Looking Ahead

Cordy had her first meeting with a behavioral therapist  last week. Her psychologist had recommended setting up a meeting, but it had slipped my mind until last Wednesday when the therapist called and asked if we could meet that Friday. At our house. (Yes, I frantically cleaned.)

The meeting went well, I think. The behavioral therapist wanted to get a general assessment of Cordy’s personality, as well as what she’s struggling with and where she needs help. Since it was at our house, I expected that Cordy, having been tired already from summer camp that day, would probably let her guard down and just be herself.

Cordy is a smart kid. She’s aware that she’s different from other kids and when Cordy is at school or summer camp, she tries her best to hold in a lot of her quirks. Her teachers see very little stim behavior in the classroom, with only a little more of it on the playground. She rarely snaps at anyone at school. But at home, she knows she’s in a safe space and usually lets off steam as soon as she gets home. She’ll often flap, pace, make up a story to herself, or isolate herself with a book or computer time. If we ask anything of her, she’ll sometimes overreact and snap at us.

Meeting the therapist, however, she kept up the in-public facade for most of the hour. She was sweet and charming, answering the therapist’s questions and asking several questions of her own. There was no stimming, other than a little bit of wrestling with the dog at one point.

But the disconnect was still there. Cordy had a book in her hand nearly the entire time, and if she lost interest for even a moment, her face was quickly hidden behind the turning pages. She became loud and almost shriek-y when talking about the things she fears (bees, bugs, roller coasters, Kaos in Skylanders, the dark), although she wouldn’t discuss the real social anxieties that make it hard for her to function at times.

And she became upset with me when I told the therapist about where she needed to improve in her life skills, listing age-appropriate self-care tasks and basic safety precautions that we’d like her to do on her own but have seen little success. Cordy tried to shush me, saying I was “giving away all of [her] secrets.” She’ll gladly talk superficial fears and tasks that she has trouble with, but when we try to talk about real anxieties and areas of deficit, she becomes hyper-sensitive and doesn’t want anything said. My daughter, the perfectionist. The therapist said that’s a very common trait of gifted and twice-exceptional children – they hold themselves to nearly impossible standards and can’t stand for anyone to think they’re not perfect.

She likes to win.And most kids just accept an end of the school-year award and stand on the stage. Cordy is ready to give an acceptance speech for being The Best. We should probably add modesty to our list to work on.

It was surprisingly difficult to talk so much about Cordy’s issues. I usually try to balance everything out with a positive quality for every problem area, like “Well, she doesn’t really have any close friends…but she’s so sweet to other kids and can tell great jokes!” Not to mention, Cordy was sitting right there in the room with us – what if she was internalizing everything I said? Sure, she was mostly absorbed in a book when I was talking and likely heard little of the conversation, but I was carefully considering every word choice in the moment so Cordy wouldn’t think I didn’t like her for her faults. I danced around each topic, pointing to “areas to strengthen” and “ways to help her be more successful” instead of “problem areas” or “bad behavior.”

And I wasn’t sure where to draw the line in sharing so many of my daughter’s weaknesses – did I sound like the hypercritical parent who considers her child “broken” over a bunch of faults (oh, I hope not!) or did I dismiss her problems too much and make it appear that she really doesn’t need any help and I’m making a big issue out of nothing? I named several problem areas (that I didn’t call problem areas), big and small, specifically to have them said out loud to a professional, so that we might then find solutions to overcome these issues.

The therapist listened intently and took a lot of notes during our discussion. She plans to consult with the psychologist to determine where to begin, and then we’ll start working on learning new adaptive skills in two weeks. I’m hoping this will be a new period of great progress and growth for Cordy. I only want for her to be better prepared for the world around her and help her better cope with her peers and the outside world before she reaches (oh…it’s hard to even think about this) puberty.

Because we all remember middle school (some of us would rather not), and I think few would say that the majority of 11-13 year old kids are tolerant and accepting of peers who are different and don’t quite fit in. I’d like to be proven wrong on that statement, but I have my own emotional scars from middle school and I’d also rather prepare my daughter for what’s ahead.

I don’t expect or want her to conform to the behavior of her peers, although I do want her to better understand “typical” social behavior if only to know what is OK from her peers and what is rude or harassing behavior that she should not tolerate. And a little part of me wants her to learn the social game, if only a little, so that she might find enjoyment in friendships.

We’ll see how this goes, but I’m hoping for good results.



Another Day, Another Evaluation

Yesterday I spent the morning in a psychologist’s office. No, not for me, although I think we can all agree I’d probably benefit from a visit. This was for Cordy. Her county service provider had told us last month that she was due for a re-evaluation by the time she turns nine in order to still qualify for county funding. Since things like social skills classes and other behavioral services are rarely covered in full by insurance, this funding is tremendously helpful.

She was last evaluated when she was four years old, which was when she received the PDD-NOS diagnosis. Yesterday we saw the same psychologist that we met with four years ago. I wondered if she’d remember the stubborn, curly-headed four year old from years ago, or if she’d even recognize her after she had grown and changed so much. I also worried that there was a chance that Cordy would try to fool the tests and appear perfectly typical, losing her diagnosis and possibly any future assistance.

It didn’t help my fears that she woke up that morning perfectly cheery and agreeable. She’s been an irritable crankypants for the past few weeks, easy to anger, wanting to be left alone as much as possible, but on the day when I was hoping a professional would see these behaviors, she woke up as Miss Sunshine, happy to chat, polite as can be.

Cordy has also become accustomed to testing. In this school year, she’s been evaluated twice for gifted education, and she also had a re-evaluation for the school district. At this point she likes the testing, and she’s also becoming self-aware of being different and wants to know more about it.

As we drove to the office, Cordy asked me, “Will this be like the other tests I’ve had this year?”

“Similar,” I replied, “You’ll probably answer a lot of questions from her, and you’ll probably be asked to solve some puzzles.”

“Oh good! I like puzzles. Will she tell me why I have autism and think different from others?”

Oh dear. “Well, I don’t think she can tell you why you have autism. But I’ll bet she’ll tell you that if you do think differently from others, it’s not a bad thing at all. We’re all different, and being different makes us all interesting, right? And she can probably help you understand things that don’t make sense to you, but I doubt she can do all of that today.”

That seemed to be enough for her, and she went back to reading her book. At the office, the doctor did indeed remember Cordy, and asked me to explain what’s changed since she last saw her. I didn’t think we had time for all of the changes, so I summarized as best I could. Cordy was already distracted by everything in her office, and started spinning in her office chair, then found a small ball and tried to bounce it off of the walls.

After we talked a bit, I was sent to the waiting room with a parent questionnaire to fill out while she evaluated Cordy. It’s so hard to describe all of your child in a series of questions that are answered with Often, Sometimes, and Never. I again worried how Cordy was doing in the office. When she met with the school psychologist earlier this year, he said he didn’t see any of the behaviors her teachers had reported and said that if he had only seen her for that one meeting and didn’t have any other data, he would never have suspected she was on the autism spectrum. Of course he also said Cordy asked him repeatedly how she was doing and would ask if she got certain questions “right” – being perfect was her goal, and she was trying to shape her responses to what she thought he wanted her to say.

I also had that awful voice in the back of my head saying What if she really isn’t on the autism spectrum and you’re just a bad parent? Despite having her diagnosis confirmed for us more than once, I still struggle with that absurd criticism that we’re really forcing a label onto nothing more than bad parenting, since she’s so high functioning. If we had only forced her to do more for herself and behave properly, blah blah blah. It’s a horrible idea that doesn’t deserve any of my energy, but it still pops into my head in times like these.

It felt like I was in that waiting room for hours, but after about 45 minutes Cordy came out to meet me. The psychologist explained that she’ll review everything and would write up her results and send them out to us in a few weeks. My impatience got the better of me, though, and I asked if she could at least give me initial impressions – does my daughter still have PDD-NOS or was there anything else she saw?

The doctor said it’s without a doubt that Cordy is on the autism spectrum. She’s using the new DSM 5 guidelines, so it would be called Autism Spectrum Disorder now, but she said it’s likely under the old DSM 4 she’d fit better under the Asperger’s diagnosis at this point. She wants to get Cordy enrolled in a social skills group in the fall, and she wants to set up a meeting with us and her behaviorist as soon as possible.

Apparently when she asked, “What do you do if there’s a fire?” Cordy responded, “Call 911.” And then she suggested after you call 911 that you try to put out the fire. (facepalm) I’d like to explain that we’ve told her several times that the first thing you do in a fire is get out of the building, and the fire department even came to their school and taught them all fire safety, but the message didn’t stick with her. So that’s something to work on with the behaviorist.

I’m looking forward to reading the entire report, and I’m glad Cordy has been such a good sport through all of this testing. She’s an amazing kid, super-smart, and with such a unique view of the world. She’s got plenty of things she’s not good at, but don’t we all? If she can conquer some of her fears and better learn to live with other people around her (which…I get it. Some days I don’t like people very much, either.), there’ll be no stopping her.



Daughters Aren’t Always Hair Models

For the past two weeks, I’ve noticed Cordy putting her hair in her mouth. This practice drives me crazy and I’ve asked her to stop as soon as I see her do it. A few times I’ve threatened to have her hair cut super short so it won’t reach her mouth. Of course, this is an empty threat – she’s grown to love shorter hair, and I’ve become fond of fewer screaming fits over combing her hair.

Cordy has hair that many people would pay a high price for. It’s super-fine in texture, and her mane is super-thick. There’s so much hair that it takes effort to part it, then keep parting it, and then push even more hair out of the way to finally find her scalp. You could say she’s got the Rapunzel effect with hair follicles instead of length, and it easily tangles.

It’s not fair that a child with such amazing hair would also have such amazing sensory issues related to her head. I had to distract her and secretly trim her hair until she was six. Years of hair combing still haven’t made her accustomed to it and she still fights against the comb.

I miss this hairI miss all that hair from when she was little – but I don’t miss combing it.

I’d love her to have gorgeous, long locks of hair that we could style and put in ponytails or curl, but I know it’s unlikely to happen. For both our sakes, I will take her to the stylist right before summer to take more length off to get us through the warm, humid summer. She hates having it cut, but she hates having longer hair combed even more.

Mira, on the other hand, does not have her sister’s hair issues. Her hair is also fine, but there’s not nearly as much of it. And her head isn’t as sensitive. She loves to play dress up, loves hair clips, and loves to look pretty. She can be my little hair model then, right?

Nope. Turns out, this kid LOVES having short hair. She thinks it’s cute.

Cute short hairOK, she’s right. It is super cute.

When I asked her today if she’d let her hair grow out so we can put it in ponytails and braid and curl it, she agreed at first, then later came to me and said, “Mommy? I don’t think I want longer hair. My hair is too cute when it’s short! But I’ll help style your hair, OK?”

Ummm…I don’t know if I feel so comfortable with that.

I’ve had long hair for most of my adult life. (With one very bad period of short hair.) Despite having long hair, I’m not very skilled at doing anything with it. That’s part of the reason I love longer hair – it doesn’t need a lot of styling, and the basic ponytail requires little effort.

If I can’t play with my daughters’ hair, maybe it’s time for me to learn how to do more with my own hair. This video is where I’m starting: learning to put hot rollers in my hair. Maybe I should let Mira watch it, too? She’d be great at handing me the pins for the rollers.

Other bloggers are choosing their favorite hairstyle tutorial videos and asking for your opinions on which you love most. Each week, BlogHer is giving away prizes to 3 lucky winners: one grand prize viewer will receive a $250 Visa gift card and two more folks will each receive a $100 Visa gift card! Visit the Prizes and Promotions page on BlogHer.com for more info!

Hair Sweepstakes Official Rules.



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.



The Secret to Spring Break: Candy and Cardboard

Whew! Last week was a little rough on me. Every year I say that I’m going to plan something fun and structured to do when the kids are out of school for spring break, and every year the time comes and I’ve got nothing planned.

That week off of school is always a wild time for us. Cordy thrives on schedule and routine, and even if I did put a routine in place for the week, it wouldn’t be enough since it wouldn’t be the same routine she’s used to with school. So she’s generally either cranky and super-sensitive, or she’s zoned out playing games on the computer. (Which I allow more than usual, because it keeps her calm.)

Mira, on the other hand, wants nothing more than someone to play with her. I sometimes laugh (so I don’t cry) at how we had two daughters who could be such opposites: Mira wants companionship and begs Cordy to play with her, while Cordy wants nothing more than to be left alone and not bothered by her little sister. Whether they are playing together or not playing together, someone is always unhappy.

You can see how this scene plays out over a week of being home from school. However, I’m becoming a very good mediator, so I guess there’s some good to come out of it.

I decided (thanks to a coworker’s brilliant suggestion) to let them eat ALL of their Easter candy on Monday. Yes, all of it. I even threw in some leftover Halloween candy, too. They were also given unlimited TV and computer time. In exchange for this, they were agreeing to let me work with as few interruptions as possible, and to not fight with each other.

I’m somewhat stunned to report that it worked rather well. You’d think two kids with that much sugar running through their bloodstreams would be difficult to handle, but they were surprisingly pleasant and the day went better than expected. Bonus: nearly all of the candy is gone from the house. Double bonus: at one point Mira asked me, “It’s still OK to eat some healthy foods today, right mama? I’m tired of candy – can I have a banana?” WIN.

My mom came to the rescue on Tuesday and part of Wednesday, taking the kids to my aunt’s house so I could get more work done.

Aaron wasn’t working on Thursday, so he was primarily in charge of entertaining the kids. I did join in on a lunchtime trip to Chuck E. Cheese that day before I sent them out of the house to work in peace and quiet.

Friday was the hardest. Aaron was at work, I was home with the kids, and they had officially hit a wall with spring break. The novelty of no school had worn off and they were bored. For Cordy, this means she wants to retreat into her electronic devices as much as possible and avoid all human contact, especially contact with her sister. For Mira, being bored translates into being hungry ALL of the time and a need to bother Cordy. We were reaching Mom Annoyance Threat Level Red very quickly.

Our salvation came in the form of a UPS delivery man with a package. My new Keurig arrived (purchased to replace my dead one) and it was sent in a large box. As I pulled it out, Mira walked into the kitchen and noticed the big empty box. “Wow, that box is big!” she exclaimed. “Look! I can fit in it!”

I nodded as I was rushing to set up my new caffeine provider. I looked back at her just as a moment of inspiration crossed her mind. “Mommy? Can I have this box? It can be my spaceship!”

Her idea took flight in my own brain. “Why yes, Mira, that’s a great idea. You should go grab your markers and decorate the box so it looks like a real spaceship!”

She fell out of the box, scrambling to get her markers before I changed my mind about letting her use them. Returning to the kitchen with the whole pack, she set to work drawing stars and planets and different shapes all over the box.

Cordy even became interested and asked if she could join in. The two of them spent an hour making it look just right, while I sipped my first cup of coffee from my new Keurig. (It was a very, very happy hour for all of us.) The next hour was spent playing in the box while I worked.

I’ve never seen them work together so well and have so much fun with something as simple as a box. Why have we spent all this money on toys and games when all I needed was some cardboard?

To sum up: candy and a cardboard box were the most successful distractions of spring break. Take note, parents! Apparently the simple things in life really are the best.

Still, even with finding some success, I shed no tears in loading them onto the school bus again this morning. We all need our usual routine.

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