Monday, September 28, 2009

Halloween is right around the corner...

...and I knew Cuddlebug was going to want to dress up as some obscure Pokemon. I was worried he'd pick some oddly-shaped Pokemon that I wouldn't be able to figure out how to make a costume for. Thankfully, he picked this one:

It's a Pokemon called Salamence, and well, I'm thinking maybe that one won't be so hard to do. I mean, basically it's a dragon. I should be able to find some tips on making a (hopefully easy) dragon costume, and then customize it to use these colors, etc.

Yeah, I think I can do that. But I better get on it... because it's almost October!

As for Bearhug, he just shrugged and said he doesn't want to dress up. Halloween costumes - not his thing. Halloween *candy* on the other hand, now that he can get on board with. Or as he said in reference to birthday cupcakes not too long ago, "I want some of that action!" LOL Maybe he can just say he's going as "Ash" the Pokemon trainer, no costume really needed for that.

And then there's Bitty. He doesn't really understand what Halloween is all about and probably couldn't care less if he dresses up or not. Gee, I wonder what we should dress him up as? Well, considering that the ONLY thing he wants to wear is clothes with Thomas on them, I think it's pretty simple, eh?

Oh yeah, he's going as Thomas. Again. I must say, we're getting some mileage out of these costumes - I made them back when Cuddlebug and Bearhug were Bitty's age :).

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Wednesday, September 23, 2009


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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Monday, September 21, 2009

Magic Marker Monday: Vase

Cuddlebug brought this home from school on Friday. I love it! I'm taking it to work tomorrow to hang up next to this one.

Visit 5 Minutes for Special Needs for more Magic Marker Monday.

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Sunday, September 20, 2009

Random Updates: Singing, Spelling & Scouts

I haven't had a chance to do much blogging this week, but I do have some updates (as much for my own journal as anything else):

We've seen some new talents really emerging lately from Little Bitty - singing and spelling. And with the spelling - reading! He wants to spell out pretty much every word he sees, and he's committing a lot of them to memory. I showed him a list of words today to see how many he could read (I was curious how many he'd get without a visual picture / cue, just the letters) and he got about half of them. Not bad! Among the list of words he knows:


And singing! He is constantly singing something, and I'm amazed at how many songs he knows and remembers. When we saw a spider outside, he started singing "The Itsy Bitsy Spider" (as he packed up his toys to go inside, because when the song was over, he was anxiously repeating, "No spi-uh... no spi-uh"). When he was happy about something, he sang, "If you're happy and you know it." He sings the cleanup song, 5 Little Monkeys jumping on the bed (sometimes with the doctor saying "no more monkeys sitting in a tree," not sure where that came from?), and some other songs that I don't recognize that he must have learned at school. Sometimes he'll just sing to himself as he plays. I've tried taking video of him a couple of times but he stops singing when he notices me :(. I'll try to be more sneaky about it.


We've decided to let Bearhug take a break from Cub Scouts. He had fun that first week, but since then he's been stressing out about it, progressively worse each week. Honestly I don't really understand why it's so stressful for him - he says it's "boring" but how can you be bored when you won't even go in for the first 30 minutes? Anyway, I don't want to get into all the details but after this week we decided it just isn't worth him getting this worked up, it's supposed to be fun after all. He did manage to earn his Bobcat though, so I'll make sure he gets his badge for that. We left it open for him to go back later if he wants to give it another try.

Meanwhile Cuddlebug is the most gung-ho Cub Scout I've ever seen, he is really into it! (And with him being so nervous in the beginning it was actually him that I was worried about, go figure). He was so excited to finish his Bobcat requirements, and he's really looking forward to getting to work on his Wolf badge. So it looks like it'll be just me and him at Scouts for the time being.


And a not-exactly-newsworthy update about me:

I decided to color my hair (red) this weekend. I don't post pictures of myself that often, but in case anyone wants to see it here it is. Oh yeah, and for my family who haven't seen me in a while, I cut my hair too, a few weeks ago... which you probably guessed without me pointing it out (thank you Captain Obvious, lol).

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Friday, September 18, 2009

Houston: We have poop!! (Updated)

LOL, I can only imagine the google searches I'm going to get now but oh well.

Mr. Bitty pooped on the potty yesterday!! Woohoo! He hasn't even wanted to TRY, in fact has gotten extremely upset whenever we suggested so much as an attempt. And then yesterday he just jumped up there and did it all on his own.

We suspect that maybe he couldn't find a pull-up to bring us (we're almost out but there were still some in there) and it may have been too urgent for him to take time asking for help finding a pull-up, so he relented and used the potty...

Whatever it was, I'm really hoping this is a new trend and not just a one-time thing. I'll keep ya posted!


Ok, I may have jumped the gun a bit with my excitement... today he was back to wanting a pull-up (even after we tried to hide them) and he went ballistic when I tried to get him to poop on the potty. We'll keep trying though!

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Wednesday, September 16, 2009

Special Exposure & Wordless Wednesday


Click here for more Special Exposure Wednesday. Click here or here for more Wordless Wednesday.

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Blog Carnival at TherExtras: Messages

In case you hadn't seen it, just wanted to let you know about the blog carnival coming up over at TherExtras. The theme is "Messages" and if you'd like to participate you'll need to submit your link by next Wednesday, 9/23.

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Sunday, September 13, 2009

Baby Picture Sunday: Toes!

Time to lighten things up around here, and how better to do that than with adorable baby pictures? :)

This week's theme at Who Says 8 is Enough? is "Twinkle Toes."

I had to think about this one, but then I remembered these:

Cuddlebug's toes sticking out of his swaddle-blankie :)

Little Bitty's little-bitty toes!

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Saturday, September 12, 2009

How do I explain?

Yesterday morning, Cuddlebug asked me about 9/11. He wanted to know if "nine-eleven" means the numbers to call the police. I answered that yes, 9-1-1 is what we dial if there's an emergency (we've discussed before but I guess he forgot?) but I suspected that wasn't really what he'd seen reference to, so I added that "nine-eleven" refers to a date, September 11, 2001. By that point I had Bearhug's attention too. I tried to explain the significance of that date but couldn't find the words.

"A very bad thing happened that day." I started. That doesn't even begin to cover it, I thought.

Impatient with my hesitation, Bearhug jumped in to fill in the blanks for me.

"I know, Mama, a horrible thing. It was a twister... right?"

"Uh... no, sweetie. Worse than a twister."

The images of that day flashed through my mind. Planes crashing into the sides of the twin towers, the Pentagon, and a field in Pennsylvania. Flames and endless smoke. People jumping from windows in desperation. Survivors covered in ash, wandering in shock. How do you explain the horrors of that day, the unthinkable acts that took the lives of almost 3,000 people? How do you explain that it was caused not by a natural disaster, but a deliberate act born out of hatred and evil?

Bearhug looked at me. "I know what's worse than a twister," he said, "...a hurricane! Was it a hurricane?"

Oh, the innocence of children...

"No honey, not a hurricane either." Words eluded me.

It was time for the boys to leave for school. "We'll have to talk about it later, guys."

And we will, at some point, on a very basic level at least. I just haven't figured out how yet...


This video tribute is very moving:

From last year
Project 2,996:
Remembering Debora Maldonado
Remembering Joseph Maffeo
Friends of Project 2,996 (Tributes written by those who don't have a blog)

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Friday, September 11, 2009

Remembering Grandma Marian

Today marks 17 years since my Grandma Marian passed away on September 11, 1992 after a long battle with cancer / leukemia. She was just 14 days shy of her 70th birthday.

Grandma Marian was a beautiful person - a devoted wife, mother, and grandmother. She and my mom taught me how to play Solitaire, and whenever we visited we'd pull out three decks of cards and play Triple Solitaire (it's way more fun than playing by yourself). She was one of the most selfless people I know, always thinking of others. She loved life and never let anything slow her down.

Meet Grandma Marian:

I took this as we waited with her at the airport, she was flying back home after visiting with us. I love her smile here, full of sparkle and spunk.

Grandma Marian and my mom

Aside from playing games, the three of us had fun shopping together, but mostly just hanging around chatting together.

Three generations - my mom, my grandma, and me

Grandma Marian and me, back in the day

Grandma Marian left this world the year before I was married, so my husband never got to meet her. Neither did my brother's wife. Nevertheless, I believe she was there in spirit to witness both of our weddings and the births of her great-grandchildren. I like to think she spent time hanging out with them in heaven before they were born. :)

Grandma - we love and miss you, and I know we'll see you again someday.

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Remembering Debora Maldonado

About a month ago, I signed up to write a tribute for one of the people who lost their lives on 9/11 as part of Project 2,996. The goal is to honor them by remembering their lives.

Meet Debora (Debbie) Maldonado. Nicknamed “Mouse” by her husband, Otelio, for her short stature, she was anything but timid. She is remembered as feisty and warm-hearted, a shopoholic who loved a bargain, a devoted wife, mother, daughter, sister, and friend.

Debbie, age 47, was born in Panama. Her family moved to the United States when she was about 5 years old. She earned an Associate of Science degree from CUNY Brooklyn College. She worked as an executive secretary at Marsh & McLennan for over 21 years, and before that worked at American Brands. Her office was in the north tower of the World Trade Center, although she was actually packed and scheduled to move back to MMC's midtown office sometime the week after 9/11.

Debbie called her sister, “Miss Miriam,” every day before lunch and visited her mother every Sunday. She and her husband were high school sweethearts, together since she was 14 years old. She struggled with infertility for 16 years before becoming pregnant with their daughter, Krystal. Two years later, their son Chris was born.

She was a woman who embraced life. Her sister recalls a conversation they had in August 2001 while Debbie and her children visited her in Miami. "You never know what’s going to happen tomorrow." When her sister asked, "What are you talking about?" Debbie responded, "I’m going to enjoy my life now."

My thoughts and prayers are with Debbie's loved ones today. We will never forget.


Tuesday, September 8, 2009

Twins in the Womb

This is too funny :)

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Monday, September 7, 2009

Mondays in Motion #18: Pokemon

Mondays in Motion!

I remembered this month! It's the first Monday of the month, time to share a video for Mondays in Motion.

Since I missed last month, I'm sharing two (they're both short). The first one is Bearhug, with help from Cuddlebug, giving us a tutorial on Giratina, one of the newest Pokemon they had caught when this was filmed. Needless to say, they were excited because they'd been hoping to catch one for a while. At the time, they pronounced it "Grinta."

And just for some gratuitous cuteness (hehe) here is Cuddlebug telling me about a video he saw in which someone "evolves" (you know, like a Pokemon evolves) into a moose (apparently by putting their clothes on a toy moose, lol).

I realize my posts have a lot of Pokemon and trains in them, but that's what my kids are into... and that's putting it mildly ;).

What videos do you have to share today (or anytime this week)?

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Magic Marker Monday: Gordon

A couple of weeks ago, Bitty brought me his watercolors and put them in my hand. This is a rare request for him, usually he isn't particularly interested in artistic endeavors.

"Do you want to paint?"


"Do you want me to open this?"


"What do you say?"

"Opeh... PWEEZ!"

I opened up the paints for him and found a little bowl and put a small amount of water in (the less to make a mess with, my dear, haha).

He did a few strokes with his paintbrush before he got bored. I put extra water on the paints to soften them up, because I think part of the problem was he wasn't getting much color onto his brush.

A little while later, I found this at the table:

The colors he used made it clear that he was painting a picture of Gordon (one of Thomas' buddies for those not steeped in the world of Thomas & Friends). I love how he knew what he wanted to paint and brought it over to use as a model :).

For more Magic Marker Monday, visit 5 Minutes for Special Needs.

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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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Sunday, September 6, 2009

Baby Picture Sunday: Holding Hands

Today's theme for Baby Picture Sunday is "I wanna hold your hand." Time to share some shots of holding hands :).

There's the one in my header, of course, but you see that one every time you visit :). So here are some others that I found.

This is a fairly recent one, this is Bitty holding his grandma's hand on a walk.

And here are a couple of Cuddlebug and Bearhug holding hands as babies. Please forgive the poor quality on these... this is from back in the "olden days" before I had a digital camera!

Cuddlebug (left) and Bearhug, about 1 month old

In case you're wondering about the size difference, that is a result of Twin-to-twin Transfusion Syndrome (TTTS).

Cuddlebug (left) and Bearhug, about 5 months old

Lastly, here's one of me and Cuddlebug, taken in the NICU, doing our "preemie" version of hand-holding where they would wrap their little hands around my finger :).

Got some hand-holding pictures to share or want to see what others are sharing? Head on over to Who Says 8 is Enough.

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Saturday, September 5, 2009

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.


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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SOOC Saturday: Working together

The "big boys" all doing yardwork together:

while Little Bitty supervises ;)

For more SOOC Saturday, visit Slurping Life.

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Tuesday, September 1, 2009

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.

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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I'm a mom of three boys on the autism spectrum, 11-yr-old identical twins and a 7-yr-old. My husband is a SAHD.


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