Seeker

Most of the folks I follow on twitter are fellow autism parents (and yes, okay, celebrities and celebrity gossipers). Anyway, there has been a lot of talk lately about how some of them are so, so grateful that Christmas is over, because they can finally take everything down and peel their spectrum kid off the ceiling. I don't take my decorations down until January 1st, and it's always a mix of relief that my house is back to normal and post-Christmas what-do-we-have-to-look-forward-to gloom. Jonah totally rocked this Christmas, and was thrilled by every little bit. He insisted we take the long way home every day during the season, and pointed at every (EVERY) decorated house, squealing and screaming, "Yikes!" (note: this is a hold-over from Halloween decorations, but the point is... enthusiasm). Lights, carols, loud toys from Santa, parties and busy schedules- he was into all of it. Because, in the world of autism, we have this one advantage. Jonah is a seeker.

Like most kids on the spectrum, Jonah has sensory processing disorder, and "seeker" refers to sensory-seeking, as opposed to sensory-avoiding. For avoiders, Christmas is a sensory nightmare. Everything is too loud, too bright, too much. As a parent of two neurotypical children, and being a full-blown Christmas wackadoo myself, having to avoid Christmas would certainly suck. And this is how it is. Yes, my kid is autistic, but I'm SO grateful he's a seeker. You sort through the bullshit and find the little gems to be grateful for. Times I'm less grateful for his seeking might include when he's grinding his skull against mine, or grinding his teeth down to dust, or launching himself at me or his sisters, but I can put up twinkle lights, so I'll take it.

Segue: Okay, so I keep calling Jonah a seeker, right? I've decided I'm going to write the next Harry Potter/Twilight-type series of young adult books, and the hero will be a Seeker. It will turn out that autism is actually one step further up the evolutionary ladder, or a mutation that confers awesome powers in an X-men sort of way. Seriously, it's not so far-fetched. High-functioning autistics are sometimes uniquely gifted at problem solving or code breaking (or anything, really- many savants are autistic). My own seeker taught himself to read (hyperlexia) is fairly masterful for his age at puzzles and patterns, and Lord knows what else he can do or understand. I CANNOT WAIT for his verbal communication to catch up, so I can get a better grip on what's going on in there. Anyway, the Seeker will be a blonde scruffy-haired teenager (he still loathes haircuts, evidently) who basically kicks ass and solves the world's problems, or whatever.

Okay, I don't have the details worked out yet, but what do you think? I'm thinking multi-book deal, movie deal, and inevitable (sensory-friendly) theme park. I mean, I'm not living in my car like JK Rowling, but I could use some extra cash. Honestly, the middle-class-to-riches story just doesn't get enough cred.
Especially when our (expensive) insurance does not cover the therapies our special-needs kids deserve.

ANYWAY... I hope that you all found a way to have the happiest holiday possible, and that you found joy in just being with each other. Here's to 2012 and getting back to school and highly structured environments!

Oh, the humanity

Okay, I talk about poop too much. I know that about myself. But I cannot take this (literal) shit anymore. And yes, I know that I sort of started the whole thing. In my very brief career as a nurse before Elena (my oldest) was born, I chose to work the oncology unit. Listen up, nursing hopefuls: If you don't care to handle poop, oncology is not for you. Honestly, a good portion of your day will be spent helping patients to either start or stop pooping. Even when there are such grave matters at hand, people care a great deal about their bowels. I'm telling you.

I remember one patient in particular, who had not pooped for well over a week. We started our fun-filled journey with a garden-variety fleet enema. We mobilized, drank prune juice, took stool softeners, and ended the day with the always-sexy hot oil enema. Side note: Even if you have just met that morning, if you give a grown man two enemas in one day, you are now besties, and are required to invite each other to your kids' baptisms and whatnot. It's, like, the rule. Anyway, I was in the hallway charting, and he called me into his bathroom to behold the fruits of his labor. A chocolate morsel would be a good reference point. We just each threw an arm around the other's shoulder, and laughed until tears ran down our faces. Poop will put you in touch with your humanity, folks.

So anyway, Elena was born, and other than the garden variety up-the-back-down-the-legs fun that all parents enjoy, we had no problems. Then, I had twins. Although initially on board with the idea of new babies, Elena went on a nine day poop strike when they were born. There were tears of joy all around when she finally fired one off. But the struggle continued. She entered her avant garde poop art phase, wherein she would sneak the contents of her diaper into the babies' co-sleeper next to my bed, or else use it much like a crayon on various household surfaces. It was a joyful time for all of us. But, things settled down. Three babies in diapers is a lot, but we made it.

Now, Elena is six years old and Gabby and Jonah are almost four. One would think that these people are old enough to handle their own toileting, and yet, they are not. I am still master of ceremonies for all potty events, and I am SO ready to retire. Okay, Jonah is delayed in his potty training because of his SPD. No problem. BUT, he was doing so awesome, making it through whole days without accidents, etc. Over Christmas break, we decided to try big boy panties (briefs? whatever) and naturally, he got a stomach bug that day and decided that underwear is foul and disgusting (in this case, he was not wrong).

Gabby, much like her sister, has decided that she just doesn't want to poop anymore, and spends a great deal of her time (and my patience) in the pursuit of prevention. That girl has buns of steel, no joke. So, tonight as I was taking Jonah out of the tub and drying him off, I called to Gabby to check on her. No answer, so I ran to the tub, and she was standing there, you know, squeezing. Red-faced and panting, trying to prevent the inevitable. So, I called to Elena to ask her to help Jonah into his pull-up, while I put Gabby on the potty. Gabby was totally wet and sliding all over the seat, and still trying to keep her knees together, and I'm trying to push them apart, and she's wide-eyed and fearful because a) she doesn't want to poop and b) she doesn't want to fall in and die in a toileting accident like Elvis. Finally, I get her legs open, and it's like I'm working the labor/delivery unit. "Push-push-push! You can do it! Almost there! Puuuuuuuush!" Meanwhile, rather than helping Jonah to step into his pull-up, Elena has opened the tabs on the diaper and is trying to get this four-year-old to lay down like a baby, so she can diaper him, which he finds hilarious and infuriating, equally. Finally, Gabby and I succeed in our efforts, and I throw her back in the tub, and get Jonah into his diaper. Now, naturally, the product of our labors will not flush. And why would it? The physical properties of this specimen (mass, density, dimensions) simply forbid it. I'm frustrated, and trying to get the thing to flush (repeatedly) while muttering obscenities under my breath. Sensing a moment of drama, Gabby puts her head in her hands and laments, "What have I done? What. Have. I. Done?"

Indeed.

This is my life, y'all. I wouldn't trade it, but I wouldn't say no to a vacation, either.

Thanksgiving

Last year was our first year for Walk Now for Autism Speaks. I remember setting up the donation page for Team Wonderboy, and when I set the fund-raising goal at $1500, I had to check myself. I thought- Okay, crazy. People are not going to care about this just because it's important to me. I re-set the goal at $150, which was blown out of the water almost immediately. My beautiful family and friends donated over $2,000 and it took my breath away. I know that autism is common enough that most of us know someone affected by it, but for me, I felt that all of you were supporting my Jonah, lifting him up and cheering him on.

This year was no different, and again, I am overwhelmed by the kindness and generosity you all have shown. I can tell you, these kids are so worth it. More than that, when they get help early, it makes all the difference, so thank you, thank you, thank you for your help.

Team Wonderboy 2011:

John Hooks
Mary Hooks
Katie Hooks
Weldon & Glenna Ferrell
The Banister Family
Otis Rhodes
The Davila Family
The Smith Family
The Moffett Family
Sarah Mitchell
Shauna Spear
Aaron Keffeler
Lindsay Scarborough



A special thank-you and sad farewell to Steve Jobs. You have changed the world for all of us, and for the autism community in particular. You gave a voice to so many locked in silence, and gave so many autistic children a new way to learn. You will be missed.

Enough

My friend Bea and her family are struggling so hard right now. Her son was born with a serious congenital problem, and he's already had the first of many surgeries and been hospitalized several times. I remember the day he was born, and I called Corbin, excited to tell him the name and measurements and all of that first day stuff. Later, I came into the room with tears in my eyes, and said, "Something is wrong with Bea's baby. He has surgery tomorrow", and Corbin just sat back in his chair, closed his eyes and said, "Come ON". I knew just what he meant. It seems lately, nothing comes easy.

About a year ago, Jonah and my friend Lisa's son got their diagnoses around the same time. Jonah was diagnosed with autism, and Lisa's son was diagnosed with a malignant brain tumor. She had had trouble with infertility, lost twins at 20 weeks, and finally had a beautiful family of four. And then this. It put our diagnosis into sharp perspective. We might be fighting for Jonah's education, for his happiness, but we were not fighting for his life. Lisa's son is finished with treatment now, and has passed the last two screenings without incident, but really, will his parents every sleep easy again?

My friend Ashley finally brought her babies home from Ethiopia a few weeks ago, after trudging through six years of infertility hell. I can't tell you how happy it makes me to see such joy on her face, but I know that after what she's been through, she'll carry a stone in her heart forever, no matter how much love builds around it.

Honestly, I'm so grateful for the blessings in my life. In many ways, I have had things pretty easy. I never had trouble conceiving, my children are all physically healthy, and Jonah is learning and improving every day. But. Lately, it is so hard. Everything feels like a struggle. Each time I change Jonah's diaper, he either fights me with all his strength, or runs, giggling (and naked) around the kitchen island. Note: my island is about 9 feet long and 5 feet wide, so I can't just grab him (and he knows it). It' sort of funny, but not. I do have to get kids to school on time, and when everything is a fight or a chase, it's just exhausting. And absolutely everything can be this way: meals, bath time, getting dressed, getting into car seats, going to bed, getting into the building at school, grocery shopping, therapy appointments, everything. He screams for his iPad, then immediately starts screaming in frustration. If he hurts himself, or gets too frustrated, his response is to lash out at one of the girls, hitting and kicking. It's relentless. Relentless.

The real issue for me is that there is no end in sight, not even any break. Maybe Jonah will improve enough with his therapies to make it through mainstream school without incident. But, maybe his aggression will worsen, and get us kicked out. Maybe, when he's a teenager, and strong, he will be a physical danger to all of us. Maybe he will never go to college or be married or have children or be happy. Or maybe he will do all of those things, and I am worrying for nothing as usual. The maybes keep me up at night, break me down, make my blood run cold.

I guess I just want it to be okay to sometimes say- this is so, so hard. It's too much. It's unfair and it sucks, and I wish things were different. When my mother was going through treatment for breast cancer, absolutely everyone told her how tough she was, what a trooper she was, how impressively she was handling everything. It was true, but eventually, she did get sick of hearing it. She was sick, and she just wanted this terrible thing to be over. She didn't want to be a "rock" or a "tough old broad". She wanted this bad thing never to have happened, and what's wrong with that?

There's this pressure to feel constantly inspired and motivated and grateful. To feel the grace, and learn the lessons God has for us, and you know what? I do feel that, nearly all the time. But it can be heavy load for all of us, each in our own way, and sometimes I just want to say- enough. I need five minutes or five hours or five days to just cry and be angry, and I need that to be okay.

School starts next week. All three of my kids are on different schedules, but there are tiny windows (two hours on Tuesday, and two on Thursday) when they are all at school at the same time. Four hours a week. All to myself. Chances are, I will spend those hours cleaning or grocery shopping, but it's four hours of possibility. Rest and respite. For now, it's enough.

For Greg

When I was in high school, my friend Greg gave me the nickname "dream-squasher". I'm sorry to say, it was apt. Many of my friends had aspirations for careers in theater and other arts, and my constant refrain was, "Yeah, you might wanna back that up with a business degree or something". To be fair, my sister had just come back from New York City Ballet, her career already over by the age of 20. It just made me sick to think of all the years of work and all the heart she put into that, and it was already gone. I just wanted everyone to play it safe, to set their sights on the middle, which I reasoned would give them a better chance at success.

Then, I had kids.

I mean, where is the fun in keeping your expectations low? What's the worst-case scenario? You spend your life in the pursuit of something you love, whether you are "successful" at it or not. What better chance do any of us have for happiness? I can tell you that I will be cheering at the top of my lungs for my kids, whatever they choose to pursue. My wish is for them to have the biggest dreams possible, and not to be held back by doubt.

I'm glad to say that my friends did not take my (terrible) advice. They are all quite successfully pursuing their dreams (Emmys and Golden Globes come to mind, Mr. Parsons), and Greg is a very well-loved and hugely successful theater director at a high school near Houston. It must be thrilling for him to know that he is changing those kids' lives and giving them such a unique experience. Really, I'm not sure I know anyone with so much imagination, and he is starting those kids on their way with such a gift.

A few days ago, I posted a rant on Facebook about name-calling/discrimination against autistic kids. Greg wrote, "Some of my favorite and most brilliant students have been artistic/autistic!" And I just thought... huh. He has autistic kids in his theater? It never occurred to me that Jonah might pursue something like that. I mean, the whole empathy/emotion thing can be a problem for kids on the spectrum, so it just never crossed my mind. And shame on me. Jonah is the sweetest, warmest, funniest kid, and who knows what he might do? God willing, I hope he'll find fantastic teachers like Greg who will support him, encourage him, and lift him up.

As a parent, I worry nearly constantly about my kids. About accidents, illness, bullying, keeping them off of drugs (I know, they're 6, 3 and 3, but still...). You know- pretty much everything. But, I'm glad to say that my overriding emotion these days is hope. I just hope and hope and hope for them. For everything they wish, everything they can imagine.

"Ah, but man's reach should exceed his grasp, or what's a heaven for?"
-Robert Browning

Twelve

Things I like about my husband:

He still wakes up early with the kids every other morning and gives them their bath every other night. It's my understanding that many dads don't do this, and I can tell you- it rocks.

His default emotion is joyful/content.

He is boyishly charming in his enthusiasm for Texas Longhorn football, and I get to cash in on that with season tickets and trips to Dallas for TX/OU.

He'd rather read than watch TV (which gives me free reign over the DVR).

He does nothing to excess.

He takes care of lawn and car maintenance, which I hate doing myself (Okay, I have never actually mowed a lawn, but I feel certain that it sucks).

Everywhere that he has worked, patients bring him gifts for holidays, and take the time to tell me how well he takes care of them. He is kind and generous with people.

He's really tall, and can reach things on the top shelf for me.

If he "can't think of anything else", he gives spa packages at Lake Austin as gifts.

He restricts his commentary to rolling his eyes when I drive over curbs (to see the value in this, you should know that I do it CONSTANTLY).

Okay, there's a lot more I like about him, but you get the idea. I ended up with a better partner than I could have ever imagined for myself, and certainly a better man than I deserve. We started dating only a few weeks before he graduated, and only a few weeks after he ended a long-term relationship. I felt sure that I had missed my chance with him, and it makes me panic to think of all that I would have missed. That single blessing has led to pretty much all other blessings in my life, and I can never say how grateful I am. Corbin, you are the best thing that ever happened to me. Thank you for every day we've had together. Here's to the next twelve and the next and the next. Happy Anniversary.

Give

Do it for her

I met Ashley in nursing school, and we were fast friends. Really, the only way I made it through pharmacology was gossiping and sharing the daily crossword with her, (and then later having to cram intensely for the two hours prior to an exam, which we all know is the very best way to learn). In this picture, me and Ashley (she's on the right) and our friend Bea are celebrating graduation, just weeks before Elena was born. This is just around the time Ashley and Lee began trying for a family. Elena is just finishing kindergarten, but Ashley's arms are still empty. The past six years have been filled with tears, hormones, costly procedures, and ultimately, five failed IVF procedures. Five. Now, at long last, she has met her babies and they will hopefully come home with her very soon. In one way, at least, she has been lucky. Her babies are doing well in their orphanage, despite the crushing conditions. Many other babies are not as lucky, and they need our help.



Do it for them

Ashley and her husband Lee are just what you might picture when you think about ideal parents. They volunteer with the homeless, and participate in the Big Brothers/Big Sisters program; they are active in their church; they are well-educated and able to provide for children; Lee is a children's musician; they are fun-loving, kind, and generous. If we all had to have such rigorous criteria to be parents, the world would be a nicer place. Really though, what it all comes down to is this: They desperately want to be parents, and their babies need and deserve to be loved and cared for. The orphanage is the bridge between the two parts of this family, and they are struggling mightily. (They took this picture in NYC just minutes before finding out that they were matched with their babies. Despite everything they went through, they believed.)



Do it for the babies

There are more than 4 million orphans in Ethiopia. The total population of Austin is less than 2 million. Really, I just can't wrap my mind around that. These are human beings, children, no different from my children or yours, and no less deserving of a family. Many of them are sick and have needs that will never be met. It feels hopeless, but it is possible to help. Even the smallest contribution matters. Diapers. Formula that won't have to be diluted to stretch for every child who needs it. A clean place to sleep. You'd be amazed by what you could provide with so little.

Do it for you

You always hear, "Give 'til it hurts", but I say, "Give 'til it feels good". You'll never regret it. No matter how much or how little you can spare, it makes a difference in their lives and in yours. There are so many good reasons to give these days, and so many causes that need our help. It can be completely overwhelming. I just do what I guess we all do- choose the things that move me most, and do something. I hope that you will be moved to help these families find each other, and to share your blessings.

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