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It is often noted that children with Autism like to line up their toys. Along with lacking eye contact and displaying little affection, it’s become one of the red flag traits that can sound the alarm for parents.
Most of us know that absence or appearance of one particular trait does not an Autistic or NT make.
Chee was never prone to lining up toys when she was younger. She definitely lacked varied and imaginative play, but her preferred MO was repeatedly pressing buttons on toys to make sound or lights. No big surprise when by the time she was 18 months we had become a battery-free toy house. Oh sweet silence!
Lately, however, I have been seeing more and more of this:
When what I’m used to seeing is this:
And it doesn’t end there.
A few days ago there was a line of puzzle pieces stretching across her room.
She also likes to line up her crayons. And all of the headbands in the “hair box.”
The Princesses can be seen spanning the length of the playroom.
My favorite was when she lined up a bunch of small plastic things and told me she was making a bridge.
I think it’s kinda cute.
Because it’s Ess.
That’s right. Ess, my little NT girl who is full of pretend play skills, has a great sense of humor, is advanced by about a year in her language skills, and kicks ass in the imagination department, loves to line up toys.
The two pictures up there are a perfect illustration of how Chee plays compared to how Ess plays. Ess has all of the stuffed animals and dolls sitting upright in two neat rows.
Chee’s dolls and animals are tossed willy-nilly in a giant upheaval. Side by side they sat, playing with these toys a few weeks ago, and this is how they left them.
Ironic.
What it illustrates to me is that the traits that have been deemed Autism traits are actually just human traits.
Ess lines up toys. My husband processes slowly. Sometimes I’m a social buffoon.
Human traits.
There was a time, not too long ago, when I looked at Chee’s ASD traits as things that needed to be fixed. We don’t want her to flap her hands when she’s excited. Got to overcome the scripting. Cure those social skill deficits.
Human traits. She happens to have a collection of traits that, when grouped together, present challenges in learning and communication. More severe for some than others. I know that.
Slowly I’m making my way to a place, however, that says these are human traits, not deficits that need to be therapied away. Not that we’re going to stop therapies (heck no!), but more like I’m stopping the worry and the overanalysis.
Keeping moving toward acceptance of differences. Of all human traits.
Do you ever wish you were someone else?
I don’t mean an actual someone else whose identity or life you wish to assume, but I mean a different version of yourself?
Does that make sense? (It does in my head.)
I wish this all the time. It’s kind of sad.
My alternate-persona (AP) wishlist includes things like being more organized, having my house clean and picked up daily, cooking with more variety.
Living as my AP, I would somehow have all the chores done each morning so that I could engage my children in meaningful crafts, or games, or nature outings.
My meals would be planned, all healthy and full of variety, and my grocery shopping skillfully executed in time for preparation of planned meals.
I would read (and retain) fascinating books, fine literature, and be able to recall it for a blog post or a conversation.
My iPod (which is still in its original packaging, never opened) would be loaded with the newest songs, and favorites from my bygone era of the 80s and 90s.
My house would be fully decorated, with complementary artwork and matching lamps in the family room (where there currently are no lamps).
This alternate-persona that I wish I could I be, I think she’s a composite of some of the many women that I know.
My friends, and a few relatives, whose houses are always clean and tidy.
My friend who cooks nutritious, organic, and creative meals often, not just once in a great while.
My friend who regularly is adding this or that perfect item to her house, repainting a room, or rearranging the furniture.
Some of these friends are bloggers I read, or other online friends, that I don’t know outside of the internet, and so I only know what they choose to present. A little bit of art here, some fun cooking here, a room redecoration there.
Others are real-life friends who are, of course, cleaning their house spotless before I arrive for a playdate (just like I do for them).
I have rolled all of these traits into one super-person that I imagine every other woman I know to be. Except me.
This is madness.
Most of the people that I compare myself against, foolishly I might add, are probably doing the same thing to me.
Surely I have an admirable trait or two, at least once in awhile (said sarcastically – I know that I do – my self-esteem isn’t quite scraping the bottom of the barrel).
On the wishlist, I need to do one of two things.
Either make them happen, or be content that they are not.
Either get my house tidied up, or accept daily tidiness is probably overrated.
Either plan more variety in my meals, or be happy that it’s not frozen pizza every day.
An overhaul of my life is not possible, would be doomed to fail. Must start small, if going to start at all.
I should start with the whole tidy house thing. Probably. But my heart’s not in it.
Rather, I’m motivated to spice it up in the kitchen. I love to cook, I do, but it’s something I have just let go of. I mean, I do cook, but I don’t put as much thought and effort into it as I did pre-kids. (Hmm, wonder why…)
Today I borrowed an old favorite cookbook of mine from my mother (I used to use it all the time when my sister and I were roomies – didn’t know my mom had a copy too).
It’s all about baby steps. Start with something I enjoy and maybe other changes will follow suit.
But start small.
Piano lessons have been going very well for little Miss Chee. Very well!
It has been interesting to participate in the lessons with her because I am getting a chance to see how she learns. I don’t know what it’s like for other parents, but I’m not always certain what it is that makes things “click” for Chee in terms of learning what I will loosely term “academics.”
With things like learning numbers and the ABCs, that was just memorization. With counting, it seemed to come naturally after all the modeling that I did. Letters and numbers were just part of our daily life. Other academics, like shapes and colors, all memorization.
Chee has, if nothing else, one hell of a memory.
Over time, I’ve realized she’s a visual learner and I know she’s motivated by letters. I remember trying to teach her the “same/different” concept last summer. I had a workbook and, truthfully, the experience was beyond frustrating. (It doesn’t help that have I little patience.)
Frustrating, that is, until we got to a page where the same/different examples were letters. Suddenly, she got it. She quickly identified which “P” was not like the other “Ps.” And so forth.
The letters. Always the letters. They are the dot connectors in her mind.
And so it goes with learning to play the piano.
Early on Chee learned that her fingers are numbered 1-5. Until recently most of the songs she has learned by playing the numbers. Here’s what I mean.
The top left shows which black keys she should play and which fingers to use. And then the notes themselves are numbered, indicating which finger she should play.
Chee has learned all of the “number” songs (as we call them now) by listening and watching me play and then memorizing.
She was not connecting that she should read the numbered notes and then play them on the keys.
A few weeks ago, Chee learned (fairly quickly I might add) to find the C, D and E keys on the piano. Once she could do that, rather than playing by the numbers, the notes had their corresponding letter on them. Like this:
The notes (as well as the keys) are labeled C, D or E.
Click.
Chee got it. Almost immediately she started reading the notes and looking down at her hands while playing, and then glancing back up at the page to see what comes next.
This was HUGE.
Oh, and see the red arrow pointing to the sticker? The sticker says, “Good Work.” The promise of a Good Work sticker has been uber motivating. She WANTS to earn the “words” sticker and she practices so she can make Miss J “sooo happy” and to get that sticker. First time I’ve ever seen her motivated by a reward. Ever.
We figured something else out, too. When Chee’s teacher first was showing Chee how to play this, she pointed at each individual note and wanted Chee to play them as she read along.
This didn’t work. I suggested that Chee read the line of music first and then play it.
That worked. She read it one time, then played it perfectly.
I think that goes back to that Gestalt style of learning. Much like her echolalic speech where she memorized whole parts of language before breaking it down, the same may very well be true of how she learns music. Or anything for that matter.
She needed to see the line of music, read it, and then she was able to play it.
To me, these are two HUGE things to understand about how her brain works. Exactly what that means for future academics, I’m uncertain.
My plan is to talk with her kindergarten teacher at the beginning of the school year and share this. And offer suggestions (if I can come up with any) on how to incorporate this learning style and her love of letters into her instruction.
On a funny note (ha!), I asked her teacher today how Chee is doing in learning compared to other students she has that are the same age. She said she’s doing very well (ok, I’ll brag, her exact words were, “really, really, really, really good!”). The funny part is that she said that Chee learns the opposite of all her other students. Usually they have no trouble playing the number songs, but they have a hard time reading the notes.
Does that surprise anybody?
That’s my Chee. Definitely doing her own thing.
After several snow day postponements, we finally had the first of two Kindergarten transition meetings. Yesterday’s was to go over what evaluations will be conducted on a Chee, and we also had a IEP progress report.
The progress “report” (which was just her teacher telling me how Chee is doing) was fine. She continues to make progress on her goals. The main concerns remain “the social piece” and completing tasks. The same two concerns from our last meeting.
By “the social piece,” I believe what she means is Chee’s lack of back and forth interaction with her peers. I see the same thing, but I continue to feel that she’ll get there. This is the area that she’s definitely moving at her own pace, following her own path.
By task completion, she is referring to how much prompting Chee needs to finish work such as writing a book. A “book” is usually 3-4 pages and they are looking for mostly pictures, not sentences.
Her teacher did share that it has helped giving her written instructions on the project, broken down into steps, but that someone will still need to come back and remind her to move on to Step 2, now Step 3, etc.
She theorizes that it’s the stimulation in the environment, i.e. the other kids, that keeps her from being able to concentrate and finish. She also feels that is why she is often echolalic in the classroom. That it’s anxiety or over stimulation that makes her unable to verbally retrieve answers. Answers that she (teacher) knows Chee knows.
That does not bode well for Kindergarten. Twice as many kids, 2 fewer teachers.
The good news is that it will not be difficult for them to give Chee an educational diagnosis of Autism so that she can get special ed services. The criteria is written very broadly and includes “the social piece” which is where Chee primarily needs help.
The question I have for the blogiverse is this: If your kid is (or has ever been) in Kindergarten, what kind of supports did he/she get? Which one(s) seemed to really make a difference?
I know every child is different and what works for one does not always work for another. I get that. I’m just trying to figure out what are the options out there.
Right now her current teacher has mentioned having special ed support (meaning the special ed teacher comes into the classroom and helps) during Reading Center and Writing Center. Other than that, I’m not sure.
They were very receptive to my suggestion that she get extra reading comprehension help as she doesn’t need any help in decoding. Everyone agreed that she can read pretty much anything that is put in front of her, but I made a case for providing comprehension “tutoring” (for lack of a better word) so that we are certain she is developing comprehension skills. They said it would not be a problem to write that into the IEP. It might be a pullout by the special ed teacher during Reading Center. I think that’s okay.
The other day I said I was feeling anxious about Kindergarten, but I admit to feeling reassured after our meeting. I said to the group that I read how you really have to advocate for your child to get them support, and they said that you don’t need to do that here. “We want to give help. We really believe in this.” Very reassuring.
There’s a lot yet to be discovered about how Chee learns. I shared my a-ha’s from piano lessons (a post for another day) and that led to a healthy discussion about the Gestalt learning style and how it’s not wrong, just different.
I am cautiously optimistic about how things are going to go. I have NO idea how or when “the social piece” is going to come together for her, and what role school will play in that. Time will tell.
With everything, time will tell.
On a recent Tuesday night, I had the privilege of screening a recently-produced documentary about autism. I take that back. It’s not a documentary about autism, but about a two families living with a child with autism.
One of the biggest complaints I have about “the media” – that is the popular media – is its very limited portrayal of individuals with autism. How many times have we heard someone say that when they hear the term autism, they think of Rain Man?
Most articles I’ve read, from national magazines to my local paper, usually portray autism as a tragedy, focusing mainly on the hardships the family endures, and showing primarily the child’s deficits, rather than strengths.
Or, even worse, it’s depicted as an illness we parents must cure, that has “stolen” our precious child.
Not so with Ethan & Jennifer. First-time filmmaker Jo Sittenfeld has beautifully captured an intimate, and very honest, glimpse into the every day life of a family dealing with autism.
Jennifer is about 9 or 10 (I didn’t catch her age) and is severely affected by autism. She is non-verbal, heavily stims, and requires a feeding tube to administer food as well as medications for aggression and anxiety.
Ethan is 11 and very verbal. He is a happy kid, laughs a lot with his family. He attends public school with an aide and has started beginning band. Playing drums. Throughout the film he’s constantly tapping and humming.
Ethan & Jennifer shows us snapshots of their everyday lives. Jennifer pulling on her mom’s arm because she wants to go for a ride in the car. Ethan on a family vacation and trying to sneak a peek down the front of a girl’s bathing suit top.
Watching the children interact with their family was beautiful. Simply beautiful. Rather than take the typical approach of showing meltdown after meltdown, Sittenfeld showed us many simple moments. The day to day life that so many of us parents with a child on the spectrum can relate to.
Chris, Jennifer’s Mom, putting Jennifer’s shoes on in the morning before school.
Ethan’s dad, David, teaching Ethan how to drill into a piece of wood.
Jennifer excitedly watching her favorite Barney episodes.
Ethan practicing the drums with his headphones on.
We hear a lot from the parents. Chris talks about how at night when she and Jennifer go to bed, Jennifer will grab her face and turn it toward her and they will stare into each other’s eyes.
Chris says, “I can feel her love. There is love there.”
Ethan’s parents have such a loving and affirming approach with their son. They are following the RDI program and are focusing on teaching Ethan to be independent.
David expresses his worry about what will happen to Ethan after Mom and Dad are gone. Will he be able to take care of himself?
Chris worries, too, about her daughter’s future when she turns 18 and Chris places her in residential care. Will she be abused? How would they ever find out because she would never tolerate a physical exam? Should she put her on birth control?
Watching the children, it was easy to pick up on bits and pieces from each child that I see in my own daughter. The way Jennifer perseverates on a particular line from a show and will watch it over and over again. The way Ethan hopped around when excited.
Ethan’s mom, Cammie, says this at the end of the film, about Ethan:
“He is who he is. I don’t want people to think that our life is a tragedy. But I also don’t want them to think it’s no big deal. It is somewhere in the middle.”
I could not agree with Cammie more. That is exactly it.
And that’s exactly why everyone, from families dealing with autism, to the neighbors down the street, and the teachers at school, should see this film.
Jo Sittenfeld produced this 66-minute video as her master’s thesis at the Rhode Island School of Design.
If you would like to arrange a screening of Ethan & Jennifer, you can contact Jo at jo (at) ethanandjenniferfilm (dot) com.
If enough of us do that, maybe it will get picked up by a major distributor. I know that I, for one, would like to see that happen.
About 8 or 9 years ago I participated in a self-help weekend seminar. The vast majority of the weekend is a blur. I remember a lot of meditating and listening to thoughtful, meaningful songs (titles of which escape me). There were small group activities that I don’t remember, and I cannot recall the name or face of a single person in my small group.
For the last activity of the last night, all of the participants played a game. I won’t go in to too much information about the game (although I remember every last detail of it) because we promised not to reveal how it works, but what I will share is my reaction to it.
The facilitators led us through this game, which we played in teams, and then afterward we received a tongue-lashing stern lecture on the outcome of the game.
The lead facilitator then went on to tell us that how we played the game is exactly how we live our life. We were to go home, not speak to anyone, and start writing down our thoughts based on how we played the game, and thus how we live our life.
During the game you are given something like 10 chances to make a choice. To me, it was always obvious what the right choice was. And 9 of the 10 times, I made that choice. One time, however, I thought, “Well, maybe these other people know something I don’t…” and, against my own better judgment, I made a different choice.
Immediately, I knew it was the wrong choice, and for the remaining turns I again listened to my gut and made my own decision.
As I was driving home, I couldn’t even think about what the facilitator wanted us to do. This game was how I lived my life? I didn’t see it at all. I couldn’t.
All I could think about was what a complete and utter loser I was for that one choice I made. I was distraught. I deeply, deeply regretted not listening to my gut, regretted following the crowd. I had failed at the game. What would people think of me, what were people thinking of me for my choice?
Distraught, I tell you. I could not let go of my failure.
I tried to put it out of my mind. I refused to think about it anymore.
As such my mind began to wander to the idea of the game as how you live your life. And it clicked for me.
What I was doing, just then, was exactly how I live my life.
90% of my decisions were good. I was happy with 90% of my choices. By my own standards, I did the “right thing” 9 out of 10 times.
One bad decision, though, and I did nothing but berate myself for it. I was obsessing over what I did wrong. I declared myself a failure in the eyes of my peers (the fellow seminar participants), my family (who weren’t even there), God and the universe. No one could be as stupid as me.
You want to talk about a life changing moment? That was it if ever there was one. In that instant I saw a lifelong pattern of focusing only on my mistakes, my (so-called) failures. Not just focusing on them, but berating and torturing myself far, far beyond the severity of the supposed failure.
It became clear to me how I rarely, if ever, gave myself a pat on the back for what I did right. I saw how I worried unreasonably so about what other people (often strangers or mere acquaintances) think of me.
It was, perhaps, my truest moment of clarity ever.
I don’t think I’ll ever be free from this pattern. I still struggle. But I can almost instantly recognize it’s happening and talk myself down off the ledge of verbal self-abuse.
Remember the mulch moments from last year? That was one of those times. I alluded to it in my post about how I agonized over my “bad” decision. A huge part of the self-flagellation came from my obsessive worry about what friends and neighbors were thinking of ME for putting all that mulch in our backyard.
I still struggle, but I am so much better than I used to be. The frequency is less.
When I find myself beginning to berate or tear myself down because of a mistake or bad decision, I can stop. I will switch to focusing on what I have recently done well. I will congratulate myself for my successes, my good decisions. I work hard to put the decision in perspective.
I still find myself worrying about the opinions of people who’s opinions don’t really matter in the grand scheme of things, but I have learned to disregard that worry. To put it out of my mind. I verbally tell myself, “I don’t care what so and so might think, I barely even know her.” It helps.
I write about this now, today, because I am full of anxiety and uncertainty about Chee and Kindergarten. I need to get my head in a place that allows me to make decisions about her education with confidence, and know that if it doesn’t work out, it’s okay. We just change our plans.
My friend Kate at One More Thing chose for her six-word memoir (remember those?) a turn of phrase that has stuck with me ever since she wrote it. I am stealing her six words and turning it into my motto for the education of Chee.
Make plans, then make new plans.
I want to blog. I do.
I have so many thoughts swirling mumbo jumbo through my head. I noodle them around as I scurry from Valentine party to piano lesson to tumbling class.
Between that and trying to keep up on American Idol (now that the dreadful audition weeks are over I’ll tune in) I’m not finding time to sit and sort my mumbos from my jumbos.
Oh and let’s not forget the dreadful tax fiasco where I somehow lost 3 hours worth of tax preparation work I had done. That ruined an entire night for me.
Since I’m not coherent enough to put together anything decent for you, I’ll let my kids do the talking for me.
(If you read my personal blog, this will be a repeat. There are very few who read both, though.)
My mom was over and having lunch with us.
Chee: “Mommy, can I eat some soup, like Grandma, when I’m a grown up?”
Me: “Yeah, sure. But do you want to try some soup now? I’ll get you a bowl.”
Chee: “No, I’ll just wait till I’m a grown up.”
Ess can be rather bossy from time to time. Recently she was curled up next to me as I was trying to help her back to sleep in the wee hours of the morning. She wanted talk.
“Ess,” I said, “It’s time to go to sleep now. Not time for talking.”
“No!” she shouts. “I don’t want to sweep wif you, Mommy. You go downstairs!” And she points toward the door.
Nice. I’m getting kicked out of my own bed.
I hope to find some time this weekend to put together a post. Most especially the review of a documentary about autism that I was able to see this week.
Stay tuned.
No, I never thought I’d say that to Chee, but yesterday I did. Remarkable.
A little while ago, Mama Mara had a bloggy contest asking us to write a post sharing how far our child has come in some way. I thought about it, but nothing spectacular came to mind. And then I forgot about it. The contest came and went and of course I missed out.
And then yesterday we had an experience that fits just perfectly. A perfect example of just how far Princess Chee (as that’s what she calls herself now) has come.
About 2 years ago, in an effort to help Chee learn to answer questions and communicate with me, I bought Brain Quest for Twos and Threes. Once she got over her intense fascination with eating the foam Max the Monkey, we would work our way through the cards.
It was discouraging, to say the least. She was about 2 1/2 and she could not answer simple questions like, “What is Max doing?” (answer: putting his shoes on) or “Who is sleeping under the bed?” (answer: the cat) or “What is Max wearing?” (answer: pajamas).
These weren’t questions that she was unfamiliar with (we have a cat, she wears pajamas and put her own shoes on). Many times I would rephrase the question as a statement such as “point to who is sleeping under the bed” and she would do that.
However, many (many!) questions she was simply unable to verbally retrieve the answer. Especially action questions.
Eventually I gave up, never bothering to move into the “harder” questions about the seasons or holidays. At the time, she showed no recognition or understanding of winter vs summer, or that Halloween and Easter even existed.
As her language progressed over the next year, question answering remained elusive. It seems that her vocabulary grew and grew, but not so much simple question-answering. There was a period, however, where she seemed to speak entirely in question format (echolalia at its finest).
By the time she turned four last year, however, progress was made, and substantially. At lightening speed she became so communicative. I had stocked up on Brain Quest (thank you, Costco) and Chee pulled the stash out of a drawer one day.
“Let’s do Max the Monkey again!”
I skipped ahead, though, curious to see how she would fare with the more “advanced” (a term I use loosely) games. We have worked our way through Brain Quest Preschool, Brain Quest for Threes and Brain Quest for Kindergarten (she is so into Ryan the Lion now).
Aside: If you’re looking for a way to engage your young child in back and forth dialogue, I think Brain Quest is an excellent option. They really aren’t that hard, and it’s easy to skip over the areas where you know it might be too difficult.
Yesterday, I pulled out Max the Monkey to play with Ess. She did pretty good answering many of the questions (1000 times different than my experience with Chee).
However, Ess couldn’t answer every single question. Chee, who was sitting nearby, upon detecting the slightest pause, decided to jump in and help. She began to answer every question. Immediately. (This made Ess furious who would scream: “No, Chee, you can’t answer that. Go away! Go away!”)
Soon I was a bit irritated, too, this was Ess’ game after all, and Chee would not shut up. And then I said it:
“Chee, stop answering all the questions!!”
I couldn’t believe the words that came out of my mouth!
Who would have ever thought?
There is no doubt, she has come a long, long way.
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