In his own words

"i like thomas and freinds and i like spongebob i have thomas toys i also like angry birds"

~ found on Bitty's "user information" on the flipnote website. Too cute (and quite fitting, no?) Just had to share.

:)

On a related note, here are a couple of his latest flipnotes.

He figured out how to take sequential pictures and make movie-style flipnotes with them. These are all pictuers of his toys. Pretty creative if you ask me!





This one he narrated himself, I love his voice (and wow he is speaking more and more clearly)! He's quoting a lot of it from "Oliver the Western Engine" in which Oliver gets stuck in a turntable well. I have to give him credit, he couldn't find his wooden Oliver train so he improvised and used another one to play the role of Oliver in his pictures. I was impressed that although he was a little stressed out about it (and keeps asking me where Oliver is, unfortunately I don't have a clue), he was able to come up with his own workaround.




(he changed his username to "spike fan," I don't really know why...)

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Overheard...

Various conversations and comments from the last couple of weeks:


~~~~~~~~~~~

Cuddlebug (reading billboard): 'Red Bull gives you wings'... I wish that was true, because I really want to fly...

~~~~~~~~~~~

Bearhug: Time machines won't be invented in my lifetime, because if they were I would've come back to say hi to myself by now. I would do it at this time because right now is when I'm interested in time machines.

Hard to argue with his logic, huh? :)

~~~~~~~~~~~

Bearhug: "Do you know where I can learn telekinesis?"

me: No...

Bearhug: "Daaaarrrnn!!"

lol :)

~~~~~~~~~~~

Cuddlebug: "I recommend you don't ever lick the bottom of my shoes. (pause) I don't use my hands to flush the handles of public toilets, I use my shoes."

Good thing I don't make a habit of licking the bottom of his shoes... not sure why he thought to tell me that. Eewww :/

~~~~~~~~~~~

Bitty's latest thing is "are you just kidding?" whenever we say something he doesn't agree with or answer a question in a way that he finds unacceptable. Sometimes we just can't convince him otherwise, so we finally have to go with, "uh, yeah, we were just kidding..." ;)

~~~~~~~~~~~

Bitty: I wike Thomas, do I? Because he's awesome!!! But [CB & BH] don' fink he's awesome do they? Is Thomas awesome? Am I seven to wike Thomas?

Cuddlebug and Bearhug have been giving him a hard time about the fact that he likes Thomas ("Thomas is for babies!" "I not a baby! I'm a big boy!") but as I keep reminding them, they were really into Thomas when they were 7 too, so Thomas IS for big boys.

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Biology, according to Bitty

Bitty often asks me out of the blue what certain words mean. Because of his language difficulties, he doesn't always pick up on "context clues" and he has a strong preference for concrete, easy-to-visualize explanations.

I do my best, but my walking-dictionary-on-the-fly skills sometimes fall short.

Bitty: What does "born" mean?

me: You mean like when babies are born?

Bitty: When I was born.

me: It means you came out of my tummy. Babies are in their mommies' tummies before they are born.

Bitty: I was in your tummy?

me: Yep

Bitty: Did you eat me?

(groan, HOW did I not see that one coming?!)

me: No, honey, babies grow in their mommies' tummies and when they are big enough to be born, they come out of the tummies.

Bitty: I don't want to go in your tummy.

me: That's ok, because you're already born. You've been out of my tummy since you were a little baby.

Bitty: Was I born?

me: Yes

Bitty: So I not in your tummy anymore?

me: No, you're a big boy now, way too big to be in my tummy.

Bitty: Do mommies eat da babies? To put dem in da tummies?

me: *NO*, no one eats the babies, they're in the tummies to grow.

Having been through some of these discussions w/ Cuddlebug and Bearhug, I had my explanation all ready to go as to how babies get IN and OUT of tummies, but he wasn't having it (after all, when you're convinced you already know something, who needs mom trying to explain it to you, right?). So I tried to change the subject.

I had a lightbulb moment yesterday when I realized that his coming to that conclusion probably had something to do with this little chat earlier that same day as we were eating lunch:

Bitty: Does my tummy have a mouf?

me: No, the food goes from your mouth, down to your tummy.

Bitty: Where does da food go after da tummy? to da WEE-WEEEE??

(yeah, I'm sure the elderly couple behind us enjoyed that little anatomy lesson, lol)

Two completely unrelated topics in my mind, but in hindsight I guess I can see how he put two and two together... :/

He's asked me about it again a few times since then, at random moments:

Bitty: Mom? I don't want to be in your tummy.

me: I know, don't worry you're not going to be in my tummy anymore.

Bitty: Because I was born, was I?

me: Yep.

Bitty: Are you gonna eat me? To put me in your tummy?

me: NNOOO, no I'm not.

I'm thinking maybe I should have dh add a little biology to the mix for his summer homeschool lessons - to illustrate the difference between the digestive system and the reproductive system. Maybe the visuals will help.

In the meantime, I just hope he doesn't decide to start asking questions like that the next time he sees a pregnant woman (sigh).

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School / IEP update for Bitty

A while back I posted about some of the difficulties Bitty has been having in school.

Shortly before Thanksgiving, we had a meeting with the school to review his IEP and discuss changes to help better meet his needs. We learned that he was basically requiring almost constant one-on-one support from the resource teacher / parapros in his class which isn't really what they are set up to do. The challenge comes down to communication - if the subject is straightforward and doesn't require much verbal explanation he does great. Spelling, for example. He is a spelling kung fu master :). On the other hand, any subjects or new topics that require verbal explanation are quite difficult, not because he can't understand the subject matter, but because he struggles with language. He's a fast learner and that has helped him to keep up as well as he has, but the whole situation was really stressing him out because he recognized that most of his classmates did not share his struggle to understand what was being said, or what was being asked when the teacher would ask questions.

His teachers suggested he might do better in a smaller class setting, at least for the core subjects, and we agreed to put him in a self-contained ASD class for part of the day (almost half the day when you add up the hours) for math, reading, and writing. For the rest of the subjects he is still in his regular ed class with resource support. It's a much smaller class where all the kids have similar issues and the teachers have the flexibility to tailor to the kids' pace and individual needs much more than in the larger classroom. They also do activities like morning yoga since the physical activity helps the kids focus for learning (honestly, I think all kids would probably benefit from something like that, not just kids on the spectrum). We'll reassess later this year when we update his IEP for next year.

He started in his new class after the Thanksgiving break and so far it is really working out well. His anxiety level is considerably less, he no longer cries about having to go to school and he is doing well academically. He's back to getting all 1's on his daily reports (they have a scale from 1-4 for how he does at staying on task and following instructions with minimal reminders, etc.). It's been hard to see him struggle so much, and although I wish it wasn't so hard for him I'm grateful he's getting the support he needs and relieved that he's back to feeling positive about school.

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Language barrier & school struggles

We had teacher conferences last month. All in all, it went well, especially for Cuddlebug and Bearhug. They are working really hard and doing great - all A's and B's (mostly A's!) :) and they are thriving in their accelerated classes.

Bitty is also working really hard but he is struggling more with school this year than he has in the past. I'm grateful that his teachers "get" autism and understand the source of his difficulty is language related and not cognitive or attention related.

His teacher shared her concern that he is really struggling with anything that requires verbal explanations or verbal interaction. It's something we've been aware of for long time (obviously), but in 1st grade there is more of a need for language skills to be able to keep up with the class. His teachers have all noted that he is very bright and catches on quickly with anything that is not language-intensive.

The best analogy I can think of is someone who is going to school in a foreign country, and they aren't exactly fluent in the native language... they have the added challenge of trying to keep up with conversations and translate instructions so they can understand what is expected.

That's pretty much where Bitty is at. The good news is, he is not being disruptive or having behavior issues when he runs into difficulty following what the class is doing. The not-so-good news is, he is basically zoning out when that happens. They're working with him to raise his hand and ask questions when he doesn't understand something, but often he just tunes out and ends up either not responding, repeating back the question, or saying "I don't know" when asked a question (the "I don't know is fairly new, he's been working on that as a more appropriate response than repeating back the question since last year).

He comes home with a daily communication sheet with the day broken out into the various activities and subjects that they work on every day and feedback on how he did during each. There's a 4-point scale, with 1 meaning he was able to work independently or with minimal reminders and 4 meaning he need LOTS of reminders to follow instructions and stay on task. He started out getting mostly 1's and 2's but as the school year progressed we started to see more and more 3's, and then 4's.

His teachers often write in the comments that his behavior is fine, it's just a matter of not seeming to understand what is expected or not being able to appropriately respond to questions (eg. answer questions about a book they read during reading time). He tends to do better earlier in the day (but not always) so I think to some extent it just takes a lot of effort and his capacity to put forth that level of effort starts to wear thin as the day goes on. But beyond that I have come to believe that there are situations where he truly does not understand what is being taught due to the language barrier.

He has started asking us on a regular basis what words mean. It's great that he can do that now but I am sometimes surprised by the words he asks about, having assumed he already knew them. And I find it difficult sometimes to explain what one word means without having to define it with another word he doesn't understand. When you think about it, in order to understand the dictionary you have to be starting from a basic understanding of the language.

Anyway, so dh and I discussed and decided that since we know that both his regular ed and resource teacher are well aware of the issue and are working with him on it, we'd see how he did over the next few weeks and if things didn't improve we'd approach them to see if we may need to consider adjusting his level of support.

Well, we didn't end up needing to suggest that, his resource teacher called me last week to say that she and his speech teacher wanted to schedule an IEP review to consider increasing his services at school to better meet his needs.

This is why I love our school - we've been fortunate that most of the teachers we've worked with over the years so far understand autism and they are proactive about meeting students' needs. (it's also a big part of why I'm nervous about the transition to middle school next year - a whole new environment, but keeping our fingers crossed).

We're scheduled to meet next Monday, I'll let you know how it goes. In the meantime, we're working with him at home also and trying to use visuals and hands-on learning as much as possible. That's nothing new as all of our kids learn better that way, but we're kind of in new territory with Bitty as his delays are more pronounced. Suggestions welcome.

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Conversations with Bitty

Bitty asked me one evening as I took him upstairs to tuck him in for bed, "does me hab schoo tomowwow?"

I couldn't help but smile, his wording is too cute but it is also an indicator of just how far he's come with his speech and communication skills. You may notice that he didn't say, "do YOU hab schoo tomowwow?"

After a LOT of time and effort, he uses the pronoun "you" correctly most of the time now, meaning referring to the person he's speaking to and not to himself.

It didn't occur to me that there would be a "next step" of differentiating between I and me (is the English language complicated or what?!) until we started hearing sentences like the one I started this post with:

"Does me hab schoo tomowwow?"
"Iss me sick?" (he had to stay home from school a couple of days this week as he was running a fever, he's feeling better now).

Other times (usually at the beginning of a sentence now that I think of it) he does great:

"I don' WIKE DAT!" (we hear that one a lot, sigh)
"I not hungry"

However he decides to word things, I remain infinitely grateful that he is (mostly) willing and able to communicate with us. It means the world to have some insight into what he's thinking (even though sometimes he still leaves us guessing).

He often likes to ask questions that we think he already knows the answer to. Maybe he likes the reassurance of hearing the answers again, maybe he's just making conversation.

For example, he drives his brothers crazy asking things like "do you wike Pokemon?", "wha'ss you fay-brit cuh-wer? Iss wed you fay-brit cuh-wer?" or "do you wike Kirby-right-back-at-YA?" (a cartoon that apparently went off the air years ago but still lives on YouTube).

If he deems the answer "unacceptable" he can be very persistent (ie. when Cuddlebug tried to tell him he doesn't have a favorite color). That can lead to some funny conversations, like Cuddlebug making up random names for colors that don't exist because he refuses to just pick a color and Bitty refuses to stop asking until he gets a satisfactory answer.

Bitty still tends to ignore us at times, and it can take a LOT of effort and repetition to get any kind of response when we are trying to ask him something or initiate a conversation with him. Or (gasp!) trying to get him to do something.

But other times he will actually seek us out and I am loving these little interactions:

Bitty, to me: "Iss Kirby a pink ball?" (grinning)
me: "Yes, Kirby is a big pink ball."
Bitty: "Does Mom wike Kirby?"
me: "Of course I love Kirby, he's one of my favorite characters!"
Bitty smiles in response.
me: "Do YOU like Kirby?"
Bitty smiles even bigger, nodding his head emphatically with a huge grin. Priceless :)

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Redirect... FAIL

We were at church Sunday and Bitty was wired, running up and down the halls with the occasional screech. He's been really having a hard time at church lately, but that's another post.

I took him for a walk and he was finally starting to settle down but I sensed he was on edge and would soon take off running again so I tried to distract him with the paintings on the wall.

"Who is that a picture of?" "What are they doing in the picture?" etc.

He wasn't really interested but as we passed the bulletin board I tried again.

"What does that say?"

He shouted, "I KNOW DA SCWIPTURES ARE TRUE!!!"

So much for trying to distract him *quietly* (sigh).

"Ssshhhhh... not so loud, angel."

He looked at me and pointed to the exclamation point at the end of the phrase on the board as he patiently explained, "Dat means WOUD or excited."

Oh... the exclamation point means loud or excited... of course (smiling now and stifling a laugh). He's learned all about punctuation at school.

"How about if we try an excited whisper?"

He did his best excited "whisper" which was not really a whisper but wasn't an ear-piercing yell either.

"I know da scwiptures are TRUE!"

...

Note to self: next time you try to distract Bitty with reading something, make sure there are no exclamation marks in sight.

!!

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Kirby

A while back I posted about how Bitty gave himself the nickname "Spunk."

Well, soon after that, he decided his new nickname would be "Kirby."

As in, this guy:



From this game:



What could be better for a guy who loved pink and video games?

So for months his nickname has been Kirby. Until just recently.

He woke me up one Saturday morning, waving his pink pinewood derby car in front of my face.

"I don' WANT da pink one, I wan'da RED one. Pink iss not my fay-brit cuh-wer. My fay-brit cuh-wer iss RREEEDDD!!!!!"

And on and on. I rolled over and told him to go ask Cuddlebug if he could play with his (red) car.

This was about the same time he started reading Olivia.

"Oh-wivia's fay-brit cuh-wer iss RED!"



He tried to get me to start calling him "Olivia" instead of "Kirby."

Dude.

That's where I draw. the. line.

I refused. He eventually gave up and let me call him by his real name for once.

The other day he called himself Kirby again.

I'm loving this continually expanding pretend play thing he's got going on, I really am. But some days I can't keep up! ;)

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The gift of voice

I've been thinking a lot lately about how far my boys have come in terms of their ability to communicate. Not just speech, but communication. As many of you know, having speech isn't necessarily the same as being able to communicate. I am so grateful for every word, every thought expressed that I don't have to guess. And I'm grateful for any clues our boys can give when the messages they're trying to convey are hard for me to understand. The ability to communicate their needs, wants, and ideas is something I will never take for granted.

Many children and adults must find their voice in ways other than the spoken word (as our boys once did and sometimes still do). One technology that can be extremely helpful is the iPad with special communication software. The cost can be prohibitive for many families, so this Christmas season the HollyRod Foundation is working to help provide this to both children and adults who would benefit from it.



To find more information about how to donate to this effort or how to apply to receive an iPad, visit the HollyRod Foundation website.


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Communication tip #318: Expressing displeasure

Let's say your mom buys you a new package of underwear. She was careful to buy Thomas ones (and was happy to find them in your size). Unfortunately the only ones available have a different design than the ones you currently have, rendering them UNACCEPTABLE.

How do you convey your displeasure to your mom so that she thoroughly understands, with no room for doubt, just how unacceptable said underwear are?

Do you:

(a) toss the entire package out the front door and slam the door shut
(b) throw the package into the refrigerator and slam the door shut
(c) open up the package, take the offending underwear out, and bite them
(d) all of the above

If you answered (d), congratulations!! You've successfully made your point! Ok, you made your point after (a) but now you've DEFINITELY made your point. There is NO possibility of misunderstanding. None.

~~~~~~~~~~

In my defense, I was aware that different Thomas pictures might be a problem, but that's all they had. I decided to live on the edge and give it a try. Crash and burn!

Sigh... I was actually going to take them back until that last one, but once the underwear has been slobbered on, there's no taking them back. Let's hope he changes his mind.



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Things I want to remember about this week

Bitty is really into shapes lately. So ice cream sandwiches are "rectangles," hot dogs are "cylinders" and the new block toy he found at a yard sale yesterday is a "cube." :)

~~~~~~~~~

Cuddlebug and Bearhug are into old-school video games ("into" is putting it way too mildly, lol). They've been obsessing over the dates various systems and old games were first published and they are constantly asking me questions about which video games I played as a kid (umm, I didn't have any video games when I was a kid... so deprived!! hehe). They've been asking for weeks for an old Nintendo 64, because "we like old things, Mom, because they're new to us!" We lucked out and found one at the same yard sale where Bitty found his "cube." Dh, who is a major technology geek, is pulling his hair out trying to figure out why they want to play Nintendo 64 when they have a Wii. LOL

~~~~~~~~~

When Bitty asked me for ice cream the other day, I asked him if he'd eaten all of his dinner. He got annoyed and huffed,

"I not a dinner friend!!"

hee hee :)

Side note: he's using "I" appropriately more and more now, instead of saying "you" when he means "I." Not all the time, but we're about 50/50 now. Yay! That goes a long way toward making it easier for people outside of his immediate circle to understand him.

~~~~~~~~~~

I've been looking everywhere for Bearhug's Christmas list (technically it was for both Bearhug and Cuddlebug, but Bearhug was the one who actually wrote it all down)... I wanted to scan it to share because it was so cute. #7 on his list was "a Christmas hug"... how sweet is that?

~~~~~~~~~~

The number fascination that Cuddlebug and Bearhug have always had lives on... it's just taken on a new dimensions. They can tell me the number of pages in their books (and sort their book series by # of pages). Bearhug is into copyrights and makes a mental note of the copyright year of any book or tv show he sees (I didn't even realize tv shows had copyright dates until he started rattling off a list of them for all of Bitty's cartoons one day). Cuddlebug can tell you the release date (year) of every Pokemon game ever made and a whole range of other games too.



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Autism Fair

We took the whole family to the Family Fun Day this year. Dh took Cuddlebug and Bearhug to the inflatables, where they spent most of their time bouncing :).


Meanwhile, I took Bitty on the train ride (he wasn't quite sure what to think of it at first, but he was enjoying himself by the time we finished).


After that we went to the petting zoo, Bitty loved it and we spent the rest of our time there.




One of the volunteers struck up a conversation with Bitty and I was really impressed that with only minimal prompting he engaged in a really good back-and-forth dialogue with her. He has come such a long way! He got "stuck" on a couple of phrases, like "ee's stuck in da old oak twee" which we couldn't figure out (I'm guessing that one came from something he read in school), but he was able to answer his name, age, favorite color (pink), favorite number (7), favorite letter (after some very deliberate pondering over that one, lol), and tell her all about our cat. He did tell her the cat's name is Martha (like the dog in Martha Speaks), which it's not, but he has taken to renaming our cat with whatever his favorite animal character of the moment is. Right now it's Pilchard (the cat from Bob the Builder).

We met back up with dh and the (big) boys and were all going to ride the hayride together but Bitty refused to get on.


He wanted to go back to the petting zoo :)




Flashback: Autism fair 2008



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Adventures in autism: balloon edition

A nice man at the store offered Bitty a balloon.

What could possibly go wrong? Let me count the ways...

I wanted to run screaming from the store. "Nnnooooooooo!!"

But that would probably be perceived as less than polite, so I didn't.

Instead, I repeated the question to Bitty, "would you like a balloon?"

"You wan' pink bawwoon?"

I looked at the man. Pleaselettherebeapinkballoonpleasepleaseplease.

He shook his head, "Sorry, we don't have any pink ones. How about orange?"

"You don' wan' da oweng one?"

"We have yellow, would he like a yellow one?" the man is probably regretting ever bringing up balloons by now, but this is just the beginning.

To my surprise, Bitty deems yellow an acceptable balloon color, so the man goes to get it for him.

When he brought it back, he offered to put it onto Bitty's wrist so it wouldn't fly away.

Strike 2. Bitty HATES tying anything on his wrist and squirmed away, refusing to take the balloon.

I offered to carry it for him, and peace was restored. Temporarily.

Yellow was not so acceptable once the balloon was in hand (or in mom's hand).

Bitty started getting agitated.

"Yewwow iss not good one. You don' wan' da yewwow one. You wan' to make it goner? Yeh, yewwow iss not good one. Iss time to keep it goner. You don' wan' da yewwow one. Da yewwow iss for goners!!"

And on and on. So I offered to "keep it goner" and went and found the man to give it back. Yeah, a little embarrassing but it was worth the look of relief on Bitty's face.

Things went ok from there, until we were checking out and Bitty saw the box of balloons behind the counter. He ran back there and started helping himself, sifting through them to see what colors they had.

Another guy was there and offered to blow one up for him.

Oh yeah, the whole color fiasco again. We were about to leave with no balloon when Bitty decided a white one would be better than nothing, so he ran back to ask for a white one.

He smiled and said thank you.

But then he decided white wasn't so great either.

He was getting more and more frustrated by this point.

"You don' wan' da WHITE one!!! Da WHITE-EEEEE iss not good!!"

We were finally done with what we needed, so I took the white balloon and started guiding Bitty toward the door.

He wanted to go back for an orange one. And a yellow one. I told him no and kept walking. I could see we were headed for a meltdown no matter what color he got, and wanted to get OUT of the store before that happened.

On the sidewalk outside, he started crying. "You wan' two bawwoons?... (counting on his fingers) ... you wan' seben bawwoons?"

Oh yeah, first the colors and now the numbers. Everything has to be seven. Or seventeen. Or twenty-seven. There is NO WAY I'm going back into that store.

As we got to the car, I put the balloon in first so it wouldn't fly away and he started screeching.

"If I don't put it in the car it's going to fly up to the sky. Do you want to let it go up to the sky?"

He immediately calmed down and nodded, "yes!"

So I handed him the string and he promptly let it go flying.

Not two seconds later he was crying again, "Nnoooooo!! Get da bawwoon!! No to da sky!!"

Ugh. I got him into the car and there we sat waiting while the meltdown ran its course.

He really wanted a pink balloon. And I really didn't want to deal with what was likely to be an evening-long cranky episode on a Friday night. I know the grocery store near our house sells balloons in their flower shop, because I've gotten them for birthdays before. I'm pretty sure they have all colors, so we should be able to find a pink one there. I offered to take him to get one if he'd calm down and buckle his seatbelt so we could leave.

Before we went in, I made him repeat several times, "ONE pink balloon. Just one. ONE pink balloon."

He repeated it the whole time we were there. "ONE pink bawwoon. Juss one! You ca' hab ONE pink bawwoon."

And whadd'ya know, we found out that the grocery store actually offer free balloons for kids (I would have paid whatever they asked at that point), and not only that, but they had the free ones available in PINK.

You know I was totally doing a little happy dance in my head when I found that out.

One happy Bitty... PRICELESS!! :)





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Window to Bitty's day

If we ask Bitty directly, "What did you do at school today?" or "Did you have a good day at school?" we are likely to get a repeat of the question in response. "Skoo today." or "goo day skoo." (I generally assume that last one is an affirmative response, but I could be wrong).

However, he has started to give us much more detail in his own way. The "tape recorder version" as I have come to think of it, because it's kind of like having a tape recorder in the classroom and listening to it later.

Out of the blue, and talking to no one in particular, he'll talk as he plays.

"Wittle dots, 'Bitty,' dass too much gwoo. Wittle dots."
"Dih I say wun? No wunning, you nee to walk."
"Don' tuh-uch, dass foh teachers!"
"Housekeepee! Iss time foh housekeepee."
"'Bitty' yoo iss be da door hoh-der."
"You nee to caln down, 'Bitty,' iss tine to caln down."

All said in his best teacher voice. The one-liners are what I can remember, but he often goes on to relay extended conversations, activity instructions, and so on. He repeats what his teachers say to his classmates also. Months later he still says, "uh-oh, 'J' iss wet." I have no idea if it was a bathroom accident or spill or what, but poor 'J' is never going to live that one down with Bitty repeating that over and over for months on end... (sigh).

I love to just sit and listen to him. Sometimes if he pauses, I might ask him about it.

"What did you glue today?"
"You were the door-holder today? How fun!" (he loves to be the door holder)

Maybe he does the same thing at school? (repeats conversations he heard at home). Sometimes he puts on his best "Mama" voice and I hear an echo of myself.

"No scweemee, 'Bitty,' dah hurss my ears."

I told him that ONCE when he screamed right into my ear (I was holding him at the time) and now he screeches just so he can cover his ears and repeat it over and over.

I'm amazed at the level of detail he can remember. He once spent about 20 minutes repeating every detail of a group activity his class had done, including who was assigned to which groups (listing all the names and telling them which teacher to go see).

For whatever reason, he doesn't seem to repeat what the kids in his class say, just the teachers. He does pick up on what the teachers say to his classmates though, not just what they say to him. (So we know all about who's been running in the hallways or touching things that are "for teachers," lol).

What's more is that sometimes he takes it a step further, not just repeating the words but actually acting out the "scenario." For example, running a few steps and then coming to an abrupt halt as he tells himself, "I seh no wunning!"

It's great to see him not only practicing his words, but pretend-play skills too :). I am so proud of him!





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"Can he talk?"

Bitty has made so much progress, and yet as he gets older the divide between his development in some areas and those of his peers seems to only widen. One of those areas is communication.

Not long ago, the boys had a friend over who asked me how old Bitty is. Well, first he asked Bitty but got no response, even with a little prompting from me (although Bitty did eventually at least look at him). So he asked me instead. "He's four," I answered. "Oh, my little sister is four too!" he said, "but she can talk. Can 'Bitty' talk?"

Hmm... define "talk"? I thought to myself, as it really is more complicated in practice than it sounds... but I just answered "yeah, he's learning to talk."

Someone else asked me recently whether Bitty understands when he answers a question by repeating it back (or more accurately, repeating back the last 2-3 words of the question). It was an honest question, the person was just trying to better understand Bitty.

There are times when it's hard to know for sure. But most of the time, yes, he does understand. I think he probably understands more than even we realize.

Cuddlebug and Bearhug sometimes complain that "'Bitty' can't talk" but they are pretty good at understanding him (and sometimes his actions leave no room for doubt as to exactly what he's trying to say, lol). Sometimes they'll even "translate" for me, explaining what they believe Bitty's various phrases or mannerisms are meant to convey.

He is slowly developing his repeated words and phrases into "scripts" and learning how to apply them in different situations rather than simply repeating them immediately or at random later times (he still does a lot of that too, it's a process). He's getting better at "correcting" us when we misunderstand him, rather than having a meltdown (unless he's too tired or overstimulated, and then look out!).

As the saying goes, "not being able to talk is not the same as not having anything to say." Bitty has so much to say, it's just up to us to listen.

More on that in my next post...





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Messages

Barbara at TherExtras is hosting a blog carnival with the theme "Messages."

I've been pondering this one for a while. When I think of "messages" I think of communication, one person sending and the other(s) receiving. I've written a lot here about different aspects of communication, both verbal and non-verbal.

So I thought I'd change it up a bit and write about the messages we send our children. What are the messages they pick up from our everyday words and deeds?

I remember as a newly pregnant mom I'd heard that it was important to talk to your babies often even though they wouldn't be able to really respond yet. Obviously they'd enjoy the interaction, the attention, and the sound of mom's voice, but it would also help them develop their language and social skills. And what kind of message does such conversation send? I imagine it tells a child, however young, that they are loved, that their opinion is valued, that we're interested in their thoughts.

So I made it a point to talk to my boys, even while I was still pregnant. Sometimes they responded with bone-splitting kicks to the ribs little kicks and jabs or somersaults (until they ran out of room, that is).

After they were born, I kept up our little one-sided conversations... sometimes they engaged with me, with a little smile or cooing. (So sweet!) Other times they seemed uninterested. Language development didn't exactly go as planned, but eventually those conversations became a two-way street.

Fast forward several years.

After Bitty regressed, my attempts at conversation were rarely if ever reciprocated. It was hard because for the first 15 months of his life, he had been sooo responsive. I kept up our little "conversations" though.

I'd ask him a question, pause though not actually expecting any response, and then ask follow-up questions to fill in the blanks. Sometimes I wondered if the message I was sending was "your mother is a little crazy," lol.

Fast forward again to the present. Bitty has come a long way, from being pretty much non-verbal before to now using short phrases and even quoting longer sentences (and singing!). Still, most of his interactions revolve around "the basics" - food, drinks, favorite toys, letters & numbers, and now emerging tiny fragments of "what I did today."

I didn't even realize until yesterday that I am still in the habit of asking questions I don't expect answers to. School was out and dh brought the boys to meet me for lunch near my work. Bitty and I found ourselves alone at the table for a few minutes. He leaned his head on me and appeared to be looking at something.

"Whatcha looking at, Bitty?" I asked. I didn't expect an answer to something so open-ended, his typical response would be silence or maybe an echo of what I'd said.

"Cahz" it was almost a whisper and it took me by surprise. In fact, it took me a second to realize that he had, in fact, answered my question.

"Cars?" I followed his gaze and sure enough, there were two large toy cars displayed up on a shelf.

Oh, but there was more! "Yeh-woh an' wed," he added.

"You're right, one's yellow and the other is red." He continued to admire them, perhaps imagining how much fun it would be to play with them.

I wonder how many times he has wanted to answer before, and if he feels a certain sense of accomplishment with each new communication milestone? The ability to send and receive messages to/from others is one he has worked hard at, and one he continues to develop.

I didn't realize how accustomed I was to not getting a response until that moment - what a thrill to get such a spontaneous answer! It may seem small but I see it as the beginning of a whole new realm of conversational possibilities opening up.

Which brings me back to my original topic - the messages we send our children. Like all mothers, one message I hope to be sending every day to each of my children is "you are loved."

It's why I listen to their assessment of various Pokemon stats and the merits of one over the other in battle, even though I have no clue when they ask me "what's the best water-type Pokemon" or "how do I catch Palkia?"

It's why I spend 45 minutes crawling around on the floor in search of the "mail car" when Bitty decides he must have that one, despite the toy box literally brimming with other trains he could play with.

It's also why I tell them to stop using the back of the couch for a balance beam, make them brush their teeth, and make them go to bed at a decent hour on school nights, even when they insist they're "not tired." Ok, they might be interpreting those as "my mom is a big meanie" instead of "my mom loves me" but someday they'll understand :).

And it's why I keep asking questions, inviting interaction, even when I think it's outside the realm of what I might actually get a response to. Because you never know when that day will come. (Remember Carly?).

I have struggled to tailor my messages to each of my children in a way that will be meaningful for them. How I do that is continually evolving as they grow and develop.

What messages do you strive to send your children, and how do you go about it?






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Autistic Teen Finds Inner Voice

Frog's Mom shared this on her blog and it is such an incredible story I wanted to share it here too.

Meet Carly, a teenage girl with autism. She is non-verbal and until age 11 had no way to really communicate with those around her. Then she started typing... and found a way to share her inner voice with the world. She and her family are amazing.



I think anyone who loves (and is loved by) someone with autism or sensory issues can learn something from Carly. You can check out Carly's blog at Carly's Voice.





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The silent treatment

Bearhug and Cuddlebug are quite verbal, and for that I am grateful. However, it is clear to me that while they may make it look effortless to the average observer, it does in fact take a fair amount of effort. I notice their words beginning to slur whenever they are tired or over-stimulated. Sometimes when it’s too much effort, they resort to hand signals and body language (pointing, nodding, etc.). And sometimes, all efforts to communicate break down.

This happened recently with Bearhug. A couple of weeks ago, he seemed upset after bathtime. He followed me around for a few minutes but wouldn’t talk to me when I asked him what was wrong. Having a just-bathed, squirmy Bitty to contend with (the boy who despises baths which makes bathtime a real treat), I shrugged and went about getting Bitty dried and dressed. I was about to head downstairs when I decided I’d better go check on Bearhug again first. I found him curled up on the floor next to his bed – still not dressed. A little concerned to find him like that, I asked him again what was wrong.

Silence.

I waited a few moments and asked again. More silence. I started trying to guess. Was he hungry? Thirsty? Tired? Cold? Not feeling well? Did his tummy hurt?

I paused after each question, looking for any sign of a response. There was none.

I noticed that he was directly under the air conditioner vent and asked him again if he was cold. Getting no response, I told him if he got dressed, he’d feel warmer. Still nothing.

I decided to take a chance that maybe that was it, and I pulled the comforter off the bed and put it on top of him. No response still. I gave up trying to talk to him and just laid down on the bed next to where he was. I figured eventually he’d have to get up, right? And I didn't want to leave him alone like that, when it seemed obvious that something was wrong even if I had no idea what it was.

Several minutes later, he got up and climbed into the bed next to me, bringing the blanket with him. He cuddled up to me, but was still silent. So was I.

A few more minutes passed, and he jumped up, seemingly back to his chipper self.

“Sorry, Mama,” he said.

“For what?”

“For not answering you, I was too cold to talk.”

“It’s ok. But next time you’ll be warmer if you get dressed right away.”

And with that, he was off to get dressed, and he was fine. We have these little episodes every now and then, sometimes with Cuddlebug too. (Bitty doesn’t go silent when he’s overwhelmed, he goes into meltdown mode). I wish I could read their minds on days like that, because the guessing can be frustrating, especially when I’m guessing wrong.

Actually it seems to be more frequent recently but I think it's because of all the "new" things going on - a new school year - with a new teacher, new classmates, new classroom, and new lunchtime - starting Scouts, etc. Things are slowly starting to settle down again as each of us gets accustomed to our new routines. Despite a few speedbumps, this is actually probably the smoothest transition we've had into a new school year - ever. Let's hope that's the start of a new trend ;).






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Interpreting Bitty

Before Cuddlebug and Bearhug were diagnosed with autism, I had never heard of echolalia. Cuddlebug in particular had a habit of frequently repeating back the last thing we said, and except when it was obvious that his response didn't make sense, I just took it at face value as a response. (I learned the hard way that's not always a great idea, misinterpreting a response can lead to a meltdown!)

It wasn't until the pediatric neurologist evaluating the boys actually asked me if they answered yes/no questions that I realized they didn't. As a therapist later told me, it's easier to notice unusual behavior that is present than it is to notice "typical" behavior that is absent.

So after all these years I feel I understand echolalia a bit better, but I still struggle to interpret it sometimes. When Bitty repeats back something I just said, is he answering in the affirmative, or is he just repeating? Sometimes he'll repeat it back with a "no" in front of it and then I know he's answering in the negative.

Example:
Me: "Bitty, are you ready for a bath?"
Bitty: "No weh fo' baf!"

Me: "Whatcha doing?"
Bitty: "No wah-choo doo-in'" (translation: I'm too busy to talk to you right now, or something along those lines)

Other times it's not so obvious.

Me: "Would you like some cran?"
Bitty: "cwah"
(I pour him a cup of cranberry apple juice)
Bitty: "no cwah"
Me: "But you said you wanted cran"
Bitty: "you wah chwokka miwk?"
Me: "No... do YOU want chocolate milk?"
(a happy dance)
Bitty: "YYYESSS!"

He gets creative sometimes, repeating back questions I have asked him before, that he wants me to ask him again (like "you want chocolate milk?" or "you want your trains?" lol). I've noticed that when he's repeating, he can say all kinds of words, even sentences and entire dialogues. Like the Pledge of Allegiance. His words are clearer when he's repeating something too. His "spontaneous" speech is more often shorter (one word or a brief phrase) and harder to understand.

Sometimes there's a "delayed reaction" aspect too.

Friday, dh asked him what he did at school that day. He answered with the name of one of his teachers.

About 2-3 hours later, he was sitting with me on the couch with his drink and some trains. He pulled the cup from his mouth and said, to no one in particular, "house-keepee... bee-bags" (housekeeping, bean bags). Now, I'm pretty sure those are things they have / do at school (the "housekeeping" center at school was one of Cuddlebug's favorites at that age too), so I'm guessing that this was a delayed response to the question about what he did that day. Today he found a little bean bag in the toy box (long since forgotten) and was repeating what sounded like a game that they must have played at school with bean bags.

It's these repeated conversations that are starting to give us a greater glimpse into his days. It's almost like getting a tape-recording of a little snippet of his day, because he doesn't "narrate" it, he says it word for word as if he was back there again. His weekly class newsletter said they learned about boys vs. girls last week. I asked him, "are you a boy or a girl?" He answered, "a goowul" with a giggle. (he has a silly sense of humor). Then he started into what sounded like his teacher's instructions, "ith yo' a bowee, tushyo' fee'" (if you're a boy, touch your feet)... "ith yo' a goowul, tushyo' nose." He pretty much ignored me as he did this, not really engaging me so much as reliving what was apparently a fun activity :).

A year ago, his words were few and far between. That was about the time he finally started saying words here and there, before that time he was pretty much non-verbal. It was about a year ago that he finally said "mama" again after he stopped saying it when he regressed. Nine months ago, the only answer he gave to the question of what he did at school was the word "skoo-bus" even though he's never ridden the bus so I can only guess it was just something he associated with school.

He's come a long way in the past months and year. He's talking so much more now, and yet so much of what's going on in his mind remains a mystery. For example, I have no idea why he says, "May-bis" (Mavis, one of his trains) whenever he sees me heading to work or coming home from work. Is it an association because "Mama" and "Mavis" both start with the same letter? So does "Molly" but he never says that when he sees me? Does he think I look like Mavis? Gee, I hope not ;).

As K said recently, it's hard to really know what he knows and what he doesn't. He surprises us often, and I have no doubt that more surprises are in store :).





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Triangle mystery - solved

A couple of weeks ago, I wrote about Bitty's quest for an unknown "twigul" (triangle). He first asked for "dwaw twigul" and then "twigul on da wadder" (triangle on the ladder, in other words, in the attic) but I was at a loss as to what he was actually looking for.

About a week after that, I stumbled onto the answer. I was helping look for the trailer that goes with one of his train toys (that was an easier request to understand - he just showed me the train and I could tell immediately that the trailer part was missing). I was taking toys out of the toy box so I could search at the bottom for the trailer piece and one of the toys I pulled out was a mini-magnadoodle that he hasn't played with in a while. As soon as he saw it, he smiled and said, "dwaw twigul."

I looked at him and the magnadoodle and it made sense. "Is this what you were looking for the other day?" I asked.

"Dwaw twigul!"

I drew him a triangle, which he promptly erased and started drawing other shapes. I kept digging around in the toy box until I found the trailer and we took both of our finds downstairs.




He was so excited to find the magnadoodle, I decided to take some video of him playing with it. He drew squares and a circle (no triangle, he has a hard time with diagonal lines), and even a letter H, complete with a play by play, "start here, make a line to here..."



Whenever he wants to draw something that he's not quite sure how to draw, he'll hand it to me and say, "Mama do." Sometimes I'll hand it back and say, "'Bitty' do," but he can be persistent, and usually ends up physically putting my hand on the little pen to make his point. "Mama do."

He's been having fun with the magnadoodle ever since, he even asks me to draw "cwooz" (clues) from Blues Clues. It took me forever to figure out one of them - he asked me to draw a ticket, a "koontz," and a wand. I could do the ticket and the wand but had no idea what the "koontz" was all about. Finally one day he pointed to the window. "Wih-dow... koontz" Oooohh. Curtains. I drew him a window with curtains and he was so excited that I finally got it :). Then I realized what the clues are - a magic show. I guess that also explains his "hokey pokey" in the video (hocus pocus). Too cute!





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