Saturday, May 30, 2009

SOOC Saturday: Jump!

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We have a big rock in the front yard that is just perfect for jumping, although you can only see the tip of it here. (In fact, when we were house-hunting with our then almost-3-yr-old twins, the big rock in the yard was a big selling point as far as they were concerned, lol). Mr. Bitty had a great time the other day jumping off over and over:




For more SOOC Saturday, visit Slurping Life.





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Friday, May 29, 2009

If you give a Dad a DS...

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If you give a Dad a Nintendo DS...

He’s going to want to play some games. He might just want to play your favorite Pokemon game.

Once he gets started, he’s going to want to unlock new levels and find new Pokemon.

Then he might decide to hook it up to the wi-fi so he can chat with other Pokemon trainers online.

Next, he'll ask to borrow your Pokemon handbook so he can improve his chances of successful Pokemon battles.

When you ask for your game back, he’ll tell you, "just a few more minutes, I’m going to beat this level for you."

You might have to find something else to do for a while.

For a long while.

Several hours later, when you ask for your game back again, he’ll tell you again that he’s almost done.

Your mom will have to remind him that it’s not his game and make him give it back to you.

Later, you'll have to come back downstairs because you realize he still has your Pokemon handbook. He's busy studying up on the different types of Pokemon.

The next day, you’ll find him playing your game again. He might get worried when he thinks you released one of his prized Pokemon. He’ll be relieved when you show him the Pokemon is still there, it just evolved into a new form.

Your mom will roll her eyes at your dad’s barely concealed panic over what he thought was a lost Pokemon, but no one will notice.

He’s going to tell you he’s working on finding you some more new Pokemon. And he’ll tell you he’s "almost done."

Uh-huh.

You’re going to have to start hiding your Nintendo DS :).






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Thursday, May 28, 2009

How old is he?

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K posted recently about answering the question of a child's age. I was surprised at the range of emotions I felt as I thought about my own answers to that question in the nearly eight years that I have been a mother.

It seems like a simple question, with a straightforward enough answer. Usually people who ask are either curious or just making conversation. Sometimes, though, the answer seems more complicated than it ought to be.

When Bearhug and Cuddlebug were babies, I always gave two answers - their actual age and their gestational, or "adjusted" age (the age they would have been had they been born on or near their due date).

"They're 2 months old, but their adjusted age is 2 weeks."

As they got a little older, they grew quickly and didn't seem as small for their age, but I still felt the need to qualify my answer since their developmental milestones were more appropriately gauged based on adjusted age.

"They're six months old, but their adjusted age is 4 1/2 months."

By the time they turned one, they were actually big for their age rather than small. We joked that maybe it was the steroids they received at birth to help their lungs develop.

I don't remember exactly when I stopped telling people their adjusted age, but as they entered the toddler stage my perspective on the question of age changed a bit.

As children move through the toddler and preschool stages, people tend to stop asking and make assumptions based on size. I became very sensitive to this because my boys were large for their age, but increasingly delayed in their development. Their behavior was more like children younger than them, but people assumed they were even older than they actually were, so it was a "double-whammy" in terms of the gap between where they were and where society at large expected them to be.

I became eager to set the record straight and make sure people knew they were "only 26 months" or "barely three" as a way to help explain their behavior (didn't know their dx yet) and insulate them (and us, let's be honest) from the harsh judgments of those who assumed they were older. They were big enough to look as much as a year older for a long time, and the "isn't he a little old to be acting like that" stares got old in a hurry.

At least that is one worry we don't have with Bitty... he is right-on average size for his age, so he's not typically mistaken for being older. On the other hand, his delays are pretty significant in some areas, so that "gap" between reality and perceived expectation is still there.

I hate to admit it, but one thing I was not looking forward to about his fourth birthday was having to tell people he is four now. It just seems to highlight the difference between him and other children his age. When he was three, I could just say, "three" without getting specific. I didn't tell people he was almost four, I just let them assume that perhaps he was a "younger" three.

Sometimes when I tell people Bitty's age, I get confused looks in response. I usually just smile and let it go at that (although if people are genuinely interested, I am more than willing to share, in fact I often appreciate the opportunity to do so). But after all, in the bubble that is my life, Bitty is a "typical" 4-yr-old :).





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I ♥ Faces: Silhouette

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This week's theme at I ♥ Faces is silhouettes. My entry is over at my photo blog, it's a picture of Bearhug doing yoga, which he learned using Wii Fit (click here to see it). :)





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Wednesday, May 27, 2009

Our story part 13: Small steps

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Skipping ahead again, back to Little Bitty:


Little Bitty’s regression didn’t stop just because we had recognized it for what it was; it seemed to take more and more effort to get Bitty’s attention and draw him out. And with the loss of communication skills, his frustration grew and the meltdowns began. I longed for his 2-minute angry dance when he began having scream-fests that lasted up to 2 hours.

Sometimes I have wondered what it must have been like for him. As hard as it was to see him losing skills and going from very friendly to quite detached, I can't imagine what it must be like to be so young and find communication more difficult every day. To find that you used to know how to ask for something, but now you just can't seem to do it. Words people said to you used to make sense, but now they seem like gibberish. Is that what it was like for him? I guess unless he remembers and eventually becomes verbal enough to tell us, we'll never know.

I remember he seemed so frustrated that I couldn't read his mind. It was as if he was clearly picturing what it was he wanted, but couldn't find any way to communicate it to me, and the more I tried to guess the more upset he got.

He also began to show more obvious signs of sensory / motor issues. He no longer showed much interest in coloring, and when he did he used a fisted grasp rather than the tripod grasp he’d had early on. He started licking the sidewalk. And the asphalt in the parking lot (gross). He could drop to the ground in a flash, so it was almost impossible to grab him before he could put his curious tongue to the ground. He seemed to have an extremely high pain tolerance – he once burned his hand (long story, another post) and didn’t cry. At all. In fact, he seemed almost unaware that he’d been hurt (and from the looks of it, he should have been aware). On the other hand, he dropped to the floor in hysterics if someone dared to run the microwave or hair dryer (they both had a similar sound, which apparently his ears did NOT like).

We had difficulty getting him to eat; all he wanted to do was drink milk or juice. He had a very short list of "acceptable" foods, but from day to day we could never be sure if he’d eat even those. He didn’t seem to make the connection between not eating and the hunger pains he felt, because even when he’d gone all day without eating and it was painfully obvious that he was hungry, he’d cry and scream but still refuse food. We even got desperate enough to try to sneak little bites into his mouth, hoping he’d eat it once it was there, but as you can imagine that just made him mad :(. When he finally decided to eat, he’d eat all day. We kept a close eye on him and kept his doctor informed, but at each checkup his growth was still on track.

He got fixated on things, like opening and closing doors, or the stack of DVD’s that he carried wherever he went. He started having sleep issues. Sleeping through the night became a rarity (again) as he’d wake up at 3am and stay up for hours. Sometimes he’d cry the whole time until he finally wore himself out and went back to sleep (just about the time we had to get up for work / school). Other times he’d be in a good mood but wired, refusing to go back to sleep and insisting on playing or watching Yo Gabba Gabba (thank goodness for DVR or we’d have had more meltdowns on our hands).

It took time, but we started to see small gains as he progressed in therapy. He learned a couple of signs, "more" and "help." We tried to teach him other signs, but he seemed to have as much trouble using signs as he did using verbal communication. Some days he did great in therapy, some days he was pretty uncooperative. He still had a lot of catching up to do.






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SEW & WW: Asleep at the mouse

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This weekend, Bitty went in to play "wekkum to noggin" on the computer and within a few minutes I found him like this:




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Our story part 12: Details, details...

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I've mentioned before the importance of details, thought I'd share this as just one example of the importance of details to kids on the spectrum (well, mine at least).

Bearhug and Cuddlebug were three years old, and we were visiting my SIL out of town. They had a pool in their neighborhood and the boys wanted to go swimming, but we didn't have any floaties for them so we needed to make a quick trip to the store. We told them we were going to Walmart and headed out.



Walmart was just a few minutes' drive away. Everything was going fine until it was time to get out of the car. Bearhug took one look at the store and started getting upset. He refused to get out of the car and the more we tried to convince him the more agitated he became. Finally, I agreed to wait in the car with him while everyone else went inside.

With just the two of us and no immediate pressure to get out of the car, he relaxed a bit and started trying to tell me what was wrong.

He said he wanted to go to Walmart. I told him we were at Walmart and showed him the sign. He wasn't reading yet but he recognized the signs of a number of his favorite stores. He repeatedly insisted that this was NOT Walmart. Perplexed, I asserted equally firmly that it WAS.

Finally he found the words he needed and blurted out, "Not Walmart RECTANGLE, Mama, Walmart STAR!"

I started to ask him what he meant by "Walmart rectangle" and then it dawned on me. The Walmart near my SIL's house had a hyphen (or rectangle) in the middle Wal-mart.

The Wal*mart near our house that we usually go to, has a star in the middle instead, like this:



I had never even noticed the difference, much less realized how much it would impact him :(.

Armed with this new insight into why he refused to go into the store, I was able to explain to him that "Wal-mart rectangle" and "Wal*mart star" are indeed the same store, and that sometimes they like to use a rectangle and sometimes they like to use a star, but it's all the same store. He was skeptical, but he finally agreed to go into the store with me and join the rest of the family.





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Tuesday, May 26, 2009

Our story part 11: Cuddlebug's preschool progress

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I wrote some about Bearhug's preschool experience previously, so I'm backtracking a bit here to share some of Cuddlebug's preschool experiences.

One that stands out is the first time Cuddlebug was able to offer some kind of explanation for one of his meltdowns.

We were in the parking lot at Walmart and Cuddlebug noticed that there were signs marking the row numbers. In all the times I'd been to Walmart before, I had never noticed that (guess that shows how observant I am, huh?). We often asked the boys to help us find a "good spot" and Cuddlebug kept saying, "mumber seben, mumber seben" but before we got there, we found a closer spot in row number 5 and pulled in.

Cuddlebug went ballistic in the backseat, screaming and kicking the seat. Dh and I looked at each other, decided it wasn't worth it, and pulled out to go find a spot in row number 7. We found one, and all was right with the world again. We asked Cuddlebug if it was a good spot, and he replied, "yes." (answering yes / no questions without just repeating back the question was something he'd been working on in therapy, yay!)

As we were walking into the store, we asked him why it was so important to park in the number 7 and he answered, "da mumber 7 Toby" (one of the Thomas characters). That was one of the early indications of how he grounded himself in numbers and made all kinds of associations from there... who else would think of a train from seeing a row marker in a Walmart parking lot?

We were so impressed that for the first time he'd actually offered some kind of explanation for his meltdown. I mean, clearly he'd wanted to park in row 7 but we had no idea why until he enlightened us. If we'd known that, we could have asked if parking in "number 5 James" would work since that spot was closer ;).

This new insight also helped with discipline in that we could tailor consequences more effectively. The typical stuff usually didn't work, so I wasted no time in putting this new little tidbit to good use. When Cuddlebug started acting up in the store later that day, I sternly told him if he didn't stop I was going outside to move the car OUT of "number 7 Toby." To my surprise, it actually worked! Mwahaha... score one for Mama ;).

~~~~~~~~~~~~~~~~~~~~~~

A few months later, shortly after he started pre-K, we got a sobering reminder of how limited Cuddlebug's ability to share his thoughts really was, even with his burgeoning verbal skills.

One night as I sat in Bitty's room rocking him to sleep, Cuddlebug came in to see me. I started asking him about his day, hoping to engage him in a little conversation.

I asked him about his friends in class, and he said something about hitting (I don't remember his exact words). Concerned, I asked if someone had hit him. His response was jumbled. His sentences tended to have the words "out of order" compared with how we would normally expect to hear them, the words he chose were often descriptive but unconventional (enough to require some detective work, his phrases made perfect sense once you figured them out but were often a bit of a puzzle until then).

I knew that due to his sensory sensitivities, he may have interpreted a touch or bump as "hitting" even if that wasn't the intent, so I was trying not to freak out. I asked him if he had told them to stop. There was no emotion in his facial expression or his voice when he answered with "das not great idea." He had picked up the phrase, "that's a great idea" from cartoons, and when he didn't like something, he'd change it to "that's not a great idea." My heart broke for him...

The next day, I talked to his special needs teacher, since he'd been in her class the day before (he spent Tuesdays and Thursdays in the special needs class and Mon, Wed, Fri in his regular pre-K class). Neither she nor the parapros had seen anything out of the ordinary, and I trusted that they kept a watchful eye (and it was a small class so easier to keep track) so I was confused.

It occurred to me that Cuddlebug (and Bearhug for that matter) had a way of putting events out of "sequence" when speaking. Kind of like writing down a sequence of steps, then mixing them all up and reading them out of order, and expecting the listener to figure out the correct order on their own. Not only that, but Cuddlebug didn't really have the words to communicate timeframes yet. Add in his stream-of-consciousness way of thinking and I realized that the events he'd told me about could have occurred at any time. I had assumed it was earlier that day, but in fact it could have been the prior day, week, even several months ago.

I talked to his Pre-K teacher and she confirmed that they had a couple of kids in class with hitting issues (they were in process of working with those kids and their parents) although she said she hadn't seen any incident with Cuddlebug.

Cuddlebug didn't give any indication - verbal or otherwise - that it was anything other than a one-time thing, so I let it go. It worried me though, to know how difficult it would be for him to let us know if anything ever did happen to him while we weren't there.

~~~~~~~~~~~~~~

On a more pleasant note... one last thought on Cuddlebug's obsession with numbers. At the end of the school year (pre-K), we visited Cuddlebug and Bearhug at school for their end of year party. While other children were eager to show off their desks, their artwork on the walls, and even the fish pond, Cuddlebug had other plans. He did show me the fish pond, but the main attraction on his personal tour was the smoke alarms.

You wouldn't notice them unless you were looking for them... or unless you were Cuddlebug. Each smoke alarm in the school had a small, unique number on it. He knew them all by heart. It was as though they were old friends, always in the same place, always with their numbers beckoning to him and guiding him throughout the school. He knew which number smoke alarm was closest to his classroom, which was near the media center, etc. I could be wrong, but I'm pretty sure I'm the only parent who's ever been given a smoke alarm tour at the school :).






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Monday, May 25, 2009

2nd grade awards :)

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Cuddlebug and Bearhug had their end of year awards ceremony this week. They both made the A honor roll again this 9 weeks (yay!). That makes the whole year with the exception of the two B's that Bearhug got in the first 9 weeks.

I snapped a couple of pictures of each of them sitting with their respective classes:

Cuddlebug


Bearhug


Bearhug rec'd an award for being on the A/B honor roll the entire year:


Cuddlebug rec'd an award for being on the A honor roll the entire year:


He's so cute, they held applause until all the kids receiving the award were up at the front, and when the crowd started clapping, Cuddlebug took a bow :)


Bearhug was less-than-thrilled at not making the straight-A honor roll like his brother, although we made it clear that we are extremely proud of both of them!

We checked them out after the awards and took them to lunch before picking up Bitty from school. At lunch we talked some more about how just because they are twins doesn't mean they are always going to do exactly the same on everything. There will be times when one does better one something, and times when the other does better. That's just life. We've had that discussion before, and I imagine we'll probably have it again...

I love how they're both squinting in the same way here :)


Bearhug felt better after we talked, especially after he learned that we got the results of their standardized test scores for this year and he scored a little higher than Cuddlebug on the math part ;). They both did great, with scores in the "exceeds" range on all three parts (reading, language, and math). They got the same exact score on the reading and language parts (ironically, they did the same thing on their benchmark tests at the beginning of the year). Obviously standardized tests are not the end-all, be-all of academic achievement, but it's still nice that they did well. I remember the day they took the math part of the test, Bearhug came home and told me, "There were 70 maf questions, Mama. Dat made me very happy." He loves math. Cuddlebug is quite good at math too, although I'm not sure if he has the same passionate zeal for it that Bearhug does. He tends to get more excited about reading, which is also good :).

Anyway, after our little chat, Bearhug got up and gave Cuddlebug a hug. He told him, "I'm really proud of you, 'Cuddlebug.'" So sweet!







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Summer is here & IEP updates

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Well, it's official. School is out for the summer. (If you're interested in a little mood music, click here). The boys will get a couple of weeks off and after Cuddlebug and Bearhug's birthday it will be time to start up summer homeschool.

I can't believe my two big guys are going to be third-graders next year. As Cuddlebug would say, "Can you beweive it?!" No, I can't!

They will be turning 8 less than two weeks from now. We have a lot to do between now and then, that's another post entirely.

IEP Update

We had some late-breaking changes to Little Bitty's IEP this month. When we originally met earlier in the spring, Bitty wasn't quite ready to make the move from a self-contained class (which he is in now) to more of an inclusion setting with "typical" peers. As the school year came to a close though, his teacher called to discuss again. She still doesn't feel he is quite ready for inclusion in a regular Pre-K classroom, but rather than keeping him in a self-contained class, she suggested that we put him into a head start class with NT 3-yr-olds.

The curriculum is not that different from the 4-yr-old pre-K class, so it should not be detrimental from an academic-challenge perspective but it will help with his social / communication development since he is closer to the 3-yr-olds in that area. Well, ok, realistically he is probably not yet where most 3-yr-olds are in terms of social / communication skills. But academically on nonverbal stuff he could hold his own with the 4-yr-olds and then some :).

The head start class will be taught by a special ed teacher, with a special ed parapro and either a regular ed teacher or parapro. So, he will still benefit from having teachers who understand his strengths and his needs and can help him have a successful school year. It is also a smaller class than the Pre-K classes, with 14 students (up to 8 NT and 6 with special needs) as opposed to 20 students in Pre-K classes.



Bitty continues to do well academically, with his strength being in nonverbal learning as you might expect. In fact, his teacher used the phrase, "like a genius" (her words, not mine!) to describe how quickly he learns when the subject matter doesn't require very much verbal ability. On the other hand, he continues to struggle quite a bit with subjects that are more reliant on verbal skills.

We'll see how it goes next year in the 3-yr-old class. This is going to take the place of his Pre-K year, as he'll still need to go to Kindergarten the following year. Whether he ends up going into a resource setting like his brothers or to a self-contained Kindergarten class is TBD, we'll have to see how he's doing at the end of next year. I'm ok either way. It's pretty clear that his delays are more significant than his brothers at the same age, so he may not necessarily follow the same path that they have, and that's ok. We just want what's best for him, and to find the setting that will give him the best opportunity for success.

No change to Bearhug and Cuddlebug's placement for next year (if it's working, don't mess with it!) although we did update their goals for 3rd grade.





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Sunday, May 24, 2009

Memorial Day

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Tomorrow, we honor the American service men and women who have given their lives in defense of freedom and liberty, here and abroad.

"Today, the United States stands as a beacon of liberty and democratic strength before the community of nations. We are resolved to stand firm against those who would destroy the freedoms we cherish. We are determined to achieve an enduring peace -- a peace with liberty and with honor. This determination, this resolve, is the highest tribute we can pay to the many who have fallen in the service of our Nation."

~~ President Ronald Reagan, Memorial Day 1981




"Only 2 defining forces have ever offered to die for you…. Jesus Christ and the American Soldier. One died for your soul, the other for your freedom."

~~ Lt. Col. Grant L. Rosensteel, Jr., USAF


To our fallen heroes, I offer my heartfelt thanks.





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Wednesday, May 20, 2009

Don't eat my breakfast!

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Little Bitty's speech consists of a lot of echolalia, repeating back what we say. For example, when we're encouraging him to say hello to someone and we say, "Say hi, 'Bitty'," he often answers, "Hi 'Bitty'"

There is also a fair amount of his speech that is difficult to understand. He adds a lot of "digga's" into his words, for example "tray-digga-depot" is "train depot."

And then there are times when his words are crystal clear. When there is no mistaking his meaning. And slowly but surely, sentences are emerging...

~~~~~~~~~~~~~~~~~~~

Part of our morning routine revolves around Pop-tarts. All of our boys love them, but Bitty is borderline obsessed. A Pop-tart can mean the difference between a reasonably good morning and a disastrous one. An empty Pop-tart box is cause for great consternation - tragic sobs and the agonizing refrain, "Paw-tarss AAWWW GONE!"

But I digress. My point was... the routine. Little Bitty likes to eat half of his Pop-tart in the car on the way to school, then leave the other half in the car so it will be waiting for him when dh picks him up after school. The other half of the Pop-tart makes a nice little afternoon snack :).

The other day as the teachers in the carpool line were helping him out of the car, they said, "tell your brothers bye."

But instead of telling them goodbye, or even repeating back, "brothers bye" he turned back to his brothers and advised them,

"Doh eat my breffast!"

If I had to guess, I'm pretty sure what he meant by that was something along the lines of:

"I'm warning you, anyone who dares touch my Pop-tart will have to answer to ME! Don't even THINK about it!" LOL






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Photo Contest & New Photo Blog

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You know what I really need? Another blog. Haha, yeah, probably not but I started one anyway :). I decided to start a new photography blog to share some of my pictures that I don't necessarily want to post here. Also, I love how Julie's pictures are always in large view on her blog and it looks great, and I can't really do that here without revamping my formatting, etc. which I really don't want to do.

The new blog is called "Everyday Photography" (kind of a spinoff of this one) and you can find it here: http://myeverydayphotography.blogspot.com.

My latest post there is a contest entry for I ♥ Faces.

The only other post so far is some pictures from our flower garden. More to come. I'd love to hear what you think.





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SEW & WW: Slinky

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This is what happens to slinkies at our house, within about 1-2 minutes:




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More pictures!

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Handsome Bitty - a rare picture without a Tommy (Thomas the Tank Engine) t-shirt. I tried this shirt as an experiment to see if he'd wear it for church, he did with no complaint!

I love this one, if you look closely you can see dh in the mirror on the other side of the car


He has a little bruise on his face from jumping out in front of Cuddlebug's bike - not a great idea










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Pictures!

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Brace yourselves, I finally uploaded pictures and I have a ton of them to share :). I'm just going to put them all in one post because it's easier.

Bike riding fun:


Cuddlebug


Bearhug




Tidmouth sheds at our house:



I love his expression here




Playing outside:


Cuddlebug


This is what Bearhug does now pretty much every time I try to take his picture





Mother's Day gifts:

Zinnias from Cuddlebug


From Little Bitty


Sleepy Bitty after a long day :)








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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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