About those social skills

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.

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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.

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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.

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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.

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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!

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

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.

Girls at play

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/

I’m all over the place

Emotionally I have been all over the map lately. I hate feeling this way. One minute I’m up, confident; the next minute, depressed.

I knew the process of evaluating Charlotte so she can receive a diagnosis for services in Kindergarten was going to be tough. On me. I knew it. And yet, that awareness is not making it less tough.

This past week I filled out the Asperger’s Syndrome Diagnostic Scale and something else called Guiding Questions (when considering educational diagnosis of ASD). The school will look at my answers in conjunction with how the teacher has filled it out (I’m sure Charlotte’s raw score will be higher based on the teacher’s observations). (She also has other evaluations scheduled as well.)

After answering “observed” on over half the questions (and especially so in language, social and cognitive) I couldn’t help but think, “Oh my god, that’s it. She has Asperger’s!” Of course, I have no idea what the raw score will actually mean when all is said and done. Maybe she has to have way more than half to be considered Asperger’s. I’ll find out soon enough.

That’s what’s going on this week.

Last week , however, one of the Charlotte’s NT peers from her class, who lives nearby came over for a playdate. The mom stayed, and after awhile we got to chatting about Charlotte and her IEP. After I described some of what the school says they are concerned about, this mom said that she didn’t think Charlotte seemed all that different from her daughter.

I get this all the time from people. They cannot believe she’s going to receive an autism/Asperger’s label from the school, and that she needs help in Kindergarten.

Sometimes, frankly, I can hardly believe it myself.

So last week I was all up – ready to challenge the school on just how it is that Charlotte is so different from her peers.

Then I fill out that darn Asperger’s diagnostic scale and I’m down in the dumps. She is different, I think. She really is.

I know, I know, we’re not supposed to compare our kids. But isn’t that basically what a diagnosis of Autism is, comparing our kid with “normal.” They do “X” number of “not normal” things and therefore the diagnosis fits.

And speaking of IEPs (how’s that for a smooth segue), I don’t get how her biggest delays, which are, reportedly, in social skills, are going to be helped by an IEP. Her teacher tells me the biggest area of concern is her social development – the back and forth peer interaction is limited.

Yet where she thinks she needs IEP help is in task completion. Having someone (the special ed teacher apparently) come in to her class during Reading Center and Writing Center and help her finish her work. She, right now, does not complete her work.

How is that related to social development? Isn’t that an altogether different issue? And isn’t that something that many 5 & 6 year olds will face when they are newly in Kindergarten? And isn’t it the regular teacher’s job to help children finish their work especially in kindergarten?

So then my mind starts wandering to thoughts of, “What aren’t they telling me?” Is her ability to complete a task THAT much worse than every other kid in her class? And if so, why are they saying she’s ready for Kindergarten?

Don’t get me wrong. I’m all for Charlotte getting help if she needs it. I want nothing more than for my child to enjoy school and learn what she’s supposed to learn. But I at least want to understand how the deficit (love that word) areas and the IEP accommodations work together.

Not only are my emotions all over the place, but so is this post.

On the one hand, I look at Charlotte and, in my heart, I know she’s different. She definitely is not developing along the typical path, has uneven development, etc. And I know that her difference falls somewhere near or on the Autism Spectrum.

What I don’t know is how different.

On the flip side, what I don’t understand is how school IEPs address issues of social development. By social development, I believe I mean communication. Friends. Fitting in.

I guess the only answer is to just continue in this process of evaluations and (eventually) goal-setting, and keep asking questions until it makes sense.

And maybe start drinking more. That’ll even out my moods, right?

I love the alphabet, or How I know my kid is hyperlexic

Chee has two favorite websites. Not coincidentally, they are the only two websites she’s allowed to go to. (Well, she thinks she likes eBay and sometimes when we’re walking downstairs in the morning she’ll say, I need to go check on eBay first. Um, you bidding on something??)

Anyway.

Chee’s websites are Starfall and PBSKids.

Starfall is all about teaching kids to read so, of course, it makes sense that she likes it. Of the many games within the site, her favorite thing to ‘play’ is in the Teacher’s section – Starfall ABCs which teaches phonemic awareness. (She had to dig pretty deep to even find that – it’s not in the games section.)

How does this further ‘prove’ her Hyperlexia? Because it’s just the Alphabet and sounds the letters make. It’s not even reading. Her reading skills are quite beyond the highest level on the Starfall site. Yet, she gravites to playing with the Alphabet. Listening to the sounds the letters make, looking at pictures and words that start with each letter.

One of the “symptoms” of Hyperlexia is, as many of us know, intense fascination with letters. It makes me wonder if she’ll always have a love for that. Will it ever translate into a general love of words? Perhaps of writing?

I digress.

On the PBS site, her favorite game, the one she plays the most, is within SuperWhy (a show all about the alphabet, spelling, words and reading). Specifically she likes the Princess Presto (who has Spelling Power) Golden Crown Spelling Bee game.

I haven’t doubted for a long time that Chee fits the profile for Hyperlexia (to a T). Tonight listening to the games she was playing was just another reminder. The good kind of reminder of what an exceptional daughter I have.