Everyday Adventures

Halloween 2009

2009-11-12T00:47:00.010-05:00

Thanks again for your thoughts and prayers on Bearhug's behalf. We've also gotten some good suggestions... we're going to get this figured out. So far this week has been pretty good (yay!).

On a lighter note, here are some pictures and a recap from Halloween :).

I couldn't figure out how I was going to make a Salamence (Pokemon) costume, so we tried taking the boys to the Halloween store to see if they could find a costume there. No luck. I asked Cuddlebug what his second choice would be, and he named another Pokemon. Third choice? Another Pokemon. None of which are readily available as costumes.

And to add to the fun, Bearhug decided with just over a week to go that he wanted to dress up after all, as Garchomp (yep, also a Pokemon). So I headed to the craft store. I had some pictures from the internet to use as a guide of what the characters were supposed to look like, and I used the boys' clothes as a guide for the size / shape (being careful to err on the side of "too big" rather than "too small").

Here are the finished costumes, with the characters' pictures:

And the boys wearing their costumes. They were so excited to dress up as Pokemon :).

Bearhug as Garchomp:

Cuddlebug as Salamence:

And you can't dress up as Pokemon without having a Pokemon-battle, of course :)

Little Bitty was not at all interested in costumes or trick-or-treating. We did, however, discover that he loves to eat "M's" (M&M's). :)

So I took Cuddlebug and Bearhug out trick-or-treating.

Bitty stayed home with dh to hand out candy. When we made it back to our house, we found him relaxing, curled up with a blankie (they were in the garage which dh had decorated for Halloween).

Bearhug and Cuddlebug went inside to check out their stash. They sorted all the candy by type and lined them up in rows.

Bitty was curious and came over to inspect the candy too. Here all three of them are busy counting. There were 153 pieces of candy in total :).

Cuddlebug did the math the next day to figure out how many days the candy would last if each of us ate one piece each day... but we haven't exactly done that ;).

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Veterans Day

2009-11-11T22:45:00.008-05:00

A heartfelt thank you to those who have served or are serving in our military (which includes many of our family members). Freedom isn't free, and I am eternally grateful for the courage and sacrifice of our armed forces who defend freedom here and abroad.

~~~~~~~~~~~
And for my favorite veteran...

(that's my dad for those who don't recognize him, this was taken in Iraq during Desert Storm)

... here's a cool video I found online that I thought you'd enjoy :)

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Still here... and an update

2009-11-08T21:49:00.000-05:00

I feel like I've kind of gone AWOL from the blogosphere for a couple of weeks, but I wanted to say thank you for your kind words, suggestions, and encouragement in response to my last post.

Bearhug is still struggling and we have no idea why. It feels like we are in new territory here... at first I thought it was a result of sensory overload / stress but now I'm thinking it may be more than that.

Whatever it is, it has really escalated in the last few weeks. We're seeing a lot of anger, rage would be a better description really. Aside from that he seems kind of sullen, even sad. I spoke with his resource teacher and the parapros that work with her, they're seeing similar things at school. He had a pretty intense outburst at school this past week.

Sundays are the worst. Two weeks in a row he took off running at church and went missing. We found him hiding in the bathroom both times, but talk about stress! The first time I was fighting panic, not sure if he was even still in the building or not. Several people helped me look (dh was teaching a class and didn't know about all this until after Bearhug was found), and he finally turned up in the bathroom. He had his feet up so no one would see him and wasn't answering when we called out to him, but the second time someone checked, they spotted his shirt through the crack in the stall (Bearhug later said he hadn't had time to cover up the cracks with toilet paper... ugh).

The second time at least we knew to check the bathrooms and sure enough that's where he was again. Once he was found, he refused to come out and instead stayed in there screaming at the top of his lungs. We've tried to accommodate him by taking turns taking him outside for walks, but it doesn't seem to be enough.

His teacher said he has made comments about feeling worthless, and since then he has made a couple of similar comments at home. She suspected it might be the influence of the "Diary of a Wimpy Kid" books, which he really seems to be taking way too seriously. He admitted that sometimes those books make him feel bad - and although I don't really think the books are the cause of the problem it's possible they were making it worse, so we took them away for now. They're supposed to be funny (I read the first one and actually thought it was cute... but what do I know?).

Some of his behavior seems to have an attention-seeking element to it (he'll do something he KNOWS he's not supposed to do and look around to see if anyone notices), but giving him extra attention (not rewarding the bad behavior, but going the extra mile to give him praise, etc. when he's doing good) doesn't really seem to be helping. In fact, today when I told him I was proud of him for his grades at school this week (after looking through his weekly folder), he got upset with me.

Yesterday, he really scared us when he took off running and hid in the neighborhood. It's the first time he's done anything like that before. I mean, we had to watch him like a hawk when he was younger because he would run off but it was different... he was usually intrigued by something or he just wanted to run, he wasn't necessarily trying to get away from us. Yesterday, that's precisely what he was doing, and it was dark outside and I'm not sure even now he really understands how dangerous it was to do that.

He was coming home from playing with his friends (two doors down across the street) and I asked him if he was hungry. Dh told him I had ordered pizza and asked if he wanted some. He lunged at dh and then took off running past our house. I heard him banging on the back door and went to open it, and by the time I got the door open he was nowhere to be seen. I thought he was just messing with me and went back to the front door, but dh (who was across the street) said he hadn't come back around and thought he'd gone into the house. At that point we had no idea where he was, but it was getting dark. There's a bunch of trees behind our house and I was worried he'd gone in there. Dh grabbed a flashlight and went to look for him while I stayed with Cuddlebug and Bitty. I watched for him out the door. The boys he'd been playing with helped look for him, and dh was about to round up the neighbors to help too, when they spotted him. He'd been hiding behind one of the houses nearby :(. He was clearly upset, resisting coming into the house and trying to run away again. When he came in, he ran up the stairs, hid under his blanket, and was crying, refusing to talk to us. We finally convinced him to eat dinner, and then he seemed to feel a little better, but a while later he was upset again and tried to run outside again. Luckily he wasn't trying too hard, and I was able to keep him inside without a huge blowout.

A while after that, he was complaining of nausea and dizziness and wanted all the lights out. He said he'd been "exercising" trying to get "those things in your stomach, I can't remember what they're called," (turns out he was talking about "abs") pretty much the entire time he'd been playing that day. I think he overdid it and actually made himself sick. It almost seemed like a migraine but he didn't say his head hurt other than feeling dizzy ("it feels like I'm moving but I'm not").

The only answer we could get from him - then and even today - was that he didn't like the questions we asked him. What horrifying questions did we dare to ask? The ones about "are you hungry" and "do you want some of the pizza your mom ordered?" Maybe he wasn't feeling well from overdoing it and something that simple was all it took to set him off. I don't know.

I am really at a loss here. It is heartbreaking to see him going through this and not knowing what "this" is, or how to help him. The bad days are exhausting - emotionally and physically - and the good days it feels like we are walking on eggshells trying to keep the peace. Every time he has a couple of good days in a row I start thinking maybe things are looking up only to get socked in the gut with a day like yesterday.

Someone mentioned hormones, and it sounds strange but I've done some reading and apparently pre-puberty hormone changes can have a significant impact on children with autism, as early as 7-9 yrs old. Maybe that's at least part of it, I honestly don't know. He is having mood swings like we haven't seen before.

He was cranky today... but this evening he seemed to be feeling a little better. He let me sit with him and we read some books together. It was nice :).

We have a checkup scheduled for him and Cuddlebug a week from tomorrow, maybe his doctor will have some ideas. His resource teacher has been really helpful, she is awesome. She's been working with him since Kindergarten so she knows this is not like him.

I'm open for suggestions... and if you're inclined to pray, a little extra prayer for Bearhug would be greatly appreciated.

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Sensory stuff

2009-10-26T00:05:00.000-04:00

So I just wrote a long, rambling post (in draft mode) trying to sort out my thoughts about the sensory challenges we've been having lately, mostly with Bearhug. When it comes to classic autism, his is the mildest of my three boys (with Bitty the most affected and Cuddlebug somewhere in the middle), but Bearhug's sensory challenges are the most severe of my three. He is really struggling lately - at home, school, even church. It seems to be a combination of overstimulation, various changes in the routine, difficulty focusing, and somehow just general out-of-sync-ness (to borrow the term from this book).

There are a few possible "triggers" but it's hard to tell if those are actual causes, effects, or just exacerbating what would still be there regardless. I don't think it is just one thing, it seems more like one thing after another after another... and when he's overwhelmed his ability to effectively communicate is impacted, so we're trying to piece together what clues he is able to give us. We're doing our best to help, and to be patient in the process, but I have to admit to feeling a bit at a loss.

Today was a rough day.

I was in this frustrated state of mind (and recovering from a migraine which I think is probably directly related to today's misadventures) when I read this post from Patty at Pancakes Gone Awry... if you have a child with sensory issues it's an encouraging read. I can so relate to what she describes with her son, and she's right, it does get better. Reading her post reminded me of just how far each of the boys has come so far. And not only that, if they've made that much progress up to this point, I have to believe that although we may be at a bit of a rough patch right now, more progress is yet to come and we will find a way to help them work through their current challenges.

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Magic Marker Monday: Flowers

2009-10-26T00:03:00.001-04:00

Bearhug brought this home from school. It looks like it may be of the same vase that Cuddlebug painted at school but it's interesting to see how different Bearhug's interpretation of it was :).

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

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Cuddlebug and Bearhug on the go

2009-10-24T12:01:00.003-04:00

Some pictures from our trip:

Cuddlebug enjoyed the view from the window of the train at the airport, while Bearhug was focused on his pizza :). We encountered lots of big escalators at the airports (we visited three that day). Cuddlebug insisted on riding the escalators, while Bearhug was terrified of them, so we compromised by letting Cuddlebug ride up and back down, and then we all took the elevator together.

We went to a pizza / game place where the boys had fun riding bumper cars (great for sensory-seekers!) and playing air hockey.

They got tired of hitting the puck back and forth and decided it was more fun to "throw" their handles at each other, lol.

My dad took us on a brief tour of the hangar where he works. The boys got a sneak-peek at the plane insides without all the seats and "trimmings."

And a visit to the park for some low-key fun. We were trying not to overdo it.

There were lots of ~~groundhogs~~ prairie dogs at the park :).

Cuddlebug buried a pack of "Smarties" candy in his volcano.

Then he was off to join Bearhug at the prairie dog field.

They walked around the entire perimeter of the field on the wall. When they got to going too fast, I told them to stop running. Cuddlebug responded, "we're not running, Mama, we're power-walking!" lol

On our way back to the car, Bearhug couldn't resist splashing in a puddle.

A little worried about overstimulation, we took the boys to pick out some Pokemon videos for some downtime.

The videos helped but it was not enough to prevent a rage of a meltdown, the likes of which I haven't seen from Bearhug in years. He stayed in control so well until one little thing set him off and it was downhill from there. No sense going into details... but it was worrisome because he's so big now I was afraid that he'd hurt himself or someone else or do some serious property damage but thankfully we all made it through ok.

After that, we pretty much stayed at the house the rest of the trip. The boys had fun playing with airplanes, and Bearhug enjoyed having Python attack the various planes, like this. He liked it when I took pictures of them like that, so I have a bunch of these with different planes. Aren't you glad I didn't post them all? hehe

And then it was time to go home.

We nearly had a repeat of Bearhug's meltdown when we found that Pizza Hut at the airport was closed during our layover (and I had told him we'd get pizza). So I assured him we'd get one when we landed at home before heading out to the car and he was able to stay in control (thank goodness because we were starting to attract stares and I was worried they wouldn't let us board the plane if he didn't calm down).

In the air we saw huge billowy clouds and blue skies, but on the ground it was back to rainy, grey skies.

As it turned out, the terminal we landed at does not have a Pizza Hut, and no other pizza would do (sigh) so we had to go on a quest for Pizza Hut before we could go find the car and go home. Of course it was the opposite direction of where we needed to go. We finally found it. That in itself was no easy feat - the airport was VERY crowded at that point, and to top it off Cuddlebug was insisting on pushing the suitcase (on rollers) for me and no matter how many times I told him you're supposed to pull it because it's easier, he was obstinate about it (and have you ever tried to push one of those things? It goes everywhere! not good in a crowded airport!). I was pulling my hair out, but we weren't really in a rush at that point and I knew they were both at their limit in terms of overstimulation, so I just took a deep breath and tried to keep the peace.

Anyway... so this one was taken on the underground train in our pizza quest.

And we had a breakthrough - Bearhug finally worked up the nerve to get on the escalator. I was really proud of him, I know how difficult it can be to overcome our fears. And he didn't just get on any escalator, he got on THIS one, which is huge and really messes with your visual sense of perspective for some reason.

All in all, it was a good trip and a relatively successful "experiment." We've been "paying" for it for the last couple of weeks because much like any vacation, the combination of overstimulation and change in the routine takes a while to work its way out of their systems. But it was great being able to go visit my parents for a long weekend and it was nice to have some one-on-one (or two) time with Cuddlebug and Bearhug, although I missed dh and Bitty while we were gone. It was also all the evidence I needed that we need to wait a long while before trying to take Bitty on a flight ;).

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Social story: Airplane ride

2009-10-23T23:02:00.008-04:00

I made this for the boys before our trip, thought it might be helpful to share.

New experiences, however fun or exciting, can be really stressful for Cuddlebug and Bearhug so the goal of this was to walk through what to expect step-by-step. With flying, I knew there would be a lot of steps involved and wanted to help them transition as smoothly as possible from one area to the next as we went through the process of getting checked in, going through security, finding our gate, waiting, boarding, etc. The fewer surprises the better :).

I put the pages together in powerpoint and then printed them out with each slide taking up half a page. Then I cut the pages and stapled the edges to make little booklets. They didn't actually spend a whole lot of time looking at the booklets but having thought through all the steps helped me to be prepared to talk them through everything as we moved from one step to the next.

If anyone wants the .ppt file so you can adapt it for your own family just send me a note or leave a comment, I'd be happy to share it.

UPDATE:
The .ppt file has been uploaded to google docs, you can view and download it here:
Airplane Ride Social Story

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Alex Barton Update

2009-10-23T07:55:00.003-04:00

As you may remember, Alex Barton was the little boy whose teacher had him "voted out" of his kindergarten class by his peers. He is now an honor student at another school that is obviously doing a much better job of meeting his educational needs.

I saw this on Fox & Friends yesterday, I am really glad to see that he is doing well. And he was cracking me up doing "thumbs up" and big grins (to the cameraman?) while his mom was talking :). What a cutie!

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We're in luck! Thomas clothes in bigger sizes

2009-10-16T23:07:00.003-04:00

Just wanted to share this for anyone else who may be in a similar predicament, as well as for my own reference so I don't lose it :).

~~~~~~

I'm pretty sure I have commented before about how Bitty will only wear clothes with Thomas on them. And how we have up until now been unable to find Thomas clothes larger than size 5 (and those are hard enough to come by). His 4T's are getting small, and his size 5's won't be far behind. Just a matter of time...

Well, it looks like we'll be able to delay the inevitable for a few more years, and hopefully by then he will have broadened out his "acceptable clothing" list to include non-Thomas attire.

I found a site called Totally Thomas that carries Thomas shirts up to size Youth Large (12-14). Granted, there's not much selection that big, but there are a couple... and there's a decent selection up to child size 7.

AND there's more... they also carry Thomas underwear up to size 8. How cool is that? I've never seen anything above toddler sizes at the store.

Amazing how something so seemingly mundane has really made my day, but I know ya'll know where I'm coming from! ;)

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Where in the world have we been?

2009-10-14T07:50:00.004-04:00

Ok, I guess it hasn't really been that long but it feels like a long time! Here's a hint:

Yep, I took Cuddlebug and Bearhug for their first plane ride... we went to visit my parents for the long weekend. Dh and Bitty stayed home. We aren't quite ready to put Bitty on a plane yet (we don't want to end up on the news for getting kicked off a plane). Maybe when he's 8... we'll see.

Overall, the boys did great, I'm really proud of them! More to come soon, and I'll hopefully get time to catch up on all of your blogs this weekend :).

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SEW & WW: Like Uncle, Like Nephew

2009-10-07T00:01:00.001-04:00

When we were kids, my younger brother used to go running to look at airplanes whenever he heard one flying overhead, which was pretty often because we lived on an Air Force Base. If we were inside, he ran for the window :).

That memory came to mind this past weekend when the boys and I were in the garage (with the door open) and we heard an airplane flying by. Bitty perked right up and went running outside to catch a glimpse of the plane:

Click here for more Special Exposure Wednesday. For more Wordless Wednesday, click here or here.

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Potty training update :)

2009-10-05T22:31:00.008-04:00

I waited a few days before posting this because I wanted to be sure this time, but I think I can safely say that Bitty is now officially potty-trained :). At age 4 1/2, it took him about a year longer than it took his brothers (they were about 3 1/2, finished potty training not long before Bitty was born), but the process was much less messy with him so I have no complaints. ;)

After he did his #2 business in the potty that one time, we hid the pull-ups. I admit I started to question that strategy when he got really upset and decided to hold it rather than use the potty. He figured out that he could wait until bedtime and use his bedtime pull-up (because he's not always dry at night so we always put a pull-up on at bedtime).

But it wasn't long before he got tired of having to wait and decided the potty wasn't so bad after all. That, and he decided our offers of chocolate made the effort worth it, even though that didn't work before.

So whenever he went, he'd come running running to tell us,

"You di' gwayjah poop-ah-da-paw-yee, you geh CHWOCWIT" (you did a great job pooping in the potty, you get chocolate."

That's quite a sentence, huh? He can do that when he's repeating something he's heard, and of course he was telling us what he expected us to say, hehe.

We did, in fact, reiterate what a great job he did and offer him a little chocolate (he's partial to the "red" chocolate, the plain Nestle mini's that come in a red wrapper).

In fact, for a little while there I thought he'd figured out how to "game the system" because he'd do a little bit of #2 in the potty, ask for a chocolate, and then do a little more and want another chocolate... like he was trying to spread out his business to maximize the chocolate, lol.

Anyway, I noticed that today he didn't ask for any chocolate, so I guess it's becoming "old hat" for him now :). He WAS pretty impressed with himself for waking up dry this morning though, and we haven't made a big deal out of that yet. His conversation with himself (heard while I was half-asleep because it was the crack of dawn) went something like this:

"Iss 'Bitty' weh o' dwy? 'Bitty' iss dwy!"
(yells loudly) "GWAY-JAH 'BITTY'!!!"

He is his own best cheerleader, it's so cute to see him cheering himself on :). Obviously he's internalizing what he hears, both from us and from his teachers at school, and it's great that he recognizes on his own when he did something good.

Anyway, so the next step, as he already decided on his own, is to work on staying dry all night. He still likes a cup of chocolate milk to help him relax at bedtime though so we're not going to push that one for now. It's not entirely realistic to expect him to stay dry at night until he's ready to give up the bedtime drink. Another goal for another day - for now I'm just enjoying the newfound freedom from pull-ups during the day :).

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Kreativ Blogger

2009-10-05T22:06:00.001-04:00

Kajoli of Floortime Lite Mama was kind enough to nominate me for the Kreativ Blogger award. If you haven't read her blog, go check it out! She has an adorable little boy whose progress I love to read about, and she shares a lot of great insights and inspiring thoughts along the way :). Thanks, Kajoli!

For those of you who don’t know how these shameless bits of linky love work, here are the rules:

• You must thank the person who has given you the award.
• Copy the logo and place it on your blog.
• Link to the person who has nominated you for the award.
• Name 7 things about yourself that people might find interesting.
• Nominate 7 other Kreativ Bloggers.
• Post links to the 7 blogs you nominate.
• Leave a comment on which of the blogs to let them know they have been nominated.

7 things about me that you may find interesting

1. I am a pack-rat but don't always have time to really get organized, so I have lots of stacks of papers and things. I make it a point to keep them out of sight for the most part (in closets, boxes, and drawers), because dh will throw away anything left out (don't get me started on the things he has thrown away because it "looked like trash")

2. I have enjoyed photography since I was a teenager, but am really getting into it since I got my cool new camera a few months ago :)

3. I stopped taking quite as many pictures during holidays though because I started to realize I was spending more time capturing the events than participating in them and missing out on a lot of the fun.

4. It has taken me 2 weeks to fill out 4 questionnaires that the school sent home for Cuddlebug and Bearhug (2 each, part of updating their evaluations).

5. Those questionnaires drive me nuts because I spend way too much time overthinking the nuanced differences between answering "never," "sometimes," "often," or "always." What if it's really rare but it's not quite "never"? Or where do you draw the line between "sometimes" and "often"? ugh.

5. Speaking of forms, sometimes I wonder if people think it's weird when they see 3 boxes checked in the "ethnicity" question. I'm 1/2 Hispanic and dh is 1/4 Asian (Japanese), which makes the boys 1/4 Hispanic, 1/8 Asian, and 5/8 Caucasian. I always feel like if I don't check all 3 boxes I'm somehow denying part of their heritage, so I do.

6. I LOVE angel food cake :). And red velvet cake, yummeh. Ok, I love pretty much any kind of cake :P

7. I found out the hard way when I went to college that when it snows all the time it's no big deal and nothing closes. What good is snow without snow days? I was glad to move back to warmer regions :).

And I actually wrote this post a couple of weeks ago and had to save it for later to come back and make a list of 7 blogs to pass the award along to... but here we are two weeks later and I really haven't had time to do that yet so in the interest of getting this posted sometime before Halloween I decided to open it up for whoever among my readers would like to participate. If you do, please leave your link in the comments, I'd love to read your 7 things and get to know you a little better!

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It's official

2009-10-05T19:58:00.002-04:00

It's the first Monday of the month again (time flies!) and I didn't forget this month, but I didn't have time to put a video together. With everything going on it's getting tough to keep up with it so I've decided to officially discontinue Mondays in Motion for the time being.

Thanks to all who have participated over the last year or so that it's been going :).

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October is Sensory Awareness Month (Updated)

2009-10-04T23:00:00.001-04:00

October is Sensory Awareness Month, so I decided to share a few resources relating to Sensory Processing Disorder. As I have mentioned before, our boys each have SPD along with autism, although it is possible to have one without the other.

Resources:
Sensory Processing Disorder - Tons of info on SPD including a long list of things to watch for
SPD Foundation
SPD Foundation checklist

Update:
Cale at Spectrum Siblings has posted some links to his past posts relating to Sensory Processing Disorder. His posts are insightful with personal experience as someone with autism who also has a brother with autism and works with children on the spectrum as well.

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"I am me and I have autism"

2009-10-02T23:10:00.003-04:00

There's a new video out from Autism Speaks called "I am Autism." I'm not going to embed it, but you can see it here.

The video has stirred up quite a furor among the autism community, so you may have already seen it. I first saw it a little over a week ago when it was posted to one of the mailing lists I'm on. I'll be honest - I didn't like it. I really didn't like it. I don't like how it portrays "autism" as some kind of malevolent entity actively and purposefully trying to destroy our families, our children, our marriages, our lives. As if "autism" was the devil incarnate. That's how the voice makes it sound. The second part of the video talks about how the love of parents / families is stronger than autism, which is fine, but again, it's presented as the families fighting against some sort of evil entity.

I wasn't going to post about it - after all, much has already been said both for and against the video. And although I didn't like the message of the video (as I interpret it), I don't begrudge those who interpreted it differently and felt that this video spoke to them.

My main reason for posting on it is that I wanted to share this response that was posted to the same mailing list where I first saw the video. The woman who wrote it is a musician who has autism, and I really appreciated her perspective. The last part is especially beautiful. I share it with her permission.

"I have encountered many road blocks that are thrown in my path, many thrown by not just those who think I can't, but by those who are afraid I can (maybe better than they). It is true that autism makes for very frustrating days but not just because I struggle to speak. Often times it is because many don't listen to what the quiet in me has to say.

What about this "wall I live behind" does it need broken down? No, I just need people to be brave enough to climb the wall and see me. This wall is my protection from a world that is widely judgmental of the odd, but if you take the time you might see the world through my eyes. I understand that this gets harder to see in those where autism is louder than our personality traits but just like anything that requires faith in this life, you just have to believe that a vibrant personality lives inside those with autism ... and in those brief moments when personality and autism sing together in harmony, you the normal will learn from autism.

No matter how "well-adjusted" I am seem or how many social rules I have learned, I am still lonely and sad. Why? I learned to play by the rules I was taught was normal, so why am I so lonely? It is because social rules are nothing but a script of hollow actions for most of us with autism. We learn the rules because it looks better to the NT world and often gets us more of what we want. Yet the essential need is left empty because when people look at me, they see autism that ate me up and robbed me from my potential.

Listen to me play my song to you through my special interest and you will no longer be convinced I am the one in need of a cure. With autism, I can dance everyday even when there is no music playing. With autism, I can shut the world out and hear only the trees and the sky and the earth. With autism, I care about the world so much that pretending seems mean when I know I can be truthful. I am not autism. I am me and I have autism."

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Halloween is right around the corner...

2009-09-28T00:25:00.000-04:00

...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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Messages

2009-09-23T23:12:00.016-04:00

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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Magic Marker Monday: Vase

2009-09-21T00:01:00.000-04:00

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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Random Updates: Singing, Spelling & Scouts

2009-09-20T21:58:00.008-04:00

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:

Train
Pokemon
Dog
Cat
Cow
Goat
Coral
Milk
Wave

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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Houston: We have poop!! (Updated)

2009-09-18T08:00:00.003-04:00

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!

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

Update:
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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Special Exposure & Wordless Wednesday

2009-09-16T08:16:00.002-04:00

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

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Blog Carnival at TherExtras: Messages

2009-09-16T08:12:00.002-04:00

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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Baby Picture Sunday: Toes!

2009-09-13T07:00:00.006-04:00

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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How do I explain?

2009-09-12T23:27:00.002-04:00

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:

Related:
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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Remembering Grandma Marian

2009-09-11T14:29:00.009-04:00

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

2009-09-11T08:43:00.006-04:00

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.

Twins in the Womb

2009-09-08T23:23:00.000-04:00

This is too funny :)

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Mondays in Motion #18: Pokemon

2009-09-07T18:43:00.000-04:00

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

2009-09-07T14:24:00.003-04:00

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?"

"Pay"

"Do you want me to open this?"

"Opeh"

"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

2009-09-07T00:09:00.000-04:00

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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Baby Picture Sunday: Holding Hands

2009-09-06T03:08:00.007-04:00

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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The silent treatment

2009-09-05T23:30:00.001-04:00

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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SOOC Saturday: Working together

2009-09-05T16:36:00.002-04:00

The "big boys" all doing yardwork together:

while Little Bitty supervises ;)

For more SOOC Saturday, visit Slurping Life.

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Interpreting Bitty

2009-09-01T01:59:00.002-04:00

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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Magic Marker Monday: A splash of color

2009-08-31T07:43:00.000-04:00

Little Bitty brought these paintings home from school. My favorite is the first one - which was titled "Flowers." :)

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Four-giveness

2009-08-30T06:15:00.000-04:00

A few weeks ago (the week that Bitty did great in church), his class learned about forgiveness. At the end of the lesson, his teacher had each of the children practice saying the word to help them remember what they had learned about.

She broke it down since it's kind of a big word:

"For-"

"-giveness"

The next week, I wondered if he still remembered so I asked him what he learned last week. He needed a little prompting but then he repeated back:

"for-gibness"

"Good job!" I told him.

Then, with a smile, he continued on:

"Fie-gibness... sih-gibness... sebuh-gibness..."

"Nie-gibness..."

"Elebuh-gibness..."

I couldn't help but laugh, he was counting. I guess it makes sense, if you're thinking the "for" at the beginning is actually a "four," lol. I wonder if he's expecting a follow-up lesson on "twelve-giveness"?

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I tried, I really did...

2009-08-29T23:14:00.001-04:00

Have you ever made a mistake, a miscalculation that you didn't realize until it was too late? It's a little embarrassing to admit it, but this happened to me last week at the fishing event. Dh and I split up, with him taking Bitty to rest and wind down for a bit in the shade while I took Bearhug to fish. Cuddlebug was nearby in the bouncy house.

As Bearhug and I approached the fishing area, I saw the cooler filled with bait next to the fishing rods and realized my mistake.

Someone was going to have to bait Bearhug's hook.

That's dh's job, I don't do worms. Ick.

But dh was too far away now to swap. I pondered the best way to handle things as we took our rod and bait over to find a spot to fish.

I know... I'll talk Bearhug through it. ;) He tried, but couldn't quite get one of the wiggly worms out to attempt hooking it. Thankfully, there was another dad nearby who offered to help him. (yay, thank you!)

Whew! Dodged a wimpy-mom bullet that time. We didn't catch anything, so there was no need to hook a second worm.

A while later, it was Cuddlebug's turn. Only this time, there was no one else nearby to help. Again, I tried to talk Cuddlebug through it.

Due to his sensory issues, he didn't really want to touch the dirt. He tried digging for a worm using a piece of dried grass that he found nearby. Unfortunately, dried grass is pretty flimsy so it wasn't working so well.

I took a deep breath and offered to help him. After all, I'm a mom of three boys, I should be able to handle a few little worms, right? (For the record, I have no problem seeing worms, and could probably touch one for a microsecond w/ no problem, but the idea of holding onto a wiggly worm just freaks me out).

I gave myself a mental pep talk, running through a list of "tough" things I have done in my life. I gave birth to three children, for one thing, two in one day even (hehe)! I climbed up and walked on the ropes in the trees with my fellow MBA students (darn skippy I did! heights always look so harmless until you get up there...). I held my friend's boa constrictor in middle school and I wasn't even afraid of him (then again, snakes aren't actually slimy)! You get the idea... surely I could handle a measly little worm, barely the size of my finger. Right?

I steeled myself and plunged my finger into the dirt, wanting to get this overwith as quickly as possible. And I happened to pick the Bruce Willis of worms (yippee-ki-yay!). I'm serious, he came flying out of there (causing both Cuddlebug and me to jump) and landed next to the little tub of dirt, doing a fierce "you-wanna-pieca-me? FREEEEDOM!!!!" worm dance.

Now, I'd like to think that had that worm just flopped calmly I could have handled touching him long enough to hook him. But what self-respecting worm would go down without a fight?

Cuddlebug and I were crouched on the ground, staring at the worm. I was about to try poking it with the hook without actually touching it, when a kind grandfatherly man appeared behind us and asked if we needed help.

YES!! Thankyouthankyouthankyou! is what I was thinking. What I actually said was a little more nonchalant, "Sure, I'm kind of new to this..." Ya think? :)

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Fishing Fun Day

2009-08-29T12:52:00.012-04:00

Each year a local organization hosts a fishing day for children with autism and their families. We always have a lot of fun (and last year Cuddlebug even caught his first fish!). This year they also had a pony ride, which Cuddlebug LOVED :). Here are some pictures:

Bitty fishing

Bearhug found a feather :)

Bearhug fishing

Cuddlebug on the pony

Cuddlebug at the end of his pony ride

Bearhug & Cuddlebug fishing

Cuddlebug fishing

Watching for fish :)

Mr. Bitty

More pictures are posted here.

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"Molly was sad"

2009-08-28T23:04:00.000-04:00

I recently found myself sitting with Bitty next to a little baby, who was sitting on his grandmother’s lap. Bitty surprised me by taking a mild interest in the baby – typically he doesn’t show much (if any) interest in other children (other than his brothers). At one point, the baby started to fuss a little. Bitty took notice, and looked back and forth from the baby, to his grandmother, to me, with a curious expression.

He looked at me with a mock-sad face and said, “Mah-ee wa’ sad.”

Translation, “Molly was sad,” a line quoted from one of the Thomas stories. Then he imitated the sound of the baby’s fussing (he likes to imitate both words and sounds), looking at me.

I was a little worried that the grandmother might be offended by Bitty imitating her grandchild, but if she noticed she didn’t seem to mind. Maybe she didn’t realize that’s what he was doing, more likely she was too busy taking care of the baby to even notice. :)

For my part, I was impressed that Bitty was showing an interest in other children and that he noticed and correctly interpreted the baby’s fussing. Yay, Bitty!

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Scouts tonight

2009-08-26T23:10:00.000-04:00

Cuddlebug and Bearhug attended their first Cub Scout meeting tonight, and it went pretty well :). Cuddlebug was less-than-enthused yesterday when we brought it up, but today he was excited to go. He was really into it and even volunteered to participate in the flag ceremony (carrying the US flag) :).

On the flip side, Bearhug was excited yesterday but a little antsy about the whole thing today. He ended up being overstimulated and having to leave the room for a while, I took him for a short walk outside until it was game time, then coaxed him back into the room.

The parents went into a separate room for a quick orientation / info session, and I was nervous the whole time wondering if Bearhug was doing ok, but when we got back, both he and Cuddlebug were having a blast! They didn't want to leave, and they're excited to go back next week :).

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Full of surprises!

2009-08-25T00:03:00.004-04:00

So Sunday we had a rough day at church. Without going into all the gory details, it involved one major meltdown, a couple of smaller ones, a lot of over-stimulation, and a certain little boy almost getting stepped on a couple of times while rolling on the floor.

We also learned that while the seat-belt clip does in fact keep Bitty from unhooking his seat belt while driving, it does nothing to prevent him from squirming his way out of the seat belt altogether. Sigh. We had to pull over so I could jump into the back to keep him in his seat. Oh, and I'm really, really, thankful for child safety locks on car doors.

Anyway, on a brighter note, we had a few minutes at the beginning of primary where Bitty was actually sitting in his chair and semi-paying attention. Every week they have one of the kids read a scripture and then everyone repeats it along with them.

Well, Bitty heard everyone saying the words together so he tried to join in, only I noticed he wasn’t saying the same words. I listened closely and heard "Ameh-ca... un nay-shuh... iddizibul..."

I thought to myself, is that what I think it is?

I listened some more... "justih fo’ aww"

Sure enough, he was saying the Pledge of Allegiance. :) I don’t think anyone else caught it, but I was beaming – he was doing his best to participate and wow, he actually knows the entire Pledge of Allegiance!

I got him to say it again at home for dh and I took a video. He pronounces things in his own way, but I think he's got some pretty good approximations for some of those big words, no? Here it is:

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Magic Marker Monday: Summer

2009-08-24T08:22:00.004-04:00

Bearhug brought this home from school last week, just wanted to share because I love the things he thinks of, and that he is not shy about his talents :).

(Click to enlarge)

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

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Random notes from the week

2009-08-23T23:42:00.001-04:00

Bitty is learning to spell! And more than just Thomas character names ;). He's figured out that letters make up words, and he's become very interested in learning the letters for his favorite words. Here's a few:

O-R-E-O (that one took all of 1 minute to learn, he was motivated!)
N-E-S-Q-U-I-K (on the chocolate milk container)
T-A-R (one of his trains is a tar car, I found that one spelled out on the fridge too)

We're working on "water" now. He knows the first letter :).

~~~~~~~~~~~

I decided to hold off taking the boys to Scouts until this coming week, because last week's meeting was going to be combined with another Scout pack. I was concerned about the large group and overstimulation, and figured we had better odds of having a good first experience with it if we waited until it was just the smaller group. So, the boys will start Scouts this Wednesday.

That reminds me, I still need to sew the pack # patches on their shirts...

~~~~~~~~~~~

"Go-go-bums" (Bitty's pronunciation of "Golden Grahams") has evolved to "go-gree-brams." Getting closer!

~~~~~~~~~~~

Cuddlebug & Bearhug told me they know all 493 Pokemon - in order - from studying their Pokemon handbook. I can ask them any Pokemon and they can tell me who comes directly before and after that one in the book. They can also tell me all about each Pokemon's stats - weight, gender, best moves, which other Pokemon they will be weak to or able to defeat in battle, etc.

I am amazed but not surprised... they have always had such impressive memories. Now if only I could learn them all so I could hold my own in conversation :).

~~~~~~~~~~~

I have noticed Bitty reciting entire scenes from Thomas videos lately. I can't quite make out everything he says, but enough to tell what he's doing. The parts I can understand are word-for-word and I suspect the rest is too. Complete with sound effects :). He's gotten pretty good at imitating sounds.

The other night we were watching the news and he let out a little shriek, imitating a woman screaming on tv (it was one of those home security system commercials). He clearly didn't understand the "scary" nature of the commercial, because he giggled about it. My older boys didn't quite seem to get it either, because Cuddlebug asked curiously, "shouldn't she close the door first?" when she bolted up the stairs to answer the ringing phone (the security guy calls as the would-be intruder runs off).

~~~~~~~~~~~

After getting in trouble for being disrespectful last night, I gave Bearhug one last chance (he was about to lose his game privileges):

"You can say sorry and keep your game time, or you can go straight to bed. You choose." It seemed like a pretty obvious choice to me, but apparently he wanted door #3.

"Can I be sucked up into the vacuum cleaner?" he asked with an exasperated tone.

?!? "Uh, no. No, you can't be sucked up into the vacuum cleaner."

"Yeah, 'Bearhug,' because you're too big!" Cuddlebug chimed in. (so helpful, huh?)

It kind of went downhill from there. He did eventually come downstairs and apologize though.

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

Part of Bearhug's crankiness was over-stimulation from the fishing event we went to yesterday. We all had fun, but we paid a price for it because two out of three boys were ornery all weekend from over-stimulation (Bitty and Bearhug).

More on that later, along with pictures (yay!)...

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SOOC Saturday: Crashed

2009-08-23T07:50:00.000-04:00

Friday night we had a huge thunderstorm with lots of thunder, lightning, and pounding rain. Bearhug and Cuddlebug were upstairs playing their Pokemon games, but came downstairs because all the commotion outside scared them. Bitty was already asleep on the couch. Cuddlebug asked me for a blanket and the next thing I knew, he was out. And it wasn't long after that, I noticed Bearhug had gotten quiet and sure enough he was asleep too, with his game still going...

For more SOOC Saturday (straight-out-of-camera, no editing!), visit Slurping Life.

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Friday Photo Flashback

2009-08-21T00:21:00.007-04:00

I found a great new blog not too long ago - More Than Words, and noticed on a recent visit that she hosts Friday Photo Flashback every Friday. How fun! So I found an old picture to play along this week :).

"Why Twin Toddlers and External Water Dispensers Don't Mix"

Not sure how well you can tell in the picture, but they were both completely dripping wet and their clothes were SOAKED!! (click to enlarge and see the water all in their hair).

We were visiting relatives who had an external water dispenser in their fridge and it didn't take long for the boys to find it and figure out how it worked. They were 18 months old and just barely tall enough to reach... they started pushing the little lever over and over (and over), squirting themselves with freezing cold water and laughing hysterically about it. They made quite the mess, but they had a great time :).

Oh, and that's Cuddlebug looking up at me while Bearhug is still busy with the water.

For more Friday Photo Flashback, visit More Than Words.

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Happy Anniversary Mom & Dad!

2009-08-19T23:22:00.004-04:00

Today is my parents' wedding anniversary, so I thought I'd share a video that I made for them last year (but didn't post at the time so it's new here). The music is "Sweet Caroline" by Neil Diamond, their "song" going back to when they were dating :).

To Mom & Dad - I love ya'll and wish you many, many more happy anniversaries!

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Bitty and me, and some updates

2009-08-17T07:14:00.002-04:00

Bitty loves to be carried (in fact, he insists on it by jumping in front of me with his arms up so I can't walk). He's getting so big, but I can still carry him for a little while at least so I prompt him to ask, "up pweez" and then I carry him until my back needs a break.

He reminds me of Cuddlebug when he was younger (hence the nickname...), he was a cuddly little koala bear too. As you can see I'm not so good at trying to take pictures in the mirror, couldn't quite get the right angle but this was the best one. Well, this was the only one where you can actually see us...

Some quick updates:

Bitty did pretty good at church yesterday. He didn't participate much this time, but he did go to his class after some protest. He stayed on my lap with his sippy most of the time. He was pretty tired this weekend, all of the boys were. They are still adjusting to being back in school.

Cuddlebug was asked to give a talk in primary yesterday, and Bearhug was asked to read the scripture. They both did great, despite a fair amount of grumbling beforehand. They were so excited about it last week (because the kids get their assignments in the form of "mail" and they were excited to get mail) but not so thrilled yesterday.

All in all it was a good day.

There was some crankiness this morning about going back to school from Bearhug and Bitty... but dh said they were both fine by the time they got to school.

Tomorrow, Cuddlebug and Bearhug have their first Cub Scout meeting. Bearhug is excited, and Cuddlebug is worried it will cut into his Pokemon time (sigh). He would stay home and play Pokemon 24/7 if we let him. We told him we won't force him to keep going if he doesn't like it but he does have to give it at least a few weeks (they only meet once a week) before he decides he doesn't like it. We also reminded him that it won't affect his Pokemon time because he and Bearhug are already limited to 1 hour of game time per day on school days - assuming they have that much time after any homework is done. Fridays are the exception, they get "DS night" and can stay up late playing games.

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HE DID IT!!!!! (Autism at church, part 3)

2009-08-16T07:12:00.003-04:00

Sometimes progress comes in baby steps, sometimes it comes with as many steps backward as forward, sometimes it pauses for a long plateau.

And every now and then...

...progress comes in giant leaps! Or, maybe it would be more accurate to say a culmination of baby steps that come together all of a sudden in a way that feels like a giant leap!

But however you word it, we had just such a moment last Sunday. And it was nothing short of a miracle as far as I'm concerned.

For sharing time, we went back to sitting in the back of the room. My head was pounding and I wasn't up for the chasing and wrestling that I knew would happen if we tried to sit with his class. He did pretty good sitting with me in the back. When it came time to go to his class, I didn't think he'd go. He was already protesting, "No fih-teee" (his classroom is room #15). I shrugged and figured, let's try anyway.

I was pleasantly surprised when he grudgingly joined the other kids in room #15. He sat on my lap with his sippy cup, not really paying attention or engaged in what was going on, but that was the first time we'd made it that far in a long time so I was happy :). Little did I know what else he had in store!

When his teacher pulled out some pictures to look at, I gently nudged him, "Hey, Bitty, can you see the picture? What is that?" I fully expected his usual non-response, but he surprised me again when he actually looked up at the picture.

His teacher recognized his effort and started asking him questions. He answered. He went back to his sippy as the other kids answered questions about the picture. But when the next picture came out, and the next, he slowly got up from my lap and sat in a chair next to the other children. He was paying attention, and he continued to answer questions.

He went on like that through the rest of the lesson - he was engaged, he was calm and well-behaved. He listened and he participated. I could see that his teacher was really excited with this development too.

By the end of class, I was fighting back tears. Countless months of struggle, and then BAM, just like that! Something clicked and he was no longer isolated in the hallways or even just in the room. Not once did he go for the light switch, or the door; not once did he have a fit. He was part of the class, he learned something, and he was happy! I just can't even describe how exciting this was and still is!

Of course I had to call my parents right away after church to share the exciting news, but I had lost it and was bawling by the time my mom picked up so it took a minute to actually get the words out.

"HE DID IT!!!!!"

Once she realized what I was saying, I think she was crying too. Bitty was totally nonchalant about the whole thing, but it was a huge deal to me.

It almost didn't happen. That morning, I had considered staying home with Bitty while dh took Cuddlebug and Bearhug to church (he teaches a class so he wouldn't be able to sit with Bitty if he took him). I'd had a headache that lasted through the night before and I wasn't sure I was up to a 3-hr "workout" with Bitty. But you know how you just get those feelings sometimes, and that morning it was telling me that Bitty and I needed to be at church. I'm glad I listened.

I am feeling cautiously optimistic about church today. Hopefully Bitty will have another great day like last week. I'm sure we still have some ups and downs ahead of us, but hopefully we have turned a corner...

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Autism at church part 2: Bitty wears. me. out.

2009-08-16T07:06:00.002-04:00

You may recall I posted recently about some of the struggles we've had at church over the years. Just as things started to "click" for Cuddlebug and Bearhug at church, Little Bitty started to really struggle. At the time, he was still attending the nursery, for children 18 mos to 3. More often than not, he went into meltdown mode just at the sight of his classroom door, and even if I went in along with him it made no difference. It became rare for him to actually go in and rarer still for him to go in by himself (or allow me to leave without hysterics - here's just one example from last year). The two of us spent most of our Sundays roaming the hallways at church, making "rainbows" at the water fountain, counting trees in the parking lot, and generally trying to avoid light switches and doors (the objects of intense fascination for Bitty).

Every January, the children who turned 3 the prior year "graduate" from nursery to primary (children's Sunday School). The primary kids have about an hour of "sharing time" where they meet as a group to sing songs and have a short group activity. Then they break up into classes based on age for the last hour. I was dreading it. It took years for Bearhug and Cuddlebug to finally adapt to the whole primary routine without frequent breaks, attempts to escape, or general disruptiveness. I wasn't exactly looking forward to a repeat of that experience (granted, with one instead of two this time - gotta look at the bright side!).

Bitty did about as well as could be expected, considering he really didn't understand what was going on, doesn't like singing, and quickly became obsessed with the microphone at the front of the room. He was forever trying to run up and talk into the microphone, which of course is a pretty obvious disruption. When I took him to the back of the room, he found the light switches and had a ton of fun racing back and forth from one to the other trying to flip them before I could stop him. (Fun for him, not so fun for me). When I tried to take him out of the room he noticed the doors and that would spark a session of open-clooooose-open-cloooooose... you get the idea (the doors have those little hydraulic things so they close slowly and he loves to watch). Again, not quiet especially since he squealed - loudly - with delight with each open-clooooose. When I finally got him out of the room, he'd scream at the top of his lungs, then go running up and down the halls looking for things to climb or get into.

I hoped that he might do better in the small classroom for the last hour, but by then he was very overstimulated and just couldn't do it.

I tried all kinds of things to occupy him so we could at least stay in the primary room with the other kids, but nothing could compete with the microphone, lights, and doors. We soon settled back into our routine of spending 2 hours each Sunday in the hallways or outside. I considered the day a "success" if he stayed fairly close to me (not as much chasing) and didn't have a meltdown (or only had 1 or 2). We went on like that for months.

And then a few weeks ago, I decided to try again. Just baby steps. I took him into the primary room, but instead of sitting with his class, we stayed in the back of the room by ourselves. When I offered him his puzzles, he accepted and we were able to stay there the whole time without incident. I was *amazed,* and humbled when I told my mom about it and she said she had decided that week to stop praying for him to go to class and pray that he would just be able to go into the room. Her prayer had been answered.

Encouraged, I tried again the next week. After a few more weeks I worked up the nerve to try taking him up to the front of the room to sit with his class. That resulted in a set-back as he decided his little chair made a great toy. He was continually moving his chair, then sitting in it and making himself fall over on purpose, then getting up and knocking the chair over again... he returned to his microphone obsession and when his plans were thwarted he protested by stripping. Not all the way, thankfully, just his shirt, shoes, and socks. There was a brief moment he started to tug at his pants / underwear but I was actually able to stop him before he went down that road. (yay!)

We managed to go to his classroom once during that time, but it was such a disaster that I realized I'd pushed too hard and I backed off.

Which brings me to last Sunday, when I decided to give it another try...

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