience, it has to be about you and your journey rather than about your child. You need to be telling your story, not theirs.
I hope you'll give the video a listen/watch, and let me know what you think on the Facebook page. Also, please follow our panelists on social media.
I hope you're all having an awesome summer so far. I wrote an article For City Dads Group recently and I wanted to share the link here. It's about how strange it when your four-year-old gets a nose job. Lou had her nose re-done a few months ago as part of her surgery suite related to fixing her cleft. In the column I explore what the term "normal" means to me, and why it makes me uncomfortable.
Yesterday Lou had her fourth surgery related to her cleft. Recently I thought back to the day she was born, and how her condition caught us off guard. T had to be strong for Lou that day. Lou has been strong for us ever since.
It was a surprise. Not just her condition, the whole thing was a
surprise, for me anyway. We were in the middle of moving across the
country when my wife called to tell me she'd been feeling nauseous.
Starting a PhD program wasn't going to be the only big endeavor that
year. If I'd been planning we might have waited, but when I told people
this my wife corrected me, "This is exactly when I wanted to have the
second."
That spring I warned my professors and classmates that I
might disappear for a couple weeks after spring break. I also ruined the
Fourth of July for any of them who also had mid-April birthdays (if
that's you, maybe your parents like fireworks too). I made a lot of
jokes during those 40 weeks. It's how I respond to stress. One that I
kept coming back to was that the baby would have a cleft palate. I don't
know why I was fixated on that, but any time I expressed anxiety over
the birth that's what I went to. It wasn't totally out of nowhere, my
uncle had been born with a cleft.
From the beginning this labor
was different than our first. It progressed very quickly and lasted just
four hours in total. By the time the midwives arrived at our apartment
T was already in transition and ready to push. When Lou emerged we
were thrilled to have our first daughter. She was healthy and screaming
and purple, just like you expect. When I looked at her little
wailing face announcing herself to the world something seemed out of
place. "She's got something stuck under her nose" the midwife said
trying scratch it away. I knew what it was, "She has a cleft."
My
heart sank. Not because the cleft was a huge problem, as I said, my uncle had one,
in the fifties, and he's fine. I was worried about the scars she'd have,
but more than anything I was gripped an irrational thought, "I caused
this." It was my fault. It was because I had made all those stupid
jokes. No one really knows why clefting occurs. It's an almost random
one in 700, but two of the risk factors are family history (ding!) and
being Asian (I'm half Japanese), so in a way it is my fault.
Clefting
is usually diagnosed on the 20 week ultrasound. I found that out on the
Internet a few minutes after my Lou was born. Sure enough, it's clear
on the pictures if you know what to look for. It shouldn't have
been a surprise, the tech should have caught it. We should have had
time to prepare. Instead all we knew was what we could find online, so
naturally I was panicked. The one useful thing we learned is that Lou
wouldn't be able to nurse. The open spaces in her lip and her oral cavity
made it impossible to create a seal or to generate the vacuum needed to
suckle. If we'd labored in a hospital they'd likely have been able to resolve it there. But Lou, like all of our children, was born at home. Now it felt like a race against time. The baby needed to eat and
we had no idea what to do.
We called our pediatrician. He told us
he'd look into it and asked if we could come in. My wife tells me we
went, though I have no memory of being there. When we arrived he told us
he had set up an appointment at Children's National Medical Center. We were lucky, Lou had been born on a Tuesday, Cleft Clinic day at CNMC. By the
time Lou was three hours old we were starting a day-long series of
meetings with the team who would handle her care for the next 19 years.
We learned that she will need between 7 and 9 surgeries during that
time span. We learned that she will always have scars. Most importantly we
learned how to feed her using special bottles called Haberman Feeders, that look like tiny turkey
basters. Ever the joker, I nicknamed her "Zoidberg" after the Futurama
character. The most amazing part of that visit was T. There she was, sitting in the examination room taking it all in just three hours after giving birth. Each time a new doctor came in looking at the chart they'd pause, look confused, and then ask T, "Is this right? She was born three hours ago? Why didn't we come to you?" T would explain the home birth and the doctors would gaze at her as if she were a unicorn.
Having a cleft baby isn't easy. My wife pumped 11 times
each day for the first six months, before tapering off to 8. We had to
plan our lives around being able to pump, which is more complicated than it sounds. We couldn't be away from electricity for more than a couple hours at a time. T pumped in the car while commuting. She pumped at baseball games. She pumped everywhere. Still, it's also not as hard as
raising children who have more serious conditions. Lou has a speech
impediment. She has an IEP for speech therapy, but she'll grow out of
everything except the scars. She's grown to be a resilient and vibrant
girl. She doesn't mind talking about her cleft. Whether it's enduring
two major surgeries before she was a year old, or something she would
have had anyway, she's fearless. We started calling her "Crash" based on
her propensity to push her physical limits, then get up and dust
herself of with a resounding, "I'm OK!" She is. She was always going to
be. I shouldn't be surprised.
I'm always several months behind the rest of the internet. Whatever is popular right now is going to circle back to me this summer at the earliest. Part of the reason for this is that I wait to see if something has any staying power. Other times I just get curious about that thing that everyone was talking about. For example, I just listened to Macklemore's "Thrift Shop" about a month ago.
Today I'm thinking about a conversation the internet had about a year ago. It's about whether you should tell your daughter she's beautiful. I don't know if I have anything ground breaking to add, but I do feel like I have a perspective that I haven't seen in my reading on the topic. My daughter was born with a complete bilateral cleft lip and palate. Within a year she'd had surgeries to close both, but because the condition is complicated she is facing roughly five more surgeries between now and the age of nineteen.
The most obvious marker of her condition now, and likely as she gets older, is that she has scars on her upper lip where the cleft was sewn together. The surgeon did a great job, but with the skin being what it is there will always be a scar. It's noticeable and people ask about it. Sometimes they're nice, and sometimes they're not. Most of the questions are innocent interest. I don't know if I wish they would, or if I wish they wouldn't. What I do know is that she'll always have the scar.
So far, in her four years, it doesn't seem like it's had an effect on her ability to make friends. Maybe it has and I just don't know, but she's never mentioned any teasing.
I don't worry about her growing up and finding love. I am sure that she'll do just as well in that regard as any of us. I do worry about the time leading up to that. I worry about how she sees herself. I worry about how she'll handle the comments when they do come, which they will. I was called ugly a lot when I was kid. It really stuck with me. I worry that she'll face comments about her face, or about how she talks, her condition gives her a slight speech impediment. I worry about how her self image will be shaped by other people. So I tell her she's beautiful.
I tell her this almost every day. It's not the only thing I tell her. I also tell her that she's a hard worker, and that she can accomplish anything if she works at it. I don't tell her she's smart, because I do believe in the dangers of that and how it impacts how kids face challenges. But I praise her for her efforts and her improvements. I love her artistic side. I love her compassion and her imagination. I tell her all of this.
I also tell her she's beautiful, because if she doesn't hear it from me, and she doesn't hear it when she turns up at school for the first time, will she ever really believe it? I know she may not grow up to be a model, but she's got good looking parents so I know she's got a good shot to be beautiful to someone the way my wife is beautiful to me (and me to my wife). But I want my daughter to believe it. I want her to internalize how beautiful she is. I don't want her to feel like she has to put up with any crap just because she feels like she's not like other girls.
I also know that my ability to really control or influence any of this is minimal. There's a better than zero chance that she won't believe me. All the other voices will drown me out and she'll do what many teenagers do at some point, she'll think I'm an idiot and that my words aren't as important or as informed as the rest of the world. Or she'll think I'm biased, or "just saying that." I also know that self image is much more complicated than this one issue. And I know that if I raise her right in other ways the issue of looks won't loom as large for her as it does for me in my own head right now.
But I also think we do a disservice when we pretend looks don't matter. Sure, they don't matter in many ways, or shouldn't. As a society we tell people that looks don't matter and that if looks matter to you then you're shallow or cruel. Then we go out and do all the things that we do around beauty and celebrity and fashion. Looks matter. They matter to kids, and they matter to adults. I know this because I grew up always having the wrong clothes, or the wrong hair, and being called ugly. It affected me. It affected how I viewed myself, and how I interacted with the world. Maybe you think that makes me shallow, or weak. I don't think it does. I was raised to look past my exterior, and in some ways that came back to bite me. I don't want that for my little girl, who is so interested in being a beautiful princess despite my efforts to steer her towards baseball and super heroes.
I'm not worried about her growing up and being shallow or self centered or lazy because she thinks her beauty is her most important quality. With her scars, I'm worried about the opposite. I'm worried that she'll grow up seeing herself the way the meanest and shallowest of her classmates tell her they see her.
My daughter is beautiful. I know it. I want her to know it too.
UPDATE: Here is a video clip of my reading of Beauty at the Dad 2.0 Summit in February, 2016.
I sometimes feel guilty when I say that my child has special needs because I know that it's a cheat. Sort of.
The thing is, I know her needs will end, where as for so many parents of special needs children it will never end.
Lou was born with a surprise complete bilateral cleft lip and palate. In hindsight it was actually perfectly clear on the sonogram, if you knew what to look for, which my wife and I did not. We would have expected our midwife to catch it, but since she later lost her license after several instances of gross malpractice it's no surprise now that she missed it also. But it was a surprise at the time. Sort of. (UPDATE: T tells me the radiology person should have seen it, not the midwife.)
My uncle had been born with a cleft lip and palate, but only on one side. This was in the 1950s, in Pakistan, where my grandfather was working for some kind of NGO. The story that was passed down to me was that by the age of three my uncle was still just babbling. Doctors told my grandmother that because of the cleft my uncle was retarded (that's what they called in 1959) and would never learn to speak. It turns out he was just speaking a very obscure dialect of Urdu, which he learned from spending 10 hours a day with his nanny. While T was pregnant with Lou I used to joke that she was totally going to have a cleft. Then she did.
Lou was born at home (with a different midwife, not the one who lost her license) so we had no idea what to do with her. This was the midwife's 700th birth and it just so happens that the instance of clefting is about 1/700. She didn't know what to do either. Within two hours were at our pediatrician's office, and an hour after that we were the cleft clinic open house at our local hospital. We were lucky that Lou had been born on cleft clinic day. Right there we met the entire team that would be responsible for her care for the next 18 years. everyone who came in with her chart (case manager, surgeon, audiologist, speech pathologist, ENT, geneticist) did a double take when they read that T had delivered three hours prior and was sitting there asking questions about Lou's future. (T is a super hero). All the specialists kept using the phrase "severe facial deformity." That wasn't fun, especially since she was so cute. The worst part of the trip was learning that Lou would not be able to nurse. The best part was learning that early and being given the special feeders she'd need.
So we took her home and immediately nick named her "Zoidberg" because that is how we cope with stress.
People hear about her cleft and the first comment they usually offer, "Oh, well that's no big deal. They can fix that now." And they're right. Sort of.
The clefting is a relatively easy fix, especially the way they used to do it in the 1950s, all at once and right away. I assume they dealt with the further issues later, but I don't really know. No one in my family seems to remember. But right, she'll have totally normal function by the time she's 20. She'll always have a scar and she'll never have cupid's bow, and part of me will always wish she'd been a boy, because boys have an easier time looking a little rugged. Peyton Manning had a cleft, he's not considered ugly and I bet you didn't even notice. (You can hear it in his speech if you know what to look for). But she'll be fine.
To get to that point though she will need three or four surgeries on top of the two she's already had. All told it's a lip closure, palate closure, nose job, jaw realignment, tooth insertion or removal (depending on what her teeth do), and a possible palate lengthening (to help produce speech). But after all that she'll be fine. If it seems like a lot (or even if it doesn't) it's a lot. Seeing a three month old baby come out of anesthesia with a huge scar on her face is not fun. Having to do it again seven months later isn't fun.
The surgeries made feeding complicated. Well, more complicated. That T was hell bent on only giving Lou breast milk for the first year was also complicated. That part of it meant T was pumping eleven times a day at first, for 40 minutes or more each time. She later reduced that to about eight times a day. Still, that meant that not only did we have to plan every outing anywhere at any time around T's ability to pump, it also meant that even when she was at home she wasn't available half the time. This second fact was especially hard on our two year old son. That much pumping was also draining for T, both physically and emotionally. She happily nursed our oldest for two years. Spending twelve months as a dairy cow was not as rewarding.
I know how this reads to people who have experience with special needs children, "Being inconvenient isn't the same as a really having special needs." You're right. But there's more. Lou qualifies for and requires special services. She's had free in home speech therapy through the county. She'll have IEP and qualify for early entry services in public pre-K. This means dealing with the admin side of having a special needs child. Lots of meetings, and follow up meetings. She faces scrutiny in public, from honest comments from other kids, to ignorant comments from adults, to teasing on the playground. Luckily all of these have been rare so far, but I worry about her going to school. Still, by the time she's 20 she'll be totally "normal."
That's why it feels like a cheat. That's why I feel guilty saying that my daughter has special needs. Because even though that's true right now, it's going to end, and the end is going to be fine. Meanwhile I know people who have kids that really have special needs. Kids who have had open heart surgeries within minutes of birth. Kids who eat through tubes. Kids who have cognitive or neurological issues that may not ever go away. Unlike some parents I won't have life long fears for her. Her situation isn't life threatening. With a series of painful and invasive medical interventions she'll grow out of it. So whenever I think about the things Lou needs that my other kids don't, whenever I schedule a determination meeting or register for support services I feel a little guilty. I feel like there should be another category for people like us, for people who have short term needs. I wish there were a category that didn't make me feel like I was disrespecting the struggles of other parents who don't have a light at the end of the tunnel.
