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When Charlotte’s school handed down the Asperger’s diagnosis a couple of months ago, it was, as you might recall, no big surprise. However, I have maintained for some time that I’m not convinced Asperger’s fits as she doesn’t seem to show what I thought was considered one of the ‘hallmark’ criteria – an obsessive or special interest.
I’ve since come to understand that a) there really isn’t a hallmark criteria, and b) my understanding of special interest was limited. Special interest is usually described as knowing everything there is to know about a topic, which is usually more than anyone else, and talking incessantly about said topic and, usually, not recognizing when the listener is no longer … listening. Also special interests are often described in terms of collecting. Trains, stuffed animals, acorns, etc.
That does not describe Charlotte at all. First and foremost, she doesn’t have the language skills to bend anyone’s ear prolifically about anything. Secondly, she doesn’t have a subject about which she has acquired immense knowledge. Of course, she’s barely 5. And she does not appear to be a collector.
In the past months, since the Asperger’s was declared, I’ve spent much more time reading up on Aspie stuff. Prior most of my reading centered on Autism and PDD-NOS. I avoided books and articles with an Aspie focus because it never fit Charlotte, particularly with her delayed pragmatic language skills.
Accordingly, I’ve begun to think about Charlotte’s interests and play with a different light cast upon them. And now I have Sarah as comparison and that has shed some light as well. Sarah’s play is quite unlike Charlotte’s, although at the same time I can see the mimicry inevitable between siblings.
Looking back, I still can say that she doesn’t have (has never had) a special topic of interest on which she has acquired immense knowledge, and I can also still say that she does not collect things. What she has done (from a very, very, very young age), and continues to do, is have special (obsessive?) objects of interest, which has now morphed into special (obsessive?) themes of play.
13 months old and with the board book version of her favorite book
Her first special objects of interest (henceforth OOI) were undoubtedly books. Books in general and specific books. Her first beloved book was Hop on Pop by Dr. Seuss. I read it to her for the first time at 6 months of age and she was hooked. She sat through that book, all 72 pages, enthralled from the very first read. Soaking in the words (not the pictures) again and again and again.
For eighteen months straight that was her preferred book – we read it nightly and often many times throughout the day. In short order we had memorized it and just hearing a recitation of the book could calm her down if needed.
While there were many more book-specific interests in succession (after Hop on Pop she moved to Jane’s Animal Expedition, a lift-the-flap board book from the Baby Einstein folks, which was itself an OOI), books in general remained her primary interest. We took a bag of books everywhere we went, and she would be perfectly content. We used to comment that we were the luckiest parents in the world in that, as long as Charlotte had her books, we could go anywhere, do anything. And it was true.
Retrospectively, it’s obvious that her love of books was related to her love of words and letters, which is partly indicative of Hyperlexia, which is the spot on the Autism Spectrum in which Charlotte squarely resides. One could argue that the love, nay, obsession, she had with the alphabet was the overarching OOI and thus equates to Asperger’s, but I’ll leave that argument to someone else as it doesn’t matter to me.
Over the last year, she has lost the obsession with the alphabet, although she still spends a great deal of time reading. Her OOIs have moved into the direction of themes of play. There have been a few successive themes, starting with restaurants (remember her waitress costume of last Halloween) and moving into birthday parties and then princesses and now it’s a combination of princesses and weddings.
Charlotte, in wedding dress and veil, with her Prince and Sarah waving from their carriage
Her play always centers around weddings. Which princess will be marrying which prince, who will be invited to the party, which (of the many) wedding dress will be worn. She and Sarah act out the scenes themselves along with puppeteering the many-sized princesses adorning our playroom floor.
She also is very interested in (real-life) who is married to whom, and she likes to make future predictions about marriage (recently stating that the newborn siblings of 2 different friends would marry when they get older). As for her own wedding, she has eyes only for her prince – Daddy.
Despite my wanting, at times, for all the world to be able to de-label Charlotte (just being honest, folks), instead I find myself in the position of more firmly rooting her in the diagnosis.
Special interests, obsessive objects of interest, I find, are not things to be feared or to be wished away. Rather they are to be embraced. Books provided comfort in times of distress (and she taught herself to read from them). Restaurants and weddings and pretend birthday parties, while repetitive, have all been avenues of blossoming language and social skills. Knowing what she loves makes it so easy to know how to engage with her, almost like the antidote to the ol’ “marked impairment in social skills.”
And most importantly, Charlotte’s objects of interest have brought her much, much happiness, making each reading of Hop on Pop, each new Barbie wedding dress purchased, worth every minute and every penny.
Charlotte and Sarah both completed two weeks of daily swim lessons this summer. For Sarah, my expectations were fairly low. I knew if I didn’t sign her up for the class, she’d bellyache about not being allowed to get in the pool. Most days she started out in the water and participated with the rest of the class, but within about 10 minutes she was done. She did manage to work up the courage to jump off the diving board though – that was quite unexpected!
For Charlotte, I admit that I had pretty high expectations in some ways, and low ones in others. In the end, I had it all wrong.
There were 9 kids in the class and I was expecting, first, that she would be completely distracted. I worried she wouldn’t follow directions, or might float off on her own.
In this way, she surprised me. Every day, she was totally on it. They played games in the water like Red Light/Green Light and Simon Says, and she was 100% engaged. She followed directions – when it was time to kick her feet or blow bubbles or duck her head under water – she was right there. Leading the way, in fact.
All this engagement came in the midst of half the kids screaming their heads off at being in the water. Not Charlotte (or Sarah). She tuned them out and focused on the class.
I couldn’t have been more proud! She exceeded all my expectations socially.
Where my expectations were high was with the skill of swimming. Prior to starting lessons, due to the sheer fact that we were at the swim club we joined frequently, Charlotte was, it seemed, turning into a fish. Completely on her own she began jumping into the pool by herself (last year too afraid to do that), fully submerging her head, “swimming” underwater in the kiddie pool.
I fully expected that coming out of lessons she would have nailed it. She would be a swimmer.
Not so, friends.
Swimming is comprised of three things: big arm strokes, kicking your legs, and putting your face in the water. All at the same time.
She can do any combination of two of those things, but not all three at once.
She took one half-hour private lesson as I thought the one-on-one instruction would help things click for her. It was the most frustrating thing for me to watch. Individually she is awesome at each skill. But she simply cannot put all three together at once.
How reflective of life is that in general? Conversation with a friend requires listening, processing and responding. For the longest time, she couldn’t do it at all. She’d listen but not process, so her response would be completely off topic. Or she’d listen and process, but couldn’t come up with a response in a reasonable amount of time (or at all).
Throw in a variable like eating or any number of distractions, and we’re down to just one side of the triangle operating.
Fortunately, through practice and just plain old growing up, she can maintain conversations for a few strokes before giving out. I suspect that she will continue to improve.
This also plays out in her fine motor skills. With writing she has to grip the pencil a certain way (“pinch and shelf”), keep her wrist down and know how to make the letter. Rarely does that trifecta ever happen. The wrist is up but her grip is correct and her letters are perfect. Her letters are illegible but her wrist is down and she’s holding the pencil right.
Times like these force me to acknowledge that although her Asperger’s is on the so-called mild side of things, it makes its presence known. In small ways like taking longer to learn how to swim. In larger ways like appearing to ignore a friend.
What impresses me the most about Charlotte, though, is how she never quits trying. She loves to write. She never gets annoyed when I say, “Pinch and shelf” or “Put your wrist down.”
She never gives up on talking. For a kid who had to really learn how to have a conversation, and half the time isn’t really doing it, she never stops talking. Never.
And so it goes with swimming. She’s at the pool right now practicing.
“What are you going to practice, Charlotte?” I ask.
“Kick my legs!”
“And?”
“Put my face in the water!”
“And?”
“Big swimmy arms! All at the same time!!”
That’s right, my girl. I know you can do it.
I haven’t been feeling terribly posty lately.
A multitude of reasons exist for why, but at its core it is has to do with connecting.
Let’s see if I can tie this all together to resemble something cohesive.
Something I have struggled with for a long time is that I often don’t feel connected to what I’m doing at the moment. I have many times remarked that I feel like an observer of my own life.
It’s hard for me to give examples of what that looks like. I’m not completely disconnected, nor do I feel even a little disconnected at all times. There are times when I feel very present.
One of the ways I recognize that I am disconnected, however, is that I have a very difficult time remembering details of events, important conversations, and most importantly I think, is that I cannot remember how things make me feel.
A strong sense of how disconnected I feel really hit me while reading this lovely life by Vicki Forman (a powerful memoir of premature motherhood that I encourage you all to read if you haven’t already).
One of the things that impressed me the most about the memoir was how Vicki was so aware of her feelings during the tragic events. I suspect that’s part of what makes her a gifted writer. Connecting to her experiences. You can have all the writing skills in the world, but if you aren’t connected to and fully experiencing your own life, what is there to write about?
There are many bloggers out there who are outstanding at connecting to what’s happening in their daily life. diary of a mom, like a shark, Autism in a Word and (a new-to-me one) Floortime Lite Mama instantly come to mind, but there are others.
It’s not really about blogging, though, is it? No, it’s about finding the connections. It’s about more fully experiencing my own life. Not just the moments with the kids, but also the moments that make up ALL of my life. My friendships, my home, my extended family.
Because writing is what I love, and because it’s the only thing at which think I’m any good (and not even very good at that), I’ve taken up journaling again. Writing daily while fresh is going to be the first step at helping me reconnect with my own life.
I was an avid journaler from about age 13, when my mom bought me my first journal, all the way through age 30. Journaling began to dwindle after I became engaged. I have barely journaled at all in my 8 years of marriage.
Ironic, really, since the last 8 years have been the most interesting and journal-worthy of all.
My old journals are, to tell the truth, almost embarrassing. I shake my head at how immature I sounded. My main focus was writing about the boys, guys and eventually men I was interested in. I wrote and wrote and wrote about my crushes, my dates, my disappointments, my loves.
(Perhaps all that writing was a good thing, though, as I ended up with an amazing husband and we have a solid, happy marriage. Maybe all that processing helped me in some small way.)
I’m hoping that by taking the time to journal and spend time writing for just myself, and not with an audience in mind, I will begin to fully connect with my very own life and not feel like just an observer.
Eventually, I’d like to see that connectedness translated into more thoughtful and thought-provoking writing.
If that never happens, that’s okay. It is the journey that matters.
The days leading up to Charlotte’s 5th birthday had me mentally scribing a post about what a poised, confident, social child she has become. She was a perfect hostess at her party on Saturday, and Sunday was another spectacular day.
Monday, her actual birthday, I was practially giddy with pride from what I witnessed throughout the day.
First thing Monday morning she and Sarah started group swim lessons. With 9 kids in the group, I wasn’t sure how Charlotte would fare. Group situations seem to find her easily distracted and clingy to me.
Not so with swim lessons. She was on top of her game. Focused, following directions, and enthusiastic. She and Sarah were 2 of only 3 swimmers who didn’t cry throughout the whole thing (even the criers didn’t distract her).
From there we quick-transitioned at home (change of clothes, comb out the tangly hair, quick but substantial snack) and headed off to day one of Steel Drum Camp. Here Charlotte was one of 5 in the group. An easy going teacher, a fun new instrument and the up-tempo-but-easy reggae background music all helped make for another great experience.
Next it was lunch in the car and then our usual Monday OT session where her therapist observed she was “totally on it today.” No echolalia, following 4-step directions, unscripted imaginative play.
If this is five, I thought to myself, I love it. Five can stick around!
As the final celebratory act of her birthday, we took a little family trip over to one of Charlotte’s favorite places for ice cream.
It had been some time since she’d had any dairy outside of cheese. And it was her birthday. And I had a coupon. And she loves ice cream. So, a birthday treat.
And so began the slide.
Tuesday she was distracted during swim lessons, she got in trouble for not listening at the camp, there was an excessive amount of screaming at Sarah and me throughout the day. The sisters fought and fought far more than we’d seen in the previous few weeks.
Wednesday she began the high level of sensory seeking. Riding home in the car she was attempting to hang upside down in her seat. She was somewhat emotional and clingy with her dad. Transitions were a struggle.
Thursday things picked up a bit, helped in part, I believe, by the 2-hour group OT session that morning. Camp was successfully managed despite a substitute teacher (one who Charlotte knows and is not particularly fond of). We ended up with a late lunch at Chik-Fil-A where I heard her initiate conversation with another child (seldom witnessed heretofore).
Friday, despite barely handling the huge disappointment at the hands of the swim instructors who didn’t plan for a diving board jump, was better. Fully in upswing mode now.
Friday night she performed beautifully in a steel drum concert at a local park. In front of an audience and with multiple distractions to boot. We the left the park (which was celebrating its birthday) without the celebratory cupcake.
“Oh no! I forgot my cupcake! We have to go back! We have to go back!”
Oops.
We started looking for an open bakery where we might find a substitute cupcake. Bakeries are not open at 8:30 at night.
I made a proposal. G’s is a local ice cream shop that also has baked goods. It’s one of Charlotte’s favorite places. Not willing to risk another ice cream debacle, I offered that we could go there, but only to get a cupcake, no ice cream.
“If you ask for ice cream, and throw a fit, we’ll just leave without even getting a cupcake.”
She repeated that mantra for the duration of the drive. It must have worked because she didn’t so much as glance in the direction of the ice cream counter.
And thus ended the first 5 days of five.
Lessons were learned.
- Back-to-back activities are probably not the smartest thing to do.
- No matter how good it sounds at the moment, stay the hell away from ice cream.
We were up. We were down. And then, importantly, we came back up.
If this is five, I think to myself, I love it! Five can stick around!
There was the princess herself,
along with some royal friends,
a fun, new game,
a pinata of course,
the "Beautiful Bride" cake she requested,
more than a few presents,
equaled one happy, quite social, little girl who celebrated the big Numero 5!
In the world of quirky, autistic language, we are presently living in the land of questions.
Not the annoying curious ones like, “Why is the sun yellow?” and “Why do birds fly?” that those typical four and five year old kids come up with. Nope. No, we live in a land of the inane questions.
Who is that?
That’s Sarah.
What is she doing?
She’s sleeping.
In the bathroom after piano lesson and at Red Robin and at the swim club: What is that?
That’s a potty.
What is that?
That’s a sink.
What is that?
That’s the wall?
What are we in?
We’re in the bathroom.
Sometimes it gets interesting.
Do you love me?
Do I love you?
Do I want to eat chicken for lunch?
Do I need to go potty?
Does Belle want to marry Gaston or the Beast?
Does she love Gaston? or does she love the Beast?
As one can imagine, I tire of the interrogations.
Who do I want to give some hay to?
Silence.
Mommy, who wants some hay?
Mom-meeeee! Who?! Wants?! Hay?!
Charlotte, you know who you want to give some hay to. Just go give him some.
A new strategy today.
She is currently very much into makes and models of cars.
Is that a CHEVROLET??
Charlotte, you know what kind of car it is. So you can say, Hey look, there’s a Chevrolet!
What is my sister got?
Charlotte, you know what she has. You can say, Hey, look, Sarah’s playing with her baby doll!
I’ll probably regret this strategy. Before you know it, everything will be “hey look.” “Hey look!” “Hey look!”
Still. I have to try something to break her off incessant inane questioning. Otherwise…
Hey, look, is that another beer in my hand?
Sunday night, Charlotte Snow White sits atop her swingset clubhouse castle surveying her yard domain.
Suddenly she sees the moon, big and round, hanging low in the sky.
“Guess what I see! Do you know what it is? Do you see it?”
The rest of her family kingdom could not see it from their humble positions on the ground.
After moving around a tree and much ducking and bobbing of heads, however, they managed to see it, the moon, glorious moon.
Charlotte Snow White descends from on high with a grand announcement.
“I’m going to go put my space costume on.”
She goes into the house. A few minutes later a voice is heard calling down.
“Hey, guys, can you see me?”
The Queen Mother (her grandmother) calls out: “Where are you, Charlotte?”
“Up here. I’m in my room. I’m putting my space costume on. Can you see me?”
Soon Charlotte an astronaut returns from her mission.
Wearing fleece pajamas a shiny spacesuit, she treated us to a special gift from outer space – sparklers!
My negative-ish last two posts do not sit well with me. Yes, I worry. Yes, I doubt and question. But I try my darndest not to let that consume me, or my blog.
I do so appreciate all the comments of support and empathy. And the jokes to cheer me up too!
Let’s not linger in the worry, though. Let’s move straight into the good stuff. The beauty and joy and love of children. My children. Our children. The typical ones and the special needs kiddos.
Charlotte’s language continues to blossom. Every day we gasp at something new she articulates. A new understanding she seems to have.
She is beginning to ask so many more questions of us, beyond “What are you doing?”
There’s “Why are you doing that?” and “What did you just do?” She asks about our plans for the weekend, and inquires what’s for dinner later. It’s like she’s finally taking an active interest in her own life.
Conversational skills are building, although at times it is frustrating when she won’t answer the simplest of questions. And she still is not great at listening, as in “minding” us, you know – being obedient (I am not a fan of that word).
My husband and I were asking ourselves tonight regarding the not listening -is that an ASD thing, or is it just Charlotte? She decided she wanted to go upstairs tonight (while we were sitting outside eating dinner) and get a bandaid. And no amount of firmly telling her do not go upstairs, stay outside worked. Neither did threat of consequence.
She just went on up. This happens frequently. It can be so infuriating.
Lately, though, (knock on wood) that has been the only frustrating thing. Being 100% dairy and soy free seems to have taken care of the screaming and aggression. Thank the heavens as that was really hard to deal with.
Sarah astounds us as well too. Her command of language is superior. A few weeks ago, she lost me at where we take weekly tumbling. She was putting her shoes on, so I ducked into the bathroom to check on Charlotte. When I came out 5 seconds later, Sarah had run off in the opposite direction, crying, and looking for me.
She said to me: “I looked up and you were gone. I looked and looked for you and I was crying. Then the teacher picked me up and she gave me to you. Don’t get lost again, Mommy.”
Every week when we walk into tumbling she looks me in the eye and says, “Don’t get lost, Mommy. Okay?”
Have I mentioned how much I love where we take tumbling? Just let them know when you sign up that your kid has Autism, and they will provide an extra instructor if needed.
That has been helpful for us. Sometimes Charlotte gets a little overwhelmed when we go in there. Last week she cried and said she wanted to be 2 so she could be in the 2 year old class with me.
One of the floating instructors walked around with her for a few minutes and then she was fine to join her fellow PreK tumblers.
I love watching her from across the room. I see her standing in line patiently, trying some crazy new move, learning the Chicken Dance. That may be the cutest thing ever to watch.
Sarah, equally, is a joy to watch in tumbling – a rock star. She is fearless, and has such balance and strength and coordination. She loves the physical aspect – climbing, jumping, rolling.
Begin sappiness.
It’s marvelous parenting two such opposite children. I feel blessed by God to have been given these gifts.
End sappiness.
Happy Independence Day.
Bless me, readers, for I have sinned.
Okay, sinned may be a bit dramatic, but I am not being honest.
About two things, somewhat related.
First, about my extremely negative attitude.
Second, about a little thought that at times takes hold of my mind.
The negative attitude is about Kindergarten. I am just convinced that it’s going to be a terrible experience for Charlotte. I am dreading the start of school.
Dreading it because I don’t want to go through this. I want everything to be fine. I want it to be a positive experience for her. For me.
But I’m just so afraid that she’s going to flounder. That her teacher is not going to “get” her. Won’t see her capabilities and her potential. That special ed will see her as “Asperger’s” and think they know what she needs without really trying to understand her.
I’m having a hard time being hopeful and optimistic. I believe in Charlotte, no doubt, but it’s the school that I have little faith in.
So there’s that negative attitude that I can’t seem to shake. Not a good thing.
And then there’s the thought that takes hold in my head and won’t let go.
I’m not convinced Charlotte fits the Asperger’s label. Sometimes I am, but sometimes I’m not.
And I hate that. I want to hold a firm belief either way. Either she is or isn’t Autistic.
Some things totally fit her. Other things not so much. Socially she’s “got it,” but where’s her special interest? Where’s the repetitive behavior? Isn’t that part and parcel to Autism/Asperger’s.
Apparently I have an insatiable need to define things. I’m not good with ambiguity.
To me, she either IS or ISN’T Autistic.
Why I have this need for a definitive answer, I know not.
I do know, however, that it’s not doing me any good.
So there you have it, reader-friends, my confessional.
I have a piss poor attitude about school and I’m still floating in and out of denial.
Confession over.
Now cheer me up.
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