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Jul 24, 2013

An Honest Answer

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Scene: yesterday, while discussing me going to Chicago this week for BlogHer ’13.

Mira:  Mommy, I’m really going to miss you.

Me:  I know, sweetie, but I’ll only be gone for a few days.

Mira:  I’ll still miss you and think about you every day.

Me:  Thank you, Mira. I’ll miss you, too.

(turning to Cordy)

Me:  What about you, Cordy? Will you miss me while I’m gone, too?

Cordy:  (shrugging) Nah.

Aaron:  Cordy, you’ll miss mommy when she’s gone, won’t you?

Cordy:  (backpedaling) I, uh, I mean…I’ll try to miss you!

Aaron:  Not quite right.

Cordy:  Oh, OK, I’ll try NOT to miss you!

Me:  It’s OK, Cordy, I’ll miss you, whether you miss me or not.

Sigh.

Filed Under: Autism, Cordy ·


Jun 27, 2013

Looking Ahead

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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.

Filed Under: Autism, Cordy · Tagged:


Jun 7, 2013

Another Day, Another Evaluation

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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.

Filed Under: Autism, Cordy · Tagged: , ,


Apr 22, 2013

When Your Big Sister Has Autism

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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.

Filed Under: Autism, Cordy, Mira, sisterhood ·


Jan 29, 2013

Twice Execeptional: Twice the Fun, Twice the Challenge

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I generally get nervous when I see the elementary school’s phone number appear on our caller ID. In the past two years, I’m pretty sure they’ve only called with something positive once or twice. Generally the call is either from the school nurse, letting me know one of my children displayed her superhuman ability to be clumsy and injured herself, or Cordy’s teacher letting me know about some incident where she got in trouble or had a panic attack.

So when I received a phone call from the school recently, I didn’t answer it because I was already on the phone trying to make an appointment for Cordy with an occupational therapist. After the trouble she had earlier this school year with her anxiety at school, we set up an appointment with her pediatrician to discuss what to do. He recommended an OT he knows to help Cordy get through her anxiety. We agreed we don’t want to consider medication yet, so this is our first step towards helping her cope with her constant anxious state.

The school left a message, so I knew it had to be something important, but at least a voicemail gave me time to react and process whatever they said before I had to call them back. I played the message, and it was from the school psychologist.

He mentioned that Cordy had been doing some testing with him as part of her three-year evaluation (all kids with special needs services are evaluated every three years to make sure they still qualify) and he wanted me to call him back to set up a time to go over all of the cognitive testing he did with her. He also mentioned what an interesting and delightful child she was, so I at least knew the testing couldn’t have been a complete disaster.

I didn’t know that he had been testing Cordy. Two weeks before that, a woman from the gifted and talented department came to the school to evaluate Cordy, and days before the psychologist called we had received her results. Cordy had an impressive score on a cognitive abilities test, earning her the label “superior cognitive” on her school record. It’ll help provide more gifted ed services for her, and I was proud of the score, but it was only one test and she had a particularly good day that day.

I wondered if the psychologist’s evaluation would match up with her recent testing? We didn’t know he was testing her, so we had no way to prep her like we did for the gifted ed department’s testing.

There was no hesitation in calling him back. As soon as I said my name, the school secretary knew why I was calling and transferred me to the school psychologist. He was only supposed to set up a time to go over the results in person, but he was bursting with excitement to give me the highlights of what happened from testing her that morning.

The good news: she still qualifies for special needs services. She meets the criteria for autism (no surprise there), although he said the only presenting issues at the moment are her anxiety and her deficit in social skills. Again, no surprise.

But then came the even better news. He used multiple testing methods for her, and said she’s one of the smartest eight year olds he’s ever seen. Her IQ testing resulted in a 139, with a verbal score of 143. On one verbal abilities test, she had a perfect score. I was stunned into silence as he explained that he’s been working in elementary schools for eleven years and Cordy had the highest scores he’s ever seen.

One example he gave was in analogies: he said to her “flour is to bread like…” and she answered back with “like hydrogen is to water!” Her science vocabulary was especially impressive. (Thanks to Netflix and the full series of the quirky Beakman’s World on instant streaming – our #1 source for science lessons!)

We met yesterday and went over the full results. I’m so proud of Cordelia. He said she was enthusiastic about the testing, as if she really liked the challenge to prove what she knows, and was incredibly sweet and charming. He also started the thought in my mind that the public school may not have enough resources to fully provide for her education at the level she’s at. We’ll need to consider supplemental resources to keep her engaged and wanting to learn.

I’m trying not to brag, but it’s so fantastic for a parent to get good news about their child. And honestly, the confirmation of her cognitive skills creates several issues for me. We always knew Cordy was bright, but to get confirmation that she’s highly gifted means I need to pay closer attention to making sure she’s challenged and getting material at her level. At the same time, her anxiety really needs attention now, since it tends to flare up when she feels something is too hard. It’s a delicate balance.

Technically this makes Cordy “twice-exceptional” (also called “2e”), meaning she’s both gifted and special needs. I have a child who still can’t wear jeans because she can’t reliably work a button but can explain the meaning of the word dehydration. I found this chart on the wiki page for twice exceptional, and aside from a couple of items, it’s an eerily accurate description of my daughter.

Stubborn? Imaginative? Sensitive? Yes. Perhaps not the sophisticated sense of humor…

So now that I’m armed with this knowledge…I have no idea what to do next. She’s doing well in school, but nothing particularly outstanding. I know she’s bored on some level, but also resistant to being pushed to learn new things faster. We’re moving forward with occupational therapy in the hopes it can help her developing coping mechanisms to deal with anxiety.

She’ll be eligible for the school’s gifted classroom in fourth and fifth grades, and will continue to have limited gifted instruction until then. We can’t really consider the possibility of private school because they’re just too expensive around here. There is financial aid, but we’re in that boggy middle ground where we make too much to qualify for aid, but would be on a ramen noodle budget to pay for private school.

I’m sure there have to be resources out there for twice exceptional kids, possibly even in our community. It may be time to spend a day with Google to see what’s out there, either in enrichment activities or parent groups or any other kind of support. I was a gifted student myself, so I have some idea of how to help Cordy with that. It’s incorporating it with the autism that makes it a little harder.

All of this, of course, is nothing more than labels and changes nothing about the cheerful, quirky, loveable little girl we have. But those labels do give us more insight into why she does what she does, and can help provide the justification for arranging educational experiences that will provide the most benefit for her.

Gifted or not, autism or not, she’s still our Cordy, and we have the responsibility to do what’s best for her (and Mira), just as any parent does. But hopefully we have a better map to guide us towards what she needs going forward.

I love that kid and her sister so much. They’re exceptionally sweet and quirky, and I wouldn’t have them any other way.

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Filed Under: Autism, Cordy, school, shameless bragging ·