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Apr 4, 2012

Autism Awareness and Defining the Child

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I knew that Monday was autism awareness day, and I even briefly considered writing something specifically for it. But then life and work got in the way, along with my own stubbornness at feeling obligated to write about a topic just because it’s a designated day and others are doing it. (Yes, I’m rebellious towards the dumbest things.)

The truth is, I didn’t really know what to say. My family has a child with autism. One day of awareness, wrapped in a month of awareness is awesome, but around here it’s an everyday thing.

Way back when I started this blog, I had no idea Cordy would be diagnosed with autism. I knew what it was, vaguely, but had little personal experience. Our autism indoctrination was then intense from ages three to five, a time when we wondered what the future might hold for our daughter, and for us. It was a frightening period as we witnessed just how different our child was from others, and endured several difficult therapies to give her the best shot at a “normal” life.

Now? She’s in first grade, completely mainstreamed. She reads at a third grade level and does well in her other subjects. Her transition was a little rough at the start of the year, but her teacher reports that her behavior is no worse than other kids in the class. To be honest, her behavior is better than some of the other kids – she often comes home with awards for no behavior issues for the week. Yes, she’s quirky and doesn’t understand a lot of social cues, but she can function in a classroom and (mostly) in public.

People still occasionally question if Cordy really has autism. While it does frustrate me to hear it (do they think we’re making it up?) I’m also learning to see their opinions as a positive statement. Cordy has made so much progress that a quick meeting might convince you that she’s a typical kid. Of course, the downside of this is that when her more unpleasant quirks do show themselves, the judgment from strangers and acquaintances doesn’t take into account that she has autism. I guess that’s where autism awareness education comes into play.

I’m rarely considered among “special needs” bloggers, because Cordy’s autism is only one small part of my story. But even if I’m not on the lists, I still consider myself a special needs blogger and draw much of my own strength from reading the heartfelt posts of others. (Indeed, they’re the ones who held me up when I felt like I couldn’t handle it all early on.) Cordy’s autism may not always be in the front of my mind, but it’s a part of who she is and influences all aspects of our lives, even if it isn’t routinely discussed.

Do I want people to know that Cordy has autism? Sure, as long as they don’t define her only by that aspect. She’s an avid reader and can rarely be found without a book in her hand. She loves soccer. When she’s happy, she skips and bounces along like Tigger. She can bring a smile to nearly anyone’s face. Depending on the day, she wants to be a storyteller, a cook, a seamstress, a rock star, a vet, or a journalist when she grows up. But she also insists she wants to be a mommy, too.

So yes, I think we should do our part to educate others about autism, but I believe in looking at it from a whole-person approach. This is Cordy, she has autism, but she also has a lot of really cool interests and thoughts. Her quirky collection of behaviors just happen to have a name, while the rest of us have yet to figure out what to call our quirks. (And oh, we’re a quirky family, have no doubt!) Her challenges might be more than the average person, and we’ll continue to do anything she needs to help her overcome or at least cope with those challenges, but she also has a wealth of talents that some could only hope to have.

In total: she’s just Cordy, autism and all.

This is how she always wants to pose for photos – as a “superstar.”
Filed Under: Autism, Cordy ·


Mar 27, 2012

Apple Dumplings a la Me

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When my old job was eliminated, one of the things I vowed to do was become more domestic. (It’s back there on that giant to-do list.) In our house, my husband is the cook. Yes, I have two hands and a brain to put together food, but somewhere between gathering the ingredients and removing it from heat, I generally screw something up to make a meal inedible.

Yes, I’ve actually burned water, if you count leaving water to boil on the stove too long so that it all boiled off and then the pot somehow caught fire.

The one exception is baking, where I tend to be a little better with results, but it can still be hit or miss.

Last week, Ree Drummond, better known as The Pioneer Woman, was in town for a book signing for her new book, The Pioneer Woman Cooks: Food From My Frontier. A group of us gathered for dinner the night before, where I shared with Ree that I planned to use her cookbook to help me in my goal of learning to cook.

(Amy, Ree, Momo, Wenderly, and me)

When I told Cordy and Mira who I was going to see at the bookstore the next day, they insisted on coming along. Cordy has recently decided she wants to be “a sewer, a cooker, and a mom” when she grows up, and Mira echoed that she wants to be the same, but also a vet. I had planned to go alone, but since they were so excited I agreed.

Ree planned for that same small group of us to meet in private before the big signing. We got to the bookstore 45 minutes before the signing started, and already there was practically no parking and the store was jammed full of women holding Ree’s book and lining up to meet her. With Cordy in tow, I was very thankful we could meet in private – she can’t handle waiting in lines and crowds make her extremely anxious and flappy.

Of course, when finally given the opportunity to meet Ree and tell her how much they want to be “cookers” when they grow up, my girls clammed up. Well, Cordy was too distracted to say much more than hi, and Mira focused on Ree’s necklace while placing her hand directly on Ree’s boobs. Mira has a bad habit of trying to get someone’s attention by reaching up and putting her hand on someone’s belly, which as she’s grown has now extended her reach to boobs. Insert my horror in any public situation with her here.

But they did pose nicely for a photo.

Once home, the kids begged to start making food from the book. I put it off until the weekend, and for our first experiment, I picked something to bake: apple dumplings. Baking is my stronger skill, so I wanted to ease into it.

One thing I love about Ree’s book (and her blog) is the number of clear photos she has showing each step of the process. When you’re domestically challenged like me, this is very, very helpful.

The first step was peeling the apples. Um, wait, how do I do that? I grabbed a knife and muddled through it, ending with most of the apple still on the core and no sliced fingers. I’ll call that a success.

Aaron was better at it than me.

But when it came to coring the apples and slicing them into 8 equal slices, I turned to modern convenience:

Hey look, that’s easy!

Rolling the slices into the crescent roll dough wasn’t hard. Mira asked if she could help, picking it up faster than me.

Rollin’, rollin’, rollin’…

We poured the sauce/syrup/whatever you want to call it mixture over the rolled up apples and then put it in the oven. The result?

Clearly, this will never be a food blog & I will never be a food photographer.

I gotta admit, it smelled amazing. And tasted pretty good, too.

OK, so it took the whole family to make apple dumplings (minus Cordy, who decided she really wasn’t that interested in it, but was still willing to taste test), but it was a good first start.

(Full disclosure: this isn’t really a review. I bought the book myself, and while I told Ree I planned to use the book to help me cook, she wasn’t expecting any kind of review. But if you ever meet her in person, you should ask her to show you what she can do with the Juicy Fruit app on her phone.)

Filed Under: Cordy, domestic zero, family time, me me me, Mira ·


Mar 22, 2012

No Answers, More Questions

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After all of the drama of last week’s visit to the doctor and the following blood draw to test for allergies, I had hoped to report one satisfying resolution to that arc of Mira’s story.

Unfortunately, life doesn’t seem to resolve mysteries as in novels or neatly storyboarded television shows, with all loose ends tied up and answers revealed.

Waiting for the results, I was focused more on what kind of lifestyle changes we might have to make to accommodate Mira’s allergies than anything else. What if she really was allergic to dairy and we had to go dairy-free? Or what if she had inherited the seasonal allergies of Aaron or I, but even worse, and would need to start allergy shots to bring some relief?

I didn’t hear anything by Friday afternoon, so I called the office and asked about the results. The doctor we spoke with last week wasn’t in the office, so one of the nurse practitioners called me back a little later with the full report.

Of the enormous list of food allergens and environmental allergens that Mira was tested for, she was allergic to…

None of them.

Wait, what?

The blood test showed no measurable allergy to anything in the test. This included about every kind of pollen, mold, and animal that she might encounter in Ohio, as well as all of the common food allergies and cinnamon. However, the nurse practitioner said the test results did show an elevated IgE level, which indicates she’s having a reaction to something, we just don’t know what.

The next step? Not sure yet. I have to get back in touch with the doctor to determine where to go from here. We may be seeing an allergist, or she may want further tests first. Either way, I need to make sure her symptoms aren’t forgotten. Mira’s flare-ups are random and she hasn’t had a vomiting episode/cramping in nearly a month, but we know it’ll happen again. And the eczema on her head is only slowly responding to the steroid treatment.

I’m glad this kid has such an easy-going personality. She was telling her preschool class last week about the blood draw and described it as, “It really hurt, but they weren’t being mean. They were just doing what they needed to help me feel better. They weren’t trying to hurt me.” Mira knows there may be more testing involved, too, and while I’m sure she won’t be as brave in the moment, she still says she’ll be brave and knows we only want to make her feel better.

That’s Mira – the kid rolls with anything life sends her way. Although she’ll make sure to remind you of the story of her bravery at least once a day for the next month, usually with some parts exaggerated for dramatic flair to make her the star/hero of the story. Maybe she needs her own blog – once she learns how to write.

You’d have thought the St. Patrick’s Day parade was in her honor the way she tells the story.
Filed Under: daily life, Mira · Tagged:


Mar 15, 2012

Mystery Diagnosis

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Mira was supposed to be my “biologically strong” child. Cordy inherited my pale, sensitive skin. Along with autism, she also has a sensitivity to artificial food dyes, has to have her clothing in natural fibers and washed in dye-free, perfume-free detergent, requires fragrance-free lotions, burns if the sun even comes near her skin and easily develops a rash. Mira, on the other hand, is neurotypical and inherited Aaron’s ability to never burn, but rather just develop an even, glowing tan as the summer progresses. She also seemed to have an iron stomach as a toddler, eating nearly anything with a preference for spicy food.

So when Mira started to develop a few strange symptoms last year, I tried to pass them off as nothing. A bit of a rash here and there, occasional bad stomach aches and other digestive issues that I won’t embarrass her future teenage self by writing here. Then she had stomach aches that switched into vomiting, followed by days of practically no appetite. And the rashes continued, to the point of bleeding at times. All of these symptoms lasted a short time and then wouldn’t appear for weeks.

In recent months, the rashes and stomach aches have continued. (She doesn’t have them all the time – they continue to come and go in patterns of days to weeks at a time.) I had hoped they might just go away permanently with a gentle diet and plenty of lotion for sensitive skin, but nothing has helped. Then last week, a new symptom appeared: scaly patches of eczema all over her scalp. I couldn’t ignore it any longer: it was time to see the doctor.

Do you know how hard it is to explain to the doctor why you’re there when you have about 10 semi-related symptoms that aren’t very serious when considered alone but when put together make Google tell you she could have some terrible disease? And even worse when you’re a nurse and don’t even need Google to tell you some of the life-altering conditions that could be diagnosed from these symptoms. I tried to calmly explain it all to the doctor, but even she seemed puzzled by the combination.

The doctor is leaning towards a diagnosis of an allergy, but we have no idea what it could be. Environmental? Food? Who knows at this point. She ordered a prescription steroid solution to help with the eczema and sent us right across the street to the Nationwide Children’s Hospital lab to get blood for an allergy panel. With this many symptoms, it was decided to skip straight to the blood test and avoid elimination diets and skin tests.

Mira was amazingly cheerful through all of this. She told the doctor all about her issues, acting like it was no big deal. She’s lived with many of these issues (off and on) for nearly a quarter of her life, so I’d imagine it is an everyday thing to her.

Getting blood drawn, however, changed her demeanor entirely. I was honest with her about what would happen and she became very nervous as we sat in the waiting room of the lab. She asked if it would hurt, and I told her it would, like a shot does, but only for a moment. Mira has been very brave with shots, so I hoped she’d be OK with this, too.

She wasn’t OK with it. As the med tech looked at her arms to find a good vein, she started to get upset and cry. She held still when the needle went in, but sadly the tech missed and spent WAY too long (in my opinion as a nurse) digging in her arm looking for that vein, which I’m sure hurt a LOT. At that point Mira was no longer brave and just wanted away from that place as fast as possible. Even when the needle was removed she continued to cry hard.

So when she realized they had to do it again (phlebotomy is an art, sadly, and you don’t always get it on the first try), no amount of stickers, suckers, toys or ponies could persuade Mira to go along with this plan. She cried “Not again!” over and over and tried to get off of my lap to run away. I felt horrible. Holding her down for another needle to hurt her made me feel like I was betraying her trust.

They brought in an IV nurse for the second try, and even though Mira was crying, screaming and not nearly as still as before, she got it on the first try and it was all over quickly. It took Mira several minutes to calm down, and Mira and I both felt traumatized as we left the building.

We’ll have the results of her allergy test by the end of the week, and then will decide where to go next, or how we’ll have to alter our lives if she does have an allergy to something we’re exposed to daily.

However, I can tell you there’s nothing wrong with Mira’s memory. She remembered she was promised a sticker. And when we got home she remembered I promised her fruit snacks. And a sucker.

The only reason she’s smiling is because she has a sucker in her hand.

She also brought up the bribe of a toy, too. We’re still negotiating that one.

Filed Under: Mira · Tagged:


Mar 13, 2012

Two Nights In The Woods – Internet Isolation

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Aaron and I celebrated our nine year anniversary by visiting the scenic Hocking Hills for three days last week. I found a great deal for the Inn at Cedar Falls (not a review thing at all – bought and paid for and well worth the money) and so we left our city and drove to the hills to stay at our own little cottage in the woods.

Yes, a small cottage in the woods. Although not a very rustic cottage, however:

King-size bed, gas fireplace, indoor plumbing with hot tub – I loved it so much.

But in some ways, it was very rustic. As in, no phone in the cottage, no TV, no internet, and no cell phone service. We were completely cut off from the rest of the world. A chance to get away from technology and simply focus on each other, right?

So we must have looked insane as we sat in the inn’s restaurant with our iPhones, connecting to the restaurant’s wifi and desperately trying to angle our phones just right to get a cell signal to send out a text.

We might have an itty-bitty internet addiction problem.

OK, so that wasn’t all of our weekend. We did enjoy a (fantastic, incredible, amazing) dinner at the restaurant that night (in-between checking Facebook), and back in the cottage we played card games, watched The Muppets on DVD (what? No one said we couldn’t bring our laptops if there was no TV!), took full advantage of the hot tub, and enjoyed being together without the kids.

And then on our second day there, the weather switched from pouring rain to brilliant sunshine. So we went hiking. We didn’t plan on doing more than the easy trail at one park. Instead, we did the difficult trail at that one, and then went hiking in two other parks as well. Total hiking time was over four hours in the day!We had so much fun, and were in awe of the beauty of nature around us.

Waterfall at Ash Cave – tallest waterfall in Ohio
Hanging out in Old Man’s Cave.
More from the trail near Old Man’s Cave

Cedar Falls (one of the side waterfalls)

When we got home, we felt out-of-place surrounded by all of our technology again. It was good to be home, but it was an odd transition.

I highly recommend taking your significant other into the woods away from all technology. Well, keep the indoor plumbing and heat, of course, but no connection to the outside world. It’s a great way to reconnect, to discover new aspects to your partner, and to laugh at each other as you climb over your partner holding your phone just so pointing out a window to try for that one bar of cell signal.

Totally worth it.

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Filed Under: Aaron, clearly insane, love, me me me, memories, more than parents ·