May 6, 2010

Purple snowflake

Some things are hard to see when you are standing close to them. The passage of time masks growth and allows you to hold a tiny little baby and barely notice as she grows into an actual large human person thing.

And then you receive her fourth grade school portrait, taken by someone else at a place you never saw, on a day like any other when you put your baby girl on a bus and sent her into a world that sees her as a five foot tall preteen girl, You see the photo, and the person looking back at you is both the most familiar being in the world, and a mysterious stranger.


Schuyler is ten years old. I knew that, of course. But when I look at this photo of a girl who is not a baby and isn't even going to be a child much longer, the reality lands on me in a way that I guess it hadn't before.

In most ways that's no different from any father who has a hard time letting go of his little girl, I suppose. It's a cliche, I know. It's not one I particularly enjoy embodying, mostly because in matters of Schuyler and her well-being, I pride myself on being a fierce advocate for her. It's important, that position, the most important in my life, the one that really matters. I feel like it requires clarity and understanding and focus. Being all mushy-headed and "Aw, my widdle baby is all grown up, waah" feels like an idiotic, cartoonish distraction. I have no desire to be that familiar buffoon dad from any of a hundred forgettable sitcoms. And none of us really has the time for it, either.

As with all things Schuyler, however, it's not that simple. Last summer, I spoke briefly with a doctor and researcher who is familiar with both Schuyler and her monster; indeed, he is one of the world's top experts on disorders like hers. He pointed out how well Schuyler is doing and how unusual her manifestation of polymicrogyria really is. On one hand, her speech is affected, profoundly so. At the same time, she's completely ambulatory, can write and eat with only minor impediments, and appears to be cognitively high-functioning as well. She walks through the world like a perfectly normal little girl her age, and yet she's not like any other.

"I've never seen PMG manifest itself with quite such a narrow focus," he said. "Schuyler is probably unique in the whole world."

I knew that, I've always known that on some level, but to hear it put like that made it even more real. Every kid is different, I know; every child is a snowflake. But as far as that goes, Schuyler is wholly unique, like a purple snowflake.

Being Schuyler's father, then, isn't a job that always corresponds to precedence. She's a ten year-old girl who wears a bra and wants to experiment with makeup and dances around the living room to Lady Gaga. She argues with her parents; she fake pouts when she wants something and does it for real when she doesn't get it. She's like your kid in a lot of ways.

But Schuyler is also a ten year-old girl who has never had a conversation on the telephone with anyone other than her parents; actually, I don't think she's ever dialed a phone in her life. When she writes sentences using her spelling words for school, she composes pieces that work grammatically and convey meaning but also demonstrate that her understanding of language and the world is abstract and different, developed as it has in an internal world mostly her own. Schuyler has never whispered a secret in another little girl's ear. Indeed, she doesn't spend much time with other kids her age outside of school, which breaks my heart. She lives a sheltered life, of necessity, and I can feel how that's beginning to stifle her a little. But the ways out of that are complicated, and they require a level of peer acceptance that I simply can't control.

Schuyler is growing up, and she's doing so in a world that isn't completely sure what to do with her. It scares me, in part for reasons that are just those of any father in the world, but also for some that are literally mine and mine alone. In that respect, I'm a bit of a purple snowflake, too.

37 comments:

BlackOrchid said...

You really got me this time, Rummel-Hudson, damn you. (sob . . . sniff!)

She's just so beautiful!

Fizzlemed said...

The world would be a wonderful place if every child had a caring, wonderful father.

CharmingDriver said...

Jesus christ she really is not a little girl anymore, Rob & Julie. She's gorgeous but man do I not envy you the next several years. For all the typical reasons in addition to the very atypical concerns. But holy shit-balls has she grown up.

Sarah said...

I recently started working in one of the best college Disability Services offices in the country, and every day I am amazed at the things these kids can do and the grace with which they do it. (Including a girl with CP with a pink Dynovox who writes original songs and doesn't like to be called "amazing".)I'm sure it's nothing short of terrifying to see Schuyler becoming this quasi-grownup, but I think you can rest assured that whatever she does on her way to adulthood, she will be extraordinary and will draw the right kind of people to her with her fantastic personality and (gulp) beauty.

Carol Askew said...

I know you probably don't want to hear this - but HOLY COW - Schuyler looks so grown up! :-) Thanks for your thoughts on this subject. We're right behind you. Megan is 9, in 3rd grade. Yikes.

Anonymous said...

As someone who recently left Dallas for Portland, I don't envy you the challenge of raising a teenager in Plano, especially a teenager who's at all "different". I know liberal towns didn't work well for you guys as far as elementary schools, but man it'd sure be a lot easier from here on out to be somewhere where being "weird" is celebrated, at least to some degree.

But wherever you guys are, I know you'll make the best of it, and carve out your own niche. Good luck!

Anonymous said...

"every child is a snowflake"

Really like that, Rob. Thanks.

Our snowflakes have no diagnosis, but that expanding world thing (warm air) hits each one of them eventually much to the snow-maker's stress.

Miz Kizzle said...

It's sad that she doesn't have friends. Way way kids text each other all the time I don't think they actually have real telephone conversations any more. It's more like: "At mall w BFF BRB C U ltr."
Have you considered a summer camp for kids with communication difficulties? I know she's unique but maybe there's someplace where she could meet girls with whom she'd have fun and not feel too "different.".

Robert Hudson said...

We've talked about those camps. But GOD, they are expensive.

Melanie said...

What a beautiful post.

Niksmom said...

Rob, I don't have anything to offer in terms of how to handle Schuyler's growing awareness of the diffferences. Anonymous has a good point; it's easier growing up as an adolescent and young adult in places where greater neuro-diversity is accepted and/or celebrated.

On the camp issue: they ARE expensive but most specialty camps have scolarship or grant programs or campers may be eligible for subsidies throuhg something like UCP or Variety Club or the ARC...or something. It's worth exploring further and inquiring about funding.

Anonymous said...

I teach a sunday school class with 6 11-12 year old girls- and granted- they are more likely to be on their best behavior for me- but- the kids don't seem as mean spirited as the kids Schulyer is exposed to-and the one who WAS mean doesn't attend anymore- after I asked her mother what works with her child in terms of changing behavior-. These kids do tease eachother- but- I've not seen malice. I don't know the answer- but maybe a group of kids who are a few years older can mentor her-or a year younger where she can be a leader...

Anonymous said...

Can Schyler type, or text, like Miz Kizzle mentioned? I've always been curious about how much more deeply she might be able to communicate as she got older and had options other than the Box of Words (writing by hand, typing).

Kim W. said...

I was about to respond to the "anonymous" above by pointing out that it sounds like part of the problem may not be whether Schuyler can type, but whether there is a collection of people she can type to...

But then it hit me smack in the face -- PEN PALS.

I didn't grow up anywhere even near the same cloud that Schuyler's from, but I have to say -- having a pen pal ROCKED. Or rather -- having a pen pal ROCKS, because the pen pal I got when I was about Schuyler's age is STILL one of my best friends; she grew up in Ireland and I grew up here, she's a physics teacher in County Cork, she's fluent in Gaelic (and has been going through an ongoing campaign to teach me the odd word or two), and is hands-down flat-out fantastic, and we've been in contact for the past 30 years.

So -- Rob, I'd bet that Schuyler's about the age when an international pen pal would be a really, really cool idea -- for a lot of reasons. It was for me.

Anonymous said...

Rob, this camp is in your neighboring state. I've volunteered there in the past and it's a good organization. I searched their website and can't find out prices, but the camp IS a non-profit and offers scholarships.

http://www.campaldersgate.net/index.php?option=com_content&view=article&id=2&Itemid=17

Unknown said...

I think you would feel the same regardless, You guys have done a incredible job!! Be proud!! I have a 3rd grader soon to be in 4th, Time all of a sudden slaps you in the face!

C. said...

Rob (can I call you that since we don't actually know one another?). Let me start by telling you that I sat in the wind and chill this morning awaiting my winter tires to be changed oblivous to anything by finishing your book which started about 3 days ago. Schuyler's story which is as much yours' and your wife's is remarkably compelling. Your ferocious tenacity in revealing her issue, advocating on her behalf, and acknowledging her right for a meaningful role in this life is beyond remarkable; you didn't curl up into a ball and declare 'uncle I give up', not once! She is needless to say uniquely gifted and an amazing little girl (big girl, pre-teen). She is blessed to have you in her corner and in her life and you clearly feel the same way. All that to say that I loved your telling of your journey, I love your blog, and keep doing what you are doing please.

CarrieT said...

As always, thanks for sharing from your heart. So many of us with our own versions of purple snowflake kiddos can relate and I personally find comfort in knowing other parents who feel like I do. Schuyler is growing into a beautiful big girl/young lady!

Carrie - mom to 4 from Korea

Abigail said...

I can't speak for everyone, but I imagine that there are lots of us out there who might really love the opportunity to pitch a dollar or five in the direction of Schuyler having that kind of camp experience.

Anonymous said...

Yeah, I'd like to be able to chip in for a summer camp fund, if that's something you guys would want to do.

BigRed said...

What happened to her friend that also used a BBoW? Or was that the girl that also turned into a frenemy? Sometimes I think it's nicer to have just one or two really, really good friends that will stick with you than multiple shallow relationships that won't last.

Also, I bet when she transitions into middle school and as she becomes more adept at communication she'll meet one or two people to hang with.

Sange said...

Sometimes camps for special-needs children can be declared on state taxes for a partial refund (depending on the state). After they attend, you can ask for the camp's tax ID number.

The Meyer Family said...

She is, indeed, growing up far too quickly, as are my own children. Seems like just the other day, we were looking at the first pictures you posted of that amazing little girl. And here it is, ten years on.

Where did the time go?

Jim (Hank) from CT said...

Hi Rob.

Jim from CT here.

Oh yeah... you're a purple snowflake alright, more like a piss yellow snowflake for obvious reasons.

Your beautiful daughter, on the other, hand has always been "unique in the whole world" to quote the smarty pants doctor.

Yeah, my daughter is unique because of her complications, Schuyler is unique in spite of them. It's a bit different and both she and you are the better for it.

Without parents like you and Julie I shudder to think what Schuyler's life might be like. Some parents (mostly parents of neuro-normal spawn) are committed to doing the minimum with and for their kids because they have already had a hard enough day, or whatever they need to tell themselves to get to the beer and the couch more quickly.

I say this knowing that I am not one of those parents, though I know some, but I also know that I could not have done what you and Julie did for Schuyler.

I hope she never knows how "Mega PowerBall" lucky she got when she picked you guys for parents.

P.S.
The kids were watching Danny Phantom and one of the bad guys in the cartoon was referred to as, "The Enemy of Fun"!

HAHAHAHA... Brought back memories.

Later Bro. Say hi to Jules and Schuyler for me

Anonymous said...

Rob,

You are getting a lot of good suggestions. The other one I would mention would be girl scouts or girl guides groups.

A mom in our community has done this with her daughter. Our syndrome is different in that our kids don't talk and the Big Box of Words is beyond their capabilities. But she is finding that the Girl Guide group accepts her daughter completely and this has led to sleep overs and play dates.

R.

BCC said...

You've got a really amazing and adorable little girl. I'm sorry how much this diagnosis sucks. This world is not fair.

Unknown said...

Came out here before my IEP meeting today to see if there is anything I need to think about and, yes, glad I did. My son uses a dynavox in his 4th grade class and will be transitioning to middle school next year. We are zoned where the administration knows and likes us and lets us do what we want; but my son's class friends who accept him and include him are zoned for a different school (where they don't know us and the administration is reportedly less special ed friendly.) After reading your post, I'm inclined to fight the ugly fight to get to the other school (and prepare for the subsequent fights to stay there.)BTW, Schuyler is so pretty.

Solcat said...

1. I would so chip in if there was a Camp Schuyler Fund.
2. If she wants a pen pal or text pal, Rymer would love to..the only thing is he writes phonetically still. I actually text/IM with him to work on this :)
3. MAKE UP?!!! At 10?!!! That's a NO right?

Robert Hudson said...

No, we let her try it a little. Nothing extreme, but she's figuring out what kind of young woman she wants to be, and make up is part of that.

TammyJammy said...

No two snowflakes are the same, yet look how we stick together (to make a wonderful creation)!
---------------------------
Good job on being a father, role model and posting one of the best blogs I've read in a long time.
Keep it up and all the pieces will fall into place.

Anonymous said...

If you would like to have Schuyler meet an adult mentor with a disability who is successfully employed, I'd be happy to be a mentor for her. Our disabilities are very different, but I think we could have some similar topics of conversations. Growing up with a disability, whether in Texas or North Dakota, whether the disability is visual impairment or neurological, is never easy. Hang in there.

Anonymous said...

Could have written that post myself (sniff, sniff). Our Lucy is a medical mystery...purple snowflake. I like that image a lot. She's 10 1/2 and also has never had a girlfriend to confide in. Breaks my heart more and more lately - she is really starting to feel "the difference" and notice more profoundly how the neighborhood kids treat her. When she was younger, all kids were "quirky", so Lucy fit in somehow. But puberty is setting in and the girls down the street are acting a bit annoyed with Lucy's differences...Sorry, babbling away here. Thanks so much for sharing - I have followed for a long time and admire your bravery and transparency. You are an encouragement to others : )

Anonymous said...

First-wow, Schuyler has grown!

Second: Pen Pals-egads, look where mine got me!...oh yeah that pen pal of mine was you Rob...you should know better than most the benefit of a pen pal.

I think we should continue the tradition to 2nd generation w/her neuro-challenged cousin. He is always harassing me to type to someone.

By the way, things have gotten so bad at the school we are moving next month, so maybe you should contact me since I may not have same contact info by time I get there in June...love ya cuz

Unknown said...

We are just getting to the point that kids notice something is different about my son (he has PMG and just turned 5). Like Schuyler, you don't really notice anything until he opens his mouth (or doesn't at all). Kids will ask him his name and then looked confused when he doesn't answer and I answer for him. The playground is hard enough sometimes, I really don't know how I am going to handle the preteen years!

Caitlin said...

I am sure you have gotten a thousand comments like mine, but I just had to tell you that I checked out your book in the library and it was like staring into a mirror and seeing my family's life reflected back. Our daughter is 3 and is non-verbal. She also can't walk. Although we are starting to see that her receptive language skills are much higher than we thought and that is exciting. We still have no diagnosis. We were relieved/disappointed to get a few more "normal" genetic and metabolic tests back on Friday. Again. I was reading about the day you received your daughter's correct diagnosis today. It's great being reduced to a hysterical mess over breakfast while my daughter's cinnamon toast covered face stares questioningly at her weirdo mom. We moved to Houston almost 2 years ago after we lost our home due to medical debt in sunny Orange County, California. Apparently it isn't the land where all your dreams come true! Who knew?!? So we are fellow Texans. I will look for any events that you may be attending in the area ( \I haven't snooped on your blog long enough to know if you even do anything like that). I just wanted to thank you for writing the way you do about a daughter that you obsessively love (in a good way). It's been comforting to know that my husband and I aren't the only ones who mourned the loss of the life we didn't even know we had imagined for our daughter. I hope that we can one day find an answer like you have, for better or for worse.

Elne Clare said...

I just found your blog and close to tears reading how isolated Schuyler is from her peers. Though I was told by my daughter's speech therapist, that I and my daughters have a language processing disorder, I like Schuyler struggled with trying to talk and be understood up through my years in school back in the '60 and '70.

I know something was different about me, but not why and didn't feel I had any friends until 10th grade, though I had a group in middle and high school that I hung around with. Sad thing is the weeks before I left my elementary school, some of the same kids that teased me, suddenly took to talking to me. They try to make up for the 5 years where I was the odd kid who had to be stupid, due to my speech disorder and being unable to write even the easiest words on our spelling tests. Grammar was also holding back my grades, though my school kept me in the top track, I realized years later. They told me a week before we moved to another town, that they wish they had gotten to know me for who I was earlier.

Now I know the kids that did accept me from 6 grade on were all Nerds and Geeks, who knew I was far smarter then my writing and spelling showed. Art and poetry were the only subjects I ever got A's in until 12 grade when I transfer to another HS just so I could have a better Art teacher. There they put me in my first special class with other very bright students that couldn't write. Suddenly my reading help me excel and I had a math class were the teacher knew what she was doing instead of being hire as an coach. It was the first time that I got a A's and B's in English and Math.

Still there was at least one classmate that thought I was mute, I was so afraid to talk at lunch time. It's taken me years to learn I'm no longer friendless. Far smarter then the kids that often made fun of me and healing the demons that hunted my feeling of being alone in the world.

Schuyler is lucky to have a Parent so willing to fight for her at IEP meetings and with doctors. I still have to help my 26 year old dyslexic daughter with getting the help she needs to get her GED someday.

Sadly today we confirm that my 8 year old grandson has Asperger syndrome. He is struggling to keep focus in class, while he rather spend time doing what he loves best. Playing video games on his laptop and DS. His little sister has been taking speech therapy since she was 2. We now know that she's the 4th generation that needed speech therapy to be understood.

Nancy K. said...

Hi! I just finished reading your book. My 2 year old grandaughter has pmg-the same type that Schuyler has. She is crawling all over, but not walking and has some mild cerebral palsy. She is cute and laughs and understands but can't talk and does some signing. Your book gives us hope for the future! I am a special ed teacher and understand your frustration with some teachers and school officials. I think it is important to really understand where parents are coming from-teachers have kids for a short time, parents are usually much more invested and know what their children are capable of and what they want for them ..although I have had some parents who didn't care too much about their child and that broke my heart. Anyway, thanks so much for writing the book so those of us that come after have someone to pave the way. I will be praying for your lovely Schuyler.