When Your Big Sister Has Autism

It was an evening like any other Saturday evening. Cordy and Mira were both tired after a long day. They ate dinner and then got into their usual argument over which movie they’d like to watch that night. Aaron tried to be clever and asked them to each tell him (in secret) which five movies they most wanted to watch, hoping that there would be a couple they’d have in common.

There were none in common, of course. Which led to more arguing. Mira finally sighed that The Lion King (on Cordy’s list) was close enough to The Lion King 1 1/2 (on Mira’s list), and agreed to Cordy’s choice. But she threw in her oft-repeated complaint that it isn’t fair that Cordy won’t compromise, and how she always has to do what Cordy wants to do.

The peak of Mira’s frustration came at bedtime, though. While I was turning on Mira’s bedroom light, I heard them arguing in the bathroom. Mira puts her own toothpaste on her toothbrush, and if Aaron or I aren’t in the bathroom, she does it for Cordy, too. This time, I could hear Mira telling Cordy, “I’m not doing it for you, Cordy. You’re eight and I’m only five. Here, you can put your own toothpaste on.” I knew this could end badly, so I started towards the bathroom.

Cordy immediately went into her unhappy whine and starting shrieking at Mira, demanding that Mira stop being a mean sister and ordering Mira to put the toothpaste on her toothbrush. Mira held firm and yelled back, “No, Cordy! You’re older than me – if I can do it, you can put on your own toothpaste!” She then tried to force Cordy to take the toothpaste container.

Aaron came in at this point, hearing the commotion and already at his wits end with the bickering from the two of them. On first glance, I’m sure it looked like Mira was taunting her sister. He turned to Mira and angrily asked her why she was upsetting Cordy by shoving the toothpaste at her.

I watched as Mira held her ground, equally furious and ready to defend herself. Without hesitation, she looked up to meet Aaron’s gaze with a hard stare of her own, tears forming in her eyes, and exclaimed, “Because she’s eight years old! She’s old enough to do it herself!” I could hear the exasperation in her voice.

I stepped in at that point and tried to calm everyone down, reminding Mira that just because someone is older doesn’t mean they can do everything better than someone who is younger. We all have things we’re good at and things that require help from others. That did little to help soothe her sense of injustice as she cried while brushing her teeth, then continued crying as I gently tucked her into bed and wiped away some of the tears.

I understand her frustration. It has to be terribly confusing at times to be the little sister of someone with autism. Cordy was told about her autism a little over a year ago, when we explained what it meant in regards to how her brain works. Mira was told about it shortly after, and because of her age we’ve kept our descriptions simple for her. Cordy has autism, which means her brain works differently than most people. It means she’s really good at some things, but that she can also have a lot of trouble with things that many people might find easy.

Mira knows that Cordy often has limited patience for playing with others and when she does play it’s often only on her own terms. And while Cordy can teach Mira all about Skylanders and Pokemon, she’s not a typical big sister when it comes to serving as a role model for school, social behaviors and personal care. And she’s brilliant with reading, but refuses to help Mira learn to read.

Mira will likely learn to tie her shoes before Cordy. She can already work a button and zipper on her pants while Cordy remains in elastic waistband pants. Mira learned to buckle her seatbelt first. And while Mira eagerly anticipates each lesson in how to be independent and does her part to help the family with chores, any new task we ask of Cordy involves resistance and the need to do it in baby steps to gradually increase her comfort with this additional task added to her routine.

So in order to make things go smoothly and get more done, we do occasionally ask Mira to go above and beyond in helping out. She’s asked to help with the toothpaste when we’re busy. She opens food containers and packages for Cordy at times. She zips Cordy’s coat.

I know she tries to understand, but it doesn’t always make sense to her. Conventional wisdom says that her older sister should be able to do the same tasks she can do and more. And she feels like Cordy gets special treatment sometimes and is jealous of it. Mira does more chores, and even though she’s rewarded for her extra help, she still knows it’s not equal treatment. (Which I suppose is a good lesson for life, although hard on the spirit at five years old.) Mira doesn’t know it, but she benefits from having Cordy as a big sister – she’s awesome at accepting people no matter how different they seem, always doing her best to befriend anyone.

However, Mira is too young to realize just how important she is to Cordy. Being super-ultra-mega social, Mira provides constant social skills practice for Cordy. Mira doesn’t hesitate to tell Cordy when she’s being rude or make suggestions on how she should respond in a particular situation. (Whether Cordy listens or not is another matter.) She forces Cordy to cope with another kid in her territory all the time, meaning she has to share any decision on our daily activities. Like going out of the house, or sharing the computer, or watching TV, which doesn’t always end in arguments. Mira runs into Cordy’s wall of inflexibility all the time, but that doesn’t keep her from giving up. She continues to throw herself against that wall with the unending determination of a child, hoping that someday she’ll chip away at it and Cordy will do something new for Mira.

I’m an only child, so I’ve never understood the relationship between siblings. I know that siblings often fight, but they just as often share a fierce love and devotion for each other. I have no doubt that these two love each other, even with the fighting. Mira feels like an only child sometimes, Cordy feels like Mira is the stereotypical “bothersome little sister” sometimes, and then at other times the two of them are inseparable.

They really do like each other sometimes.Proof: they do get along now and then.

For now, I wipe away the tears as I again explain to Mira why Cordy needs her help, and then do what I can to make sure Mira feels important to us as well. Her frustration and feelings of injustice are sure to come back again – repeatedly. I can only hope that as she grows, her understanding of Cordy’s differences, her compassion and her generosity will continue to grow with her.



A Fair and Balanced Christmas

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.



Blissdom Musings

So last week was filled with a road-trip to Nashville for the Blissdom conference at the Gaylord Opryland Hotel. Not only did this mean getting to catch up with so many bloggers I know and love, many of whom I consider friends, but it also meant several days away from work, bills, and the crippling stress I’ve been feeling lately. In other words: I desperately needed this trip.

First: the location was beautiful. The Opryland Hotel is too amazing to be believed. There is an indoor river, people. AN INDOOR RIVER. It’s like Las Vegas in Tennessee. And the conference had a lot of great perks, including a private concert by Harry Connick Jr. on Friday night.

There was also the unexpected perk(?) of the National Tea Party Conference also being held at the hotel that weekend, including a guest appearance by Sarah Palin. Despite my having vastly different political views from the tea party attendees, watching Catherine (Her Bad Mother) discuss political science with men dressed as George Washington and Paul Revere was worth the entire trip. (Drunk on glory, Catherine!)

I didn’t approach Blissdom this year like I’ve approached past blogging conferences. While I still cared about what I wore, I wasn’t frantically rush-ordering new business cards or thinking about what kind of swag I could give out to be noticed. My game plan for Blissdom was simple: have fun with friends, maybe meet some new friends, and learn more about blogging and/or myself.

I succeeded in my plan.

I laughed more in that half-week than I have in probably a month or more. I filled my days with friends and fun. After four years of knowing her online-only, I finally had the chance to hug Amy, aka Mrs. Chicken, in person. And in meeting her, I was relieved that she was everything and more that I expected her to be. Spending time with her was like visiting with an old friend, because at this point she is an old friend.

At past conferences, I was often more aggressive at seeking out new people and “networking” to build my blog presence. However, I’m burned out on networking for the goal of building a brand or blog audience or popularity or whatever is the current buzz word of the moment.

So I took a more laid back approach. I was happy to fall into conversations when it was natural. I loved being introduced to women that my friends already knew – in every case, I saw why my friends liked them and found myself liking these women in return. But I felt no need to force myself into a conversation, and most of the time I forgot to even give anyone my card unless they gave me theirs first.

(Also? I used up the few leftover business cards I brought with me. I will have to get more for the next conference.)

As for learning more about blogging? I did a little of that, too. While I was tempted to go to sessions on monetizing your blog and growing your readership, I instead decided to stick with the basics of how to write a good story and how to let my voice come through my writing. I think I’ve been fairly good at those in the past, but of late my story has been getting lost. I want to find that story again, somewhere in the fog of working night shifts and sleepless days. My own days aren’t coherent, and as a result my story is disjointed and fractured as well. I think finding my story again will go a long way towards my 2010 resolution/goal/whatever of finding happiness again.

Oh, and I also learned that I can get up the nerve to sing karaoke without a single drop of alcohol in me in front of a room full of women I adore and admire. That took a whole new level of bravery, but I’ll say I had a lot of fun and will likely do it again. (Thanks, Casey, for helping me get up the nerve to do it, and Mishi and Heather for joining me on stage!)

After the disillusionment I felt after BlogHer last year, I’m now looking forward to BlogHer 10. Blissdom, this smaller conference that reminded me a lot of BlogHer 06, helped me throw away all of the stress of jockeying for position with my blog and simply enjoy the community and friendships I’ve made along the journey thus far.

Blissdom was truly bliss.

Photo by Heather, Domestic Extraordinaire



What Are The Odds of Two Children Looking Towards The Camera At The Same Time?

Answer: pretty slim. (WHY? Why will they never look in the same direction at the same time?)

Which is why I give you two carousel photos today instead of one.



These were taken before the carousel started. What you don’t see are the photos of Mira attempting to strangle me as she tried to get off the horse while it was moving. I’d like to state for the record that it was her idea to ride.



The Journey To Sisterhood

Yesterday I read a post by Liz at Mom101 that made me think back to the early days of when Mira was a newborn and Cordy was a wild, intense, temperamental 2.75 year old. Those first weeks were a complete blur of emotion and sleeplessness for me as I tried to adjust to meeting the needs of a new little person and her big sister, who was needy in different ways.

The thing that broke my heart when Mira was little was Cordy’s complete lack of acknowledgment of her new sister. It was like Mira didn’t exist to her. Of course, this was also pre-evaluation when Cordy didn’t notice other kids most of the time either. I would sit on the couch, holding Mira and asking Cordy to come say hi to her new sister, only to have Cordy come say hi to me, not understanding this little wrapped up bundle in my arms was another human being.

Completely unaware of the other human being right next to her

It took months for Cordy to notice Mira, and all progress was tied directly to her progress in therapy in her preschool. As she ventured out of her internal world, the external world came into focus, and with that world her little sister, who desperately wanted the attention of this big kid in her space.

I remember when Cordy would run laps in the living room while Mira was in her exersaucer – as Cordy would come closer, Mira’s face would brighten with a smile and her arms would wave wildly to get Cordy’s attention. As Cordy ran past, Mira’s smile would fade to a slightly confused, slightly down expression, realizing she hadn’t been noticed. Repeat x 100.

I would cry at night, thinking this distance between my two girls would be permanent and Cordy’s emotional distance would prevent them from ever being close.

If we don’t make eye contact, she doesn’t exist.

Ever so slowly, though, Cordy recognized Mira. She would hear Mira cry and say, “Mira’s hungry!” Or hold Mira’s hands and move her arms back and forth like she was a toy. I then caught her hugging Mira once. Then instead of eating Mira’s snacks, she would feed one to Mira. For her part, Mira never gave up on Cordy, always initiating contact with the older girl who seemed unreachable at times.

But now. I can only say we’ve come a long, long way. Cordy still doesn’t always understand that Mira has feelings too, but she recognizes Mira as her little sister and as a fellow person. I’ll credit part of that to Cordy’s therapy, part of it to typical kid behaviors and maturation, and part of it to Mira’s insistence that Cordy WILL pay attention to her, dammit, even if she has to sit on her. They occasionally play together, and even if it is (usually) too rough, they both giggle until someone inevitably cries, and then they go back to wrestling and giggling again.

They are now sisters.

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