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Is this my blog? Is this a post? July 8, 2009

Posted by Good Fountain in Special Needs.
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7 comments

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?

Princess astronaut July 6, 2009

Posted by Good Fountain in Just adorable.
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5 comments

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!

July4th 104

Back to our regular programming July 3, 2009

Posted by Good Fountain in Diet, Just adorable, Special Needs.
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7 comments

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.

Confessional July 1, 2009

Posted by Good Fountain in Special Needs.
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15 comments

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.

About those social skills June 26, 2009

Posted by Good Fountain in Social stuff.
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16 comments

For some time now I have been reading several blogs by adults on the Autism Spectrum. All are fabulous blogs by fabulous writers and give me, a parent of a child with ASD, much to think about.

A theme I think that I very clearly hear from these adults has to do with pretending. Pretending to be neurotypical. Pretending to fit in.

There is also the message of don’t think of me as broken, just different.

***

I started reading Tony Attwood’s book The Complete Guide to Asperger’s Syndrome (admittedly I first went straight to the index and looked up everywhere ‘girls with Aspergers’ is mentioned).

He says that girls are often harder to diagnose because they do such a good job of mimicking the social situations they see. In essence, pretending to be normal.

***

For 3 days this week, there was an extra 5-year-old girl and 6-year-old boy in our house (plus several extra adults too). Other than taking frequent breaks, Charlotte did fine playing with them.

There’s no doubting there was a difference between her and her two NT cousins.

She’s not as fluid in conversation as they are, and she certainly didn’t maintain the social energy and connections as long as they did. But there were no negatives that I witnessed.

If her cousins were ever frustrated with her, it was likely because she didn’t answer a question or because she lost interest in a game and wandered off.

Charlotte didn’t appear to annoy them (that I saw), and she didn’t appear to be forcing herself to do anything she didn’t want to do.

How she handled herself for the 3  days sounds like the way the adult Aspie bloggers I read would handle a similar experience. Needed alone time, preferred the familiarity of those she is closest to, and had trouble participating in larger group conversations.

I never forced her to go and play with her cousins. I figured if she needed a break, she needed a break.

Sometimes I encouraged her, such as when the lightening bugs came out and the other kids started noticing them. I suggested to Charlotte that we go out and catch some. She had been chilling (in my lap, entire body wrapped in a blanket). Very quickly the 4 of them were running around the yard together pointing out fireflies and trying to scoop them up.

***

This week, Charlotte began a language-based OT group, aka Social Skills group.

I ask myself – what is the real purpose of this?

What is it that Charlotte should be doing differently? We witnessed no meltdowns, no unfriendly interactions. All was good between the cousins. Her peers.

She appeared to manage herself beautifully. By the last morning they were here, she was spent. She woke up and asked if she could watch a movie first thing. This was a little girl who knew what she needed, and what she couldn’t handle.

And, yes, I let her watch a movie first thing while everyone else went about doing whatever they wanted to do.

***

Where am I going with all this?

I don’t want Charlotte to grow up thinking that she has to pretend to be normal. Pretend that she has boundless energy for social interaction. Feel that she must force herself to maintain conversation when she’d rather be wrapped up in a blanket.

Does she really need to attend social skills “training” to learn how to carry on a conversation? To learn how to “manage herself” in a group?

It feels like I’m sanctioning the notion of pretending to be normal.

It’s a conflicting thing. I want my daughter to be happy on her own terms. To feel free to be herself.

I also want her to have friends and engage with others.

But shouldn’t that be on her own terms as well?

I don’t have any grand conclusions here.

Would love to hear from adults on the spectrum and other parents your take on my ramblings.

Swimming! June 17, 2009

Posted by Good Fountain in Social stuff, The kids.
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The forecast called for thunderstorms today and boy was I worried. The first thing out of Charlotte’s mouth this morning was asking if we can go swimming.

After lunch if it’s not raining, my dear.

About an hour after breakfast she asked if she can have her lunch now.

Doesn’t quite work that way, my dear.

By the time tumbling was over, the clouds had parted and the sun was shining.

Off we went for our first swim club outing.

We only stayed about an hour and half because Charlotte has piano lesson on Wednesday afternoons.

There was much excitement. After many fake-outs, Sarah finally got in the water and splashed around. She waved her arms in circles and shouted, “I’m swimming! I’m swimming!”

She retrieved a ball that a “widdle baby” repeatedly tossed into the pool. A fun game they had going.

Charlotte showed off her whole-head- under-water skill that she’s practiced in the bathtub time and again. And she jumped into the pool from the edge (no amount of encouragement could inspire that bravery last year). There was no encouragement needed – I looked up and she was doing it.

What happened to the scared little girl from last summer?

I briefly chatted with a mom who has an Autistic son the same age as Charlotte.

I watched as her son played games back and forth with another little boy – much as I hope to see Charlotte doing some time.

Actually she did make a friend. She was about 3, maybe, and she and Charlotte went to play on the playground toys. Later Charlotte came up to me, “Did you see me talking to that little girl, Mommy? I was talking to her. She’s my friend.”

My sister and niece are visiting so we had a special ice cream outing afterwards. Of course I think I told Charlotte a thousand times that we will not be getting ice cream every time we leave the pool. I just wouldn’t want her to get that idea stuck in her head, if you know what I mean (and I think some of you do). Ahem.

All in all a good outing for the Goodfountains. We’ll be going back tomorrow!

Taking the plunge, and diving in June 12, 2009

Posted by Good Fountain in Social stuff.
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Two big decisions this week.

Numero Uno I am taking the plunge and have scheduled a full neuropsychological evaluation on Charlotte. It’s been in the back of my mind for some time to do it, but I was never certain on exactly when to pursue. At what age would it be best for Charlotte in terms of getting the most out of the testing.

No time like the present, I say.

Little things here and there, nothing significant, have spurred me into moving forward on this. Wondering if she has a learning disorder of some sort (some say Hyperlexia is a language learning disorder). Wondering if her Working Memory is weak.

I’m not convinced that her Asperger’s diagnosis (which I am not entirely sure even fits – PDD-NOS fits her more, I think) is the whole picture of what’s going on with her.

For me, this isn’t about affirming her ASD diagnosis, or un-diagnosing her. It’s more about learning about how her brain operates. Something’s going on there that isn’t typical.

We begin the process mid-August and should conclude in 4-5 months. Stay tuned.

Numero Dos We’re joining a swim club. This is a big deal for me. I’m not a good group social person. I have such a hard time connecting in groups. Everything I’ve ever joined, it seems, from churches to social groups to clubs has always been a let down. Voluntary social activities and me just don’t go well together. I don’t connect with people in groups.

I’m pretty sure it’s me and some kind of vibe I put off, but in all honesty – I have no idea what the vibe is. I’m not particularly shy, and I’m a decent conversationalist. Do I scowl all the time? Do I look like a serial killer?

Forced social activities, like when I worked, are fine. I do great there. And 1-on-1 friendships – I’m a champ. I have good, close friends and am even known to make new ones.

But parties, clubs, volunteer groups – nada. Never works out.

Yet I press on. The swim club. It’s a mile and a half from home which is a huge plus. It’s small, family-oriented. I have two reports of it being non-clicky, so that’s at least a little plus.

I stopped by to look at the place yesterday and ended up talking to a member for a bit (pool was closed, just private swim lessons going on). What sold me was when she rattled off the names of 5 girls who will be going to Kindergarten at Charlotte’s school this fall.

Remember I wrote that Charlotte has to be around kids for a long time before she feels comfortable enought to interact with them? I got to thinking what if this was a way for her to start connecting with kids. She’d be around them frequently and for extended times (a couple of hours at the pool several days a week) – giving her a chance to get comfortable enough to start interacting.

And then she’d see these kids around school too. Not just in Kindergarten, but beyond.

More than anything what Charlotte needs is social interaction opportunities (what’s the point of social skills group if she doesn’t have anywhere to practice).

(Let’s not forget the wonder that is swimming for a kid with sensory processing disorder either.)

Despite my hesitation due to my history of failed group socialization, I’m diving in. This isn’t about me, it’s about them. And their love of swimming. And my need to keep us busy and active all summer long.

I’m 99% positive the girls will love it. They love swimming.

Sarah will make friends.

Charlotte might.

And if I don’t, well, I’ll just catch up on my reading.

“Wish I Were A Fish” June 10, 2009

Posted by Good Fountain in Just adorable, Special Needs.
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cupcakes 033This past weekend Charlotte participated in her first piano recital.

I have to tell you that it went smashing (or would that be smashingly?).

She was all smiles walking up on the stage.  She played her piece perfect (without the accompanying silliness we’d been seeing the last couple of weeks).

Midway through she paused, mischievous grin on her face,  and looked out at the audience, as though just realizing they were there, but she continued on playing.

cupcakes 034Her bow couldn’t have been any cuter – eyes squeezed tightly shut, a half smile/half smirk played on her lips.

The most shocking part of the experience was that she sat through the ENTIRE recital quietly in her seat all the way on the other side of the room from us. Quietly for a little over an hour. Quite impressive for any four-year-old, let alone one that falls on the Spectrum.

Afterward all the participants were called up to stage for a group picture. And this is when the tears started.

Perhaps it’s when she saw me. Perhaps it was all the jostling and rearranging of people for the photo. Perhaps it was the hour and fifteen minutes of Utmost Perfect Behavior that did her in.

Probably a little bit of all three of those.

After a good cry, some extra tight hugs and a chocolate chip cookie – all was back to normal.

(Until we got in the car and the tears started all over again, but I think she just needed to release.)

post recital 002I cannot conclude this post without mentioning what a complete angel Sarah was. She sat through the whole recital as well (again, over an hour — and she’s TWO). She clapped when it was time to clap, every single time.

Her parents, who were complete nincompoops, didn’t bring a snack or books or anything to keep her occupied. But Grandma had Goldfish, we found a book in the aisle and she made the most out of the Event Program.

A truly good day for the Goodfountains.

Girls at play June 2, 2009

Posted by Good Fountain in Social stuff, Special Needs.
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It’s been interesting to observe differences in the way Charlotte and Sarah play and interact with other children.

Sarah is more outgoing and will play with other kids at the park or store. Charlotte takes a long, long, long time to talk to kids she doesn’t know. Most of the time, she never does.

(She’s been taking piano lessons for 7+ months and just a few weeks ago finally greeted and introduced herself to a boy who takes lessons there at the same time. Every week for SEVEN months we have seen this kid and now she finally talks to him.)

The three of us went shopping today and I observed what I think is fairly typical Goodfountain girls interactions.

We were at Gymboree (being a partly frugal mom and taking advantage of 30% off storewide sale) and both girls parked their bottoms near the back of the store by the TV. For a while, the only other customers were pushing strollers with infants.

Charlotte and Sarah both interacted with the Moms with the strollers. Oohing and ahhing over the cuteness of their babies. Generally being rather cute themselves. Charlotte was talkative, sweet, fully engaged.

Eventually a little girl, about 4-ish, showed up and just kinda hung around back by them waiting, I imagine, for one of them to start talking to her.

Eventually Sarah did. They kinda played peek a boo behind some clothes. What started out cute eventually turned into the other child trying to convince Sarah to try on boys’ infant onesies (fortunately I caught Sarah before she had unleashed the Naked Monster).

They were quite a duo, but mostly kept it pretty tame. Sarah wisely heeded my rule of No Throwing Clothes on the Floor lest she not be allowed to have popcorn at Target (our next stop).

I wasn’t back there the whole time, but I never saw Charlotte speak one word to this girl. Not one word.

She was either watching the TV or browsing the racks and reading the sayings printed on the shirts. Once she thought she “losted” me and was very upset, but she recovered herself. The last few times I checked on her before we left, she was sitting with her head on her knees, hands covering her face.

Sarah, meanwhile, was having the time of her life playing with her new little friend.

Pretty big difference, huh?

As I reflect on this I wonder: Am I supposed to feel sad for Charlotte because she struggles to communicate with kids her own age?

Because, to tell the truth, I didn’t see any struggling going on. She communicated FINE with the adults. Appropriate, not scripting, not repeating herself.

She appeared to have zero interest in the little girl that Sarah played with.

I keep asking myself, “Is this a bad thing?”

No, it’s not typical but is it wrong? Is it anything for me to be sad about?

She seemed content as could be. You know what she was doing? She was playing the piano. Her fingers were tapping along the sides of the chair playing the various songs she knows.

(Air piano – I could write a whole post about the constant piano playing she does. Everywhere, all the time. No piano required.)

As for her head being down and her hands covering her face, I think that was kind of like Kendall at the pool the other day. She was just done. We’d been there close to an hour, the tiny store was starting to fill up (crowd) and Charlotte was just done. Happy was I that she found a way to deal with it rather than have a meltdown.

It’s been interesting to observe these two girls of mine at play. I knew it would happen at some point that Sarah would outpace Charlotte in the social development arena. I have been kind of watching for it even.

I’ve been watching Charlotte closely when I see this happening and what I’m seeing does not upset me, or scare me, or worry me for her future. She seems perfectly happy to do be doing her own thing in those situations.

And that’s OK.

She plays with and is conversant with kids she knows. Not so much with those she doesn’t. It takes her longer to get to know someone before she will start to engage.

Maybe it’s Asperger’s. Maybe it’s her personality.

Maybe it doesn’t matter.

http://jesswilson.wordpress.com/2009/06/01/tested/

Dear Sarah May 31, 2009

Posted by Good Fountain in Just adorable.
9 comments

Love, I think perhaps your Dad and I have sent you some mixed messages. It isn’t fair to you that we’re inconsistent like this – how will you ever really learn what is okay and what’s not?

Please, let me try to clear things up a bit.

On using the potty. I know you’re scared to use the toilet without a potty insert. And I know you are a big girl and think that peeing in diapers is for babies. However, that one day recently when we let you pee in Grandma’s bathtub since you were afraid of the toilet nor did you want to pee in a diaper – that was a one time thing.

It’s not OK to pee in the bathtub anymore. Especially especially the bathtubs of our friends’ houses.

Please go back to using the toilet.

(And forget about the floor.)

On being naked. I don’t know where you came up with the idea of being the Naked Monster, but it is pretty funny. Mom and Dad can’t help but giggle when you strip down to nothing and shout, “I’m the naked monster, roooaaaar!!”

However, that is not something you do in the front yard. I know, I know we always laugh inside and chase after the little naked monster, but it’s just not the same thing when we’re out on the street.

Naked Monster needs to stay inside the house.

I hope this note clears things up for you a bit.

Love,

Mom and Dad