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Mar 21, 2011

Temple Grandin Gives Me Hope

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Seems like anytime I send for an old-fashioned DVD from Netflix, it then sits around our house for weeks and weeks before I ever get around to watching it, even if I was so excited to see it. Just another reason why instant streaming always wins in our house.
But I did finally dig the latest DVD out on Saturday night, and I sat down to watch the HBO movie, Temple Grandin. I roughly knew the story – a biopic about the life of a woman with autism who has gone on to do incredible things both in spite of and because of her different mind – and I was interested in learning more about Temple. I thought it might help me understand my own daughter a little bit more and maybe even help me feel more confident about her future. However, I wasn’t prepared for the emotional gut punch that came with the story.

If you have a child with autism, I highly recommend this movie. With tissues.

If you don’t have a child with autism, I also highly recommend this movie. Possibly with tissues.

The first part that brought tears to my eyes was near the beginning, in a flashback scene where her mother remembers when Temple was four years old and diagnosed with autism. Her mother asked how soon they could start treatment to cure her, and the doctor flatly told her that in these cases they recommended institutionalizing the child for life. Her mother’s reaction – one of confusion and horror – reached right out and grabbed my heart.

I’m thankful that research for autism has come so far since 1960. I can’t imagine being told my child would have no chance at a life outside of an institution. But I shared a similar reaction when the school told us they thought Cordy had autism. Oh sure, I put on a pretty brave stiff-upper-lip about the whole thing when it happened, but I can honestly say now that I was so very, very scared. In those first few days I was faced with an entirely different life plan for Cordy, one where I had to wonder if she’d ever be able to go to college, or have friends, or even live on her own. While it was a complete overreaction, for a short time autism felt like a death sentence for all of my hopes and dreams for my beautiful curly-headed firstborn.

Temple, despite being nonverbal at four years old, wasn’t put in an institution. Her mother worked with her daily, brought in others to teach her as well, and she eventually went to school, then to college, then to graduate school, and she now has her PhD. Her family didn’t give up on her, and they didn’t let her give up either. It was interesting to see how her family worked with her through her quirks and needs in high school and college, but at the same time they still insisted that some things must be done, no matter how difficult. I only wish the film had been longer to show more of how Temple was brought out of her shell as a child.

It was also painful to see how others treated and reacted to her. She was bullied, she was called a freak, and she was an easy target for others. I already know Cordy will face an onslaught of bullying in school, and I don’t know how to protect her. Thankfully she often doesn’t notice if someone teases her, but I know that kids don’t like to be ignored and will drive their point home if she misses it, physically if needed. She has such a gentle soul that believes everyone is good – how will I prepare for the day when that soul is crushed by cruelty and she realizes her rigid definition of humanity doesn’t fit?

The second time I cried was at the end, when Temple attended an autism conference and was asked to speak. Just the full realization that this woman – with autism – has led such a successful life overwhelmed me with happiness and hope. Her different way of thinking led her to design cattle pen systems that are considered some of the most humane ever invented, and over half of the feedlots and slaughterhouses in the US now use her designs.

She wouldn’t have been able to do it without being autistic and seeing the world the way she does. She’s published many articles and a few books on her work with animals, and she’s also written about what it’s like to have autism, how she overcame her challenges, and how she embraces her autism as a part of her. She meets nearly every definition of success.

I still have days when I look at Cordy and wonder what her life will be like. She’s come so incredibly far from that three year old who recited entire episodes of Dora but couldn’t carry on a simple conversation. The kid who had a 20 minute meltdown, trying to bash her head into the floor over and over, because her routine had changed, or the room was too loud, or she had touched fingerpaint.
She’s full of life, she’s outspoken (although she tends to talk way too much), and she’s smart. She still has no grasp of sarcasm, takes everything you say literally (never say you want to kill something in front of her), and is still bothered by certain sensory stimuli. Will she continue improving? Will she be successful?
I don’t know if she’ll go on to college, but I plan to do everything I can to get her ready for it if she wants to. Maybe even if she doesn’t want to – after all, Cordy needs a lot of pushing to face her fears and grow. If I didn’t force her to go outside of her comfort zone, she’d still be unable to deal with a loud room and still drinking only out of sippy cups. I feel like the bad guy when I make her do things she doesn’t want to do, but I really believe she has to conquer those fears if she’s going to realize her full potential.
I have yet to read any of Temple Grandin’s books, but I plan to add them to the top of my priority reading list. I want to know more about her experiences and how she felt about her family and teachers and how they challenged her. I want to better understand her in the hopes of better understanding my own daughter, and perhaps get some tips on how to better reach out to Cordy. I’m considering going to see Temple speak when she’s in Indianapolis in April, too.
So yeah, if you get the chance, add Temple Grandin to your Netflix queue or just buy it outright. And don’t wait as long as I did to watch it.

Full disclosure: Just because it needs to be said, no one contacted me asking me to review this film – I just wanted to watch it. Although the links above do contain my Amazon ID, meaning if you click on the link and buy the DVD, I get a few pennies in return.

Filed Under: Autism, being a mom, Cordy, reviews ·


Feb 21, 2011

The Pioneer Woman, Ice Cream, and a Sick Kid All In One Weekend

By ·

Some weekends are short, and then some fly by so quickly that you barely had time to process everything that happened before you found yourself sitting at your desk at work again.

This weekend was one of the second.

It wasn’t a wholly bad weekend. And it wasn’t a wholly awesome weekend. But somehow it was a combo of both, with no hint of mediocre anywhere to be found.

First, the bad:

Friday started off with a beautiful afternoon and the promise of spending a few hours with my husband before the kids got home from school. That plan vanished when the school called to report Mira had thrown up and we needed to come get her.

Let the Vomit-fest 2011 commence!

Mira was fine the remainder of the day. Ate dinner, was mostly herself, went to bed with no problems. Then at 2:30am I heard her crying and found she had vomited in bed. Stripped & remade the bed, changed her, calmed her down and put her back to bed. 3:30am – lather, rinse, repeat. And then 5:00am, when I was out of sheets for her bed, Aaron took her downstairs to sleep on the couch while I started the laundry and then got a little more sleep.

It’s now Monday, and Mira just got off that couch. Other than going to the bathroom, she didn’t leave that couch for 48 hours. Poor kid seemed better on Saturday morning, but then by mid-day made it clear that even small sips of water couldn’t be kept down. Saturday was nothing more than fitful periods of sleep and vomiting. And like a bad, bad mother, I missed most of it, because I had a full day already planned. (In my defense, Aaron insisted I keep my plans for the day and he’d take care of Mira.)

Sunday morning was difficult, because I had to weigh our options of what to do for Mira. Take her to an urgent care, where they might insist on IVs, blood tests and meds that would leave us in major debt thanks to no health insurance, or keep her at home and take the risk that she might not get better on her own? Money is no factor if she genuinely needs help, but I’ve been through my share of stomach bugs to know that many times you just have to wait them out. And, well, I’m a nurse – I know what the danger signs of dehydration are and when we can’t wait any longer.

So we waited. I stroked her hair as she slept with her head in my lap, and I waited for her to guide me towards which direction I should take. And by Sunday afternoon she was keeping down small sips of Pedialyte and behaving more like herself. By Sunday evening she was asking for food, although we kept to the Pedialyte regimen. And then she slept through the night with no more vomiting. Whew.

Two things. One: I never want to repeat that again. Two: why do kids always seem to get really sick on the weekend, when the doctor isn’t in her office?

And then the awesome:

Momo had tweeted me earlier in the week that Ree Drummond, The Pioneer Woman, was coming to town for her book signing, and she was organizing plans for dinner afterward. We know a lot of the same people, but I’ve never had the privilege of talking with Ree, so I was thrilled to be invited along.

I was also secretly terrified that she’d hate me, because she’s all…uh…domestic, and I’m, well, not. I burn water, people.

But the truth is, Ree is funny, smart, and so very easy to talk with. Not once did I feel uncomfortable around her. (OK, maybe a little jealous of her tremendous flexibility – she can get her leg behind her head!) She blended right in with the local gang as we talked, laughed and drank wine late into the night.

Oh yeah, we’d had some wine by this point…

We all had a fantastic dinner at Northstar Cafe (omg, try their veggie burger!), followed by dessert next door at Columbus’s own Jeni’s Splendid Ice Creams, with a personal tour by Jeni herself.

Ree is in awe of the ice cream goodness. I’m in the back about to pass out from so many yummy choices.

Side note: I am completely in love with Jeni’s ice cream, and was crazy proud that we could introduce Ree to our hometown best. Not only is it delicious, it’s all-natural, with many ingredients locally-sourced (including milk and cream from Snowville Creamery), and every flavor is safe for Cordy to eat. She’s not just limited to vanilla at Jeni’s, even if she prefers vanilla.

Columbus locals, if you haven’t had Jeni’s yet, you are hereby ordered to report to your nearest Jeni’s location and eat ice cream. Meyer Lemon Yogurt is my favorite, but if you hurry you might get to try Ylang Ylang Honeycomb before the season passes.

Dinner and ice cream and hanging out with some amazing women made it one of the best nights I’ve had in a long time. It all went by too quickly, and I already miss those conversations and all of that laughter. I’m glad to have met Ree, and thankful to her for giving us all a reason to gather and share an awesome evening together.

Love.
Filed Under: being a mom, me me me, Mira, plague · Tagged:


Dec 23, 2010

A Fair and Balanced Christmas

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I thought I had most of the Christmas shopping done long before today. But then when I paused for a moment to do a quick recap of the gifts I have for my two cherubs to unwrap on Christmas morning, I realized I had made a grave error.

Mira has over twice as many gifts as Cordy.

It’s not like I intentionally tried to stiff my older child. Mira is just far easier to shop for, thanks to being very outspoken about what she likes. I know that if I find anything involving Thomas the Train, polar bears, or the color pink, she will squeal with joy and proclaim it the Best Gift Ever.

(Until she opens the next item that fits one or more of those categories, where she will yet again declare it the Best Gift Ever. She never leaves a gift giver disappointed by her reaction.)

Cordy, on the other hand, is a little more difficult. She wants a blue bunny. And maybe a superhero sticker book. Her requests are very specific, and not always items that can be obtained. Guess wrong when presenting her with a gift and you’ll be met with the silence of indifference as she sets it aside and never glances at it again.

So it was an honest oversight that I picked up significantly more gifts for Mira than Cordy. Which means I get to join the crowds today to find at least one more gift for Cordy.

Sure, I could hold back a few items for Mira, but if I did that it would be holding back all of the toys/games, because the polar bear clothing can’t wait until her birthday in May, when it will no longer be winter and she’ll likely be near the end of this clothing size. And even though I know she’ll love the clothing, I can’t make her open only clothing from Santa.

Thankfully, both of my girls don’t have expensive tastes, so I’ll only need to find a good book or an interesting small toy to make up the difference. Sometimes the least expensive item is often Cordy’s favorite. But they’re both old enough now to notice if one has significantly more presents than the other, so I have to at least make sure the gift load is balanced.

My mom was lucky – she never had to deal with the issue of gift equalization. I was an only child, making Christmas an easy task for her – if Santa brought me only one gift, I had no one else to compare it with. But possibly because I grew up as an only child, it’s also not a topic in the front of my mind when buying gifts for my children.

(For the record – I’m not saying I wish I had only one child. They just don’t cover this in the hospital when you give birth to your second child.)

I suppose this will be good training for the years to come, because while they will only notice the number of packages at the moment, I’m sure in the future I’ll have to dodge the “You spent more on her than me!” teenager whine.

And that will be the day I give them equal gift cards and let them pick out what they want.

Filed Under: being a mom, Cordy, family time, holidays, Mira, sisterhood ·


Sep 13, 2010

Sickness, Dollars and Sense

By ·

Saturday night was a long night. I trudged up to bed around midnight, my body and brain fighting to figure out if it was really nearly lunchtime or bedtime. (Third shift work schedules really screw with your biorhythms.) No sooner had my eyes closed and I was on the verge of sleep, I heard crying coming from Mira’s room. I went in and she was clutching her belly, crying “My bewwy huwts!!!”

Figuring it was probably just gas, I rubbed her belly and back, but she then asked if she could come into my room. Aaron had fallen asleep on the couch, so I agreed and brought her in. She lay in bed with me for about ten minutes before deciding she felt better and went back to her room. I again tried to focus on the inside of my eyelids and aimed for sleep.

An hour later, a repeat performance. This time I got her up and had her try using the potty. (Did I mention we’re potty training? No? Well, we’re POTTY TRAINING! A whole year and a half earlier than Cordy, thank goodness!) Again it didn’t seem to help much, and she eventually went back to bed.

Two hours later, the crying startled me awake. This time it sounded more urgent. I went into her room to see her sitting in a corner of her bed, pointing to the center and saying, “I made a mess! I sowwy! I soooo sowwy!” As my eyes adjusted to the light, and my nose adjusted to the assault on it, I realized she had vomited and was covered in it herself. Poor kid – she’s sick and all she can do is think I’m mad at her for making a mess. You’d think I was a clean freak.

I carefully lifted her out of bed, making sure to avoid her stuffed pink polar bear (which she made sure to tell me that she was careful to NOT get vomit on her prized stuffed animal!), stripped her down and put her in the bath. While she soaked, I cleaned up the mess, remade her bed, and got the washer started. Then I cleaned her up, got her dressed and put her to bed. Mira seemed to feel better after that, and I hoped it was over.

Sunday was a typical day for her. She ate just fine, even though we were cautious at first, she played, and she continued to say, “My bewwy doesn’t huwt now!” Sure, I was exhausted from barely sleeping all night, but she seemed better, so I couldn’t complain too much. It was probably just a virus passing through quickly.

Then Sunday night, right at bedtime, it started again: “My bewwy reawwy hurwts!” At this point, I thought Mira was faking it, having figured out yet another way to stall at bedtime and get some extra attention. Aaron – being better slept than me and therefore in a more generous mood – let her rest on the couch and she promptly fell asleep. Faker, I decided.

Aaron carried her back to bed, and I relaxed in my chair to enjoy a little guilty pleasure I call the MTV VMA’s before I had to go to work. But no sooner than Justin Bieber jumped up on stage, the wailing voice of a little girl could be heard from upstairs. (Yeah, Mira, I’m more of a Lady Gaga fan, too.) Aaron went to check on her and soon came downstairs with a pathetic little barnacle clinging to him. She was again crying that her belly hurt.

Aaron tried to put her on the couch again, but this time she didn’t fall asleep. She tossed and turned and wiggled, occasionally wailing in pain. At this point, I was starting to think it wasn’t an act. But it made no sense – how could she be so sick the night before, then perfect all day long, and now very sick again? That little voice of motherly worry started to build in my mind.

I barely saw Taylor Swift’s performance, because by that point the wailing had reached a fever pitch. Aaron tried to pull Mira into his lap on the floor, but she pushed him away and stumbled over to where I was sitting in the recliner. No longer the stoic doubter, I accepted her into my lap and let her curl herself into me, even knowing I only had five minutes or so until I had to leave for work. She continued to cry, and I asked her to show me where her belly hurt. She placed a chubby hand over her entire belly-button area.

I gently pushed on her belly, trying to remember what to feel for in a three year old, but my nursing skills were falling short. She wailed as I touched her abdomen, constantly shifting around in an attempt to find some relief from whatever was hurting her.

In those moments, as I tried to distract her by pointing out Lady Gaga was on stage accepting an award, real worry invaded my mind. What if this wasn’t just a bug? What if she was really sick?

We don’t have health insurance at the moment. My job is a contractor position and Aaron was laid off in May. My agency’s health plan was nearly half of my salary for a $4000 deductible, and COBRA cost even more. I make too much to be covered on any state insurance plan for children, and the private market? Yeah, well, let’s just say they don’t want to cover our family. I don’t even have paid sick time. If I need to miss a day, I don’t get paid for it. We are the ones “stuck in the middle” making too much to qualify for any help and too little to not worry about the costs.

So in that moment, as I became my own personal WebMD and pondered if Mira had a blockage or if her appendix might burst at any moment, I was also forced to calculate in my head if it was worth taking her to the hospital if she didn’t get better. At what point would the risks outweigh the hefty financial hit we’d face? Just the ER charge alone would be crippling, without even considering costs of any tests or x-rays.

At that point, Mira’s wails took on a new pitch, drowning out the TV entirely, and as I clutched her tight, with Aaron kneeling next to the chair and rubbing her back, I felt the tears in my eyes. Her health was coming down to money. I felt like I was being forced to decide how sick she had to be before we could risk going broke. And I wanted to scream right along with her, wail at how idiotic and unfair our health insurance system is, and sob that any parent should be forced to think like this, to feel this helpless in the shadow of illness and dollar bills balancing on an enormous scale.

And right then Mira vomited all over me. Twice. The silence was shocking to us all.

That sweet little girl then took one look at me, completely covered in more vomit than I thought possible to come out of such a small person, and said, “Mommy, I so sowwy I got you messy. You still wuv me?”

For the moment all of my fears and worries were gone as I stroked her hair and assured her that of course I still loved her and everything was OK. She still didn’t feel well, but the crying had stopped as she was suddenly more concerned about me. (And seriously, I’m really not obsessed with being neat. Sure, I don’t like being covered in vomit, but I doubt anyone does.)

Mira still isn’t well, but I’m less worried about appendicitis now and back to my original theory that it’s a virus. And so we continue to wait it out, hoping she gets better soon and we can avoid a costly trip to the doctor or the ER. I’m still mad at the system, though. Angry that we can’t have affordable health insurance because I chose to take a job I love over something I wouldn’t enjoy as much, because Aaron is unemployed, because we have a host of pre-existing conditions that would deny us private insurance.

We’re average Americans. We have a house, we make a middle-class income, we pay our taxes, and we’re trying to get ahead to provide for our daughters. But we’re also forced to worry that the next stomachache that comes along might be more serious. That stomachache could bankrupt us, could take away that house we call home, and that chance at getting ahead we so desperately want and work hard towards. I know we’re not the only ones in this situation, either.

I’m not an economist (nor do I play one on TV), and I didn’t start this post with the intention of going all ranty, but as a mother I can’t understand why anyone would think that basic universal health care is wrong. At this point I’d even be willing to settle for universal children’s health care. No mother wants a price to be placed on her child’s health – so why would you then choose to put a price on the health of someone else’s child?

Maybe the world would be a better place if mothers were running it.

Filed Under: being a mom, big issues, Mira, money · Tagged:


Aug 16, 2010

Heaven Help Us When She’s Sixteen. Or Four.

By ·

You’d think that with a second child I’d feel like less of a novice mother. I’ve been through it all once, so the second time through is just a refresher, only this time I know what mistakes not to make, right?

Right?

Ha.

Miranda is a child so different from Cordelia that I often find myself wondering if Cordy is really mine and I imagined the whole idea of raising her from a baby. Because Mira makes me doubt all of my parenting knowledge on a daily – hourly – basis.

When Cordy was three years old my primary concern was keeping her from completely losing it and slipping into a violent meltdown. Oh sure, I also had to deal with feeding her because she wouldn’t use a spoon, and changing diapers because she had no interest in potty training, but the goal of each day was to get to the end of it without having to restrain her so she didn’t crack her head open from banging it into the floor. The biggest fight we had was keeping the TV on Noggin versus some non-kiddie-crack TV.

Sounds tough, right? I had no idea how easy I had it.

Because with Mira, three years old is totally different. Now I have to deal with refusing to get dressed because she wanted to wear the PINK shirt, not the blue one. And attitude because I dared help her take off her pull-up when she could clearly do it all herself. And refusing to eat her yogurt because I had the nerve to try to help her with her spoon. And dinnertime cries of, “No! I wan appasace not yogut! I change mah miiiiiind!”

And making me go back into the house to find her damn sunglasses, because the sun is in her darling eyes and we wouldn’t want her to go blind, right? And insisting on buying only PINK clothing when we go clothes shopping, a task that she insists on joining me for and during which I endure the semi-incoherent Mira babble of how those leggings match that dress and how she LOOOOVES those PINK shoes.

It’s exhausting.

But now we’re truly heading into uncharted waters, as she’s decided to go exploring her surroundings in ways that Cordy never attempted, either because she wasn’t interested or because she didn’t notice.

Two weeks ago I noticed Mira’s Thomas the Tank Engine pajama top had a couple of holes in it. When I asked her what happened to her shirt, she said, “Da kitdie did it.” It seemed odd that a claw hooked in a shirt would cause so much damage, but I shrugged and chalked it up to cheap manufacturing.

Then a few days later I found Aaron’s beard trimming scissors on the floor of the bathroom. And new holes in her shirt. It would seem the cats had somehow developed opposable thumbs and exacted their revenge on Mira – who never lets them into her room – by sneaking in at night and cutting holes in her shirt with the scissors.

Or Mira just didn’t want to tell us she experimented with scissors. I’m just thankful she didn’t cut her hair.

And then today, Aaron came downstairs with a puzzled look on his face and asked, “OK, which little girl has been using my toothpaste?”

Cordy immediately answered, “Not me!” and Mira copied her with the same response, trying her best to look like she didn’t know what he was talking about.

“Well, one of you has been into it, because you forgot to put the cap back on. Now who did it?”

Cordy again proclaimed her innocence, and Mira then looked at the ground, hands behind her back as she kicked at nothing in front of her and quietly replied, “I di-it.”

“Why were you playing with the toothpaste?”

“I bwush my teeh,” she replied, as if to say duh, what did you think I’d do with it? Only she had no toothbrush in that bathroom. It soon came out that she was sneaking into the bathroom in the early morning and putting toothpaste on her finger and pretending to brush her teeth. You know, since we locked up the scissors already.

Then this afternoon, I walked into the living room and sat down, and Mira quickly climbed into my lap. I immediately smelled something odd, but couldn’t quite place it. I knew it was coming from Mira, but couldn’t figure out what the strong, chemical-like smell was.

And then I saw the travel size bottle of Downy Wrinkle Releaser on the floor. The scent suddenly had a name.

“What did you do?” I demanded to know.

Mira immediately started her – now routine – answer of, “I sowwy, I sowwy, I sowwy!” She’s learned to begin with a flurry of sad-voiced apologies and hope her cuteness will keep her out of time out. I then discovered through interrogation that she thought the small spray bottle was just like my “soap” (aka the spray hand sanitizer I often use) and had decided to spray herself with it during the 5 minutes no one was looking. At least her dress no longer had any wrinkles in it.

The worst part of all of this is that we had no idea Mira could reach or would even be interested in this stuff, and how she gets into it without us seeing her. She’s like a ninja. The bathroom items were far back on the counter, beyond her reach and likely beyond her site without a step stool. The wrinkle releaser was in a drawer. Now I’m forced to look at everything and wonder how long until she figures out the childproof lock on the cabinets under the sink? Would she want the pack of matches next to the candle on the fireplace mantle? Could two step stools stacked on each other be enough to reach that high? What if she got a stick to knock them down while balancing on two step stools?  

Maybe I baby-proofed the house better with Cordy? I don’t remember it being any different than now. Or maybe I just had no idea what to expect when raising a typical child? When your first child has autism, you come to accept her quirks and different path of development as your own personal norm. So then a neurotypical second child comes along and suddenly you’re not feeling so smug when your friend complains about her child giving her dolls a haircut and coloring on the walls with crayons, because your second child is now decorating her skin with permanent marker and trying to shave the cat with your razor.

I don’t remember this chapter in the parenting handbooks.

“I gonna gwow up biiig wike mommy an daddy an go to work as a supahewo and dwive a biiiig PINK car!”
– actual life/career planning quote from Mira 
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Filed Under: being a mom, daily life, family time, growing up, kid logic, Mira · Tagged: