It's Like Christmas in July

The boys have been loving Christmas videos lately.  I'm not sure what the deal is.  Between The Wiggles "Santa's Rockin" and The Wonder Pets "Save The Nutcracker" and "Save the Reindeer," if I wasn't wringing the sweat out of my hair, I might wonder if I should start getting the Christmas decorations out.

The past couple of weeks though, they've allowed a new show into the list of favorites - the Little Einsteins.  It has the same aspects that Dora, Diego, and the Wonder Pets have that the boys love so much - each show has the same outline and repetitive songs. 

When the Little Einsteins decide what they are going to do, one of them says "We've got ............ a mission!"  And AJ will throw his arm up in the air and shout "a mission!"

We are just thrilled to have another show to put in the mix.  So we are desperately DVRing every single episode on TV and hitting all the Goodwills and thrift stores, searching for DVDs.

Wouldn't you know, the one DVD we have right now is the Little Einsteins "Christmas Wish."  And we watch it every day.

Good Times in Our Backyard - With a Trampoline!

(This post is super old - it's from spring of 2010 - I just added a couple of labels and resized a couple of the photos, and Blogger seems to think it's brand new and wants to put it on top.  Sorry.)

Check it out!



AJ could have spent all night out there. Even after his nighttime medication, he whined and cried to go back out and jump. Eventually he had to be carried upstairs and put to bed. Zack was up and wide awake at 5 this morning, not that that's anything unusual. I followed him downstairs and he went straight to the back door, turned on the patio light, and stared out at the trampoline.





The whole backyard just looks more fun through the trampoline safety net.





I foresee a lot of time spent outside jumping today. Rain or shine.

Bright Lights Big City

We drove to downtown Minneapolis today for our tour of the theatre where we'll see The Wiggles next week.  We're only about 20 miles away and on a clear day you can see the skyline from right down the road, but we don't go downtown very often.

"Wow!  Is this New York City?!"  Aliza exclaimed.

Apparently I need to venture out of the 'burbs with my kids more.

The boys did fine on the tour.  I'm sure it's going to be quite a different scenario next week, when the place is full of people.  We'll just prepare as well as we can (in other words, next Tuesday would be a very bad day to forget the meds.).

And summer rolls on

Did I ever mention that we are attempting to get a local Fragile X support group going?

I've been working on a website and a logo.

The Southern Minnesota Fragile X Support Group (although I already want to change that name.  It's too long and doesn't abbreviate well.  Plus, why are we blowing off northern Minnesota?) more or less started gathering steam last spring.  We have monthly coffee meetings and a few local Fragile X families have popped up and shown interest in working with a local group.

(I am thinking about Fragile X Association of Minnesota or Minnesota Fragile X Association.  That's a format a lot of state groups use.  I don't want to actually use the word "syndrome" because we want to include the other associated disorders, FXTAS and FXPOI.)

And next month we'll have a picnic where we can meet and get to know each other.  A few years ago another attempt was made to get a local group going, but it sputtered out after awhile, as I think the leader had trouble getting people to get involved.

I guess I'm going to have to be pushy.  **smile**

Anyway, if you happen to live locally and you don't know about the Southern Minnesota Fragile X Support Group (See what I'm saying?  It takes like a full minute to type all that out.), please email me or comment here and I'll hook you up. Ditto if you know someone who lives in Minnesota and is affected by Fragile X Syndrome, or any of the associated disorders.

In other news, today is the boys' last day of summer school.  Boo.  So much for my little one hour blocks of free time.  Aliza and I went out for breakfast this morning after they left.  A quick breakfast, because we also had to get groceries.  In an hour.

Tomorrow we go on a tour of the Historic State Theatre, where we'll be going to see The Wiggles.  They were so nice when I explained that my boys just need to walk around a little and calmly see the place, before they deal with the anxiety of the live show.  Which is coming up next week already!

Fun at the Park

Nice rabbit ears.  I don't think we've got our annual Christmas photo quite yet.

Wordless Wednesday, One Day Late

AJ, impersonating a lounge singer.

You see why I can't hang anything behind the piano, or put anything on top of it.

I don't GET Twitter.

Twitter is for people you like but don't know; Facebook is for people you know but don't like.

~I can't remember where I heard this, or I'd credit it appropriately.  But I like it!

(P.S. - I like my Facebook friends.  Most of them anyway.)

I would like to understand how to use Twitter better.  I have a Twitter account, new people are "following" me there almost every day.  I feel a bit of a responsibility to figure it out.  Where can I sign up for Twitter 101?

I hardly ever do anything on Twitter except for post blog posts.  I'm not sure what else to do.  It's all the inane posts from people I follow, I think, that are confusing me.

And then there are all the symbols.  OH, THE SYMBOLS!  Every "tweet" has a bunch of pound signs and slashes and random numbers and very cryptic and abbreviated web addresses and wordsallstrungtogetherwithnospaces.   Very hard to read.  Or am I just too literate for it?  If I were a member of the texting generation (i.e., under 30), would it all make more sense?  When did communicating start to require knowledge of a secret code?  It's making me crazy.

I understand the suggestions of who to follow.  But the Trends -- what exactly is that?  Is that what people on Twitter are talking about right now?  Should I care about that?  Or is it just a time waster, like 80% of the internet?

 I hear about things on Twitter all the time that sound interesting, but don't often see anything interesting, when I'm on there.  Am I not following the right people?  Or am I just following too many people?  How do I sort through to find what really might be interesting to me?

And then there's the Anthony Weiners of the world, getting into trouble for posting things to all their Twitter followers when they meant to post them to just one individual.  I wasn't born yesterday (or the day before).  I would never post anything "questionable" anyway, individually or to all.  But how does one "tweet" something to just one person?

I think Facebook is easier.

Can anyone offer me a lesson or two on Twitter?

Learning to Talk

AJ has been learning verbs.  So all day long, he'll point at the TV, or in books, or at real people and say

"What's he doing?"
"What's she doing?"

And I'll answer with

"He's reading."
or
"She's talking."

Or whatever is appropriate.  AJ is relentless.  We do this from the moment we get up in the morning ("What's she doing?"  "She's yawning."), when we are getting dressed ("What's he doing?"  "He's putting on his pants."), when we are outside ("What's he doing?"  "He's swinging."), when we get ready for bed ("What's she doing?"  "She's brushing her teeth.").  All day long.

The other day I was upset.  I don't want to get into what it was all about.  I lost it a little in front of the boys.  It was not a good day.

AJ came up to me, sitting on the couch, and said "What's she doing?"  I didn't answer him.  So he answered himself.

"She's crying." And he touched my cheek.

The little heartbreaker.

Getting up on my soapbox. That sound you heard is my knees cracking.

Tomorrow (Friday, July 22) is Fragile X Awareness Day.

Do you know 130 women?  (Okay, you don't have to know them all really well....but I bet if you counted everyone you've met in the past, say, 2 years, plus everyone you used to know in college, and in past jobs, and in high school, and through other friends.....you could probably come up with 130 women, right?)

Which one do you think is a carrier of the Fragile X gene?

That's the latest estimate of how many women in the general population are carriers.

I know.  To a young woman who has yet to have children, it's not that impressive a number.  It wouldn't have meant that much to me, before I had kids and knew I was a carrier.  There are much bigger, much more common things to worry about when you are considering having babies, right?

Like Down Syndrome (1 in 365, for a 35 year old woman)
Or Cystic Fibrosis (1 in 3,000 Caucasian babies per year)
Or Duchenne muscular dystrophy (1 in 3,500 boys)
Or neural tube defects (including spina bifida) (1 in 1,000)

The incidence of Fragile X Syndrome is 1 in 3,600 to 4,000 boys and 1 in 4,000 to 6,000 girls.  Those numbers might not be impressive compared to the numbers for some of those listed above - unless you happen to be that 1 among 130 women.  Her chances are 1 in 2.  (Plus, the carrier gene can cause infertility.)

Now that's some crappy odds.  But it's better to know, than not to know.  Knowledge is power.  (Somebody famous and smart once said that.)

Autism rates have exploded.  That makes it so much more important to test for Fragile X, because they are so similar, and it's thought that Fragile X is often misdiagnosed as autism.

If you have a child with autism, please take a minute to review the symptoms of Fragile X and consider testing your child for it.  Knowledge is power.  If you know exactly what causes your child's autism, you can work with that!

And if you happen to already know that Fragile X is in your family tree somewhere and you aren't sure whether you could be a carrier, take the time to find out.  Don't wait until it just shows up in your kids, your grandkids, or your great grandkids, because as my friend at Basically FX said here.... it'll rip your heart out.

Please also take a couple seconds to "attend" the National Fragile X Awareness Day event on Facebook. The event is located HERE.  It's easy and costs nothing and you don't have to get dressed up and leave the comfort of your laptop to attend.

Here's where I got this information, in case you want to read up on it some more.
http://pregnancy.about.com/cs/downsyndrome/l/bldownssyn.htm
http://www.wrongdiagnosis.com/c/cf/basics.htm
http://kidshealth.org/parent/medical/bones/muscular_dystrophy.html#
http://www.sharecare.com/question/rate-incidence-neural-tube-defects
http://www.fragilex.org/pdf/PrevalenceWhitePaperAdaptedforFQ.pdf

It's Fun to Stay at the YMCA

Awhile back I wrote about this great idea I had to bring the kids to the daycare at the YMCA and slowly but surely get them used to it, so that one day I can be one of those awesome and lucky moms who can just abandon their children to the daycare and go have a nice, sweaty workout session.  Last week I started the acclimation process.  Here's how it went.


DAY 1
Had to wait to get into the childcare area while no less than 7 moms were in line picking up their kids. I had no idea I was showing up at rush hour.  We stood in a corner while I wrestled with Zack and Aliza kept AJ from tearing in there on his own.

Got in, explained about the boys and our purpose here, and went to the play/climb/shoot baskets/tumble/slide room (also known as the kid gym).  We were alone for quite a few minutes then a TON of kids came in.  AJ loved it.  Little boys chased each other and fell hard on the tumbling mats; AJ followed them running, and then fell hard on the mats right beside them.  He was all sweaty and red faced and laughing, and it was adorable.

Zack's anxiety was at defcon 5, however.  It was like he was trapped in a house on fire.  I held him as well as anyone could hold a sweaty, writhing, wailing octopus.  I was going to take him out to the hallway just to calm down and leave AJ and Aliza in there, but AJ saw us leaving and he followed.  So we left.

That was Day 1.  Not good, but not exactly unexpected.

DAY 2
So much better!  There were a bunch of littler kids in the kid gym when we got there, and AJ ran around with them pretty well.  Zack bounced back and forth, wringing his hands, in a corner for the first few minutes but then he got comfortable and started climbing and sliding and generally running around.  He really only pinched one kid, who held his arm closely and looked wide-eyed at Zack.  I went over and asked him if he was okay, and he said "yeah, I just have a mosquito bite right here."  Very sweet little boy.

But the best part was that I talked to one of the staff there who said they have several kids with autism who come in, and a couple of them, they have a specific staff person to watch that kid and follow him around and make sure he does okay.  I'm going to have to call and find out how I can get in on that deal.  One or two more times with someone helping us, and I could be one of those moms who gets to drop kids off at the childcare and go upstairs and work out!

It's so humid that my camera lens fogged up.  And yes, Zack is wearing one blue Croc and one black one.

The boys have been working in therapy on playing together in the sandbox - and this weekend they did it all by themselves!

Rockin' the Baby!

It's a chance to show off some baby pictures - you know I can't resist that!  Brought to you by a lovely and thoughful blog called Things I Can't Say, a cute baby meme (a blog gathering with a theme)!  Go on over and see lots of very cute baby pics!  But first see mine right here -

Aliza at about 6 months, bright eyed and bushy tailed.

Check out those curls!

The attitude kicked in quite early with this one.  "Get that camera out of my face and get my chocolate milk!"

AJ on the left, Zack on the right, at about 2 months.  Zack was the petite one for the first 2 years or so.

Zack on the left - AJ on the right.  On their first birthday -- and showing off their two teeth, each.

About 19 months old, loving the heck out of each other.

One of the first times they stood up!

Saturday Morning Cartoon Nostalgia

"There's cartoons are on channel 5?"  Aliza says incredulously, this morning.

"Yep.  You know when I was a kid, there was no Disney Channel, no Nick Jr., no Cartoon Network.  We could only watch cartoons on the regular channels on Saturday mornings.  And sometimes Sunday mornings.  We'd all get up early to watch cartoons on Saturday mornings because that's the only time they were on."  I told her. 

She shook her head slowly.

"That's sad."

Feel the Love!

I can't miss Feel Good Friday - so this week I'm going to post the cutest little home video ever taken of any twins anywhere in the history of home videos with twins.  Nope, I'm not biased at all.  You'll agree when you see it.  I only wish it were longer.

Get ready to AAAAWWWWWW

Don't feel too bad for Aliza here -- she's got a cupcake, after all.

Just Call Him Bullseye

How to have a nice little garden with virtually no effort whatsoever, and a lesson in perseverance

There's this little area in our front yard that some previous owner apparently used to plant things in.  A couple of springs ago, Aliza and I pulled all the weeds out of it and threw a little package of random wildflower seeds in there.  This is our garden.

We don't do a darn thing to maintain it. We don't pull weeds. We don't water it or fertilize. Easiest garden ever.

Another thing we are growing without any effort at all -- this tree.

During one of our many snowstorms last winter, the snow was so heavy that it felled this tree and we had to cut what was left of it down.  I thought I had pictures of it, but I can't seem to find them.  All I can find is this.

Anyway, it used to look more or less like this:

So I'm trying to look at this little stump as an example of perseverance.  Doggedness.  Pluck.

Yesterday was a hard day.  The cat pooped on the floor and AJ walked through it, and all around the basement carpet. There was also, later in the day, a (full) box of Chex cereal knocked to the floor and a can of diet Dr. Pepper spilled.  Not a full one.  But still.

So I was ready to throw in the towel yesterday afternoon.  And then I went outside and saw this tree.  This little stump that is trying so, so hard to be a tree again.  I should try at least as hard as that little stump to keep going.

Of course, the stump never had to steam clean poop out of the basement carpet.

Want to play catch?

We went swimming at the YMCA yesterday with the kids. We do that almost every Sunday, and the kids know it, so most of the afternoon AJ had been asking "swimming?"

Within minutes of our arrival, throwing ourselves joyfully into the water, there was a little boy hovering around us, tossing around a little floating water ball. I could tell he was wondering whether he could get any of our kids to play with him. He was really checking them out.

When he was within a foot of Zack he said to him "hey, want to play catch?"

Zack was in water up to mid-chest, splashing with his hands and watching them intently. He stopped, glanced up for a second at the kid and went right back to splashing.  (Sigh.... I know.  How autistic of him.)

I was right there too, of course, within reach of my little pincher and biter and I told the kid "he doesn't talk much and I don't know if he knows how to play catch, but you know who you could ask? That girl over there." I pointed at Aliza.

Aliza said no, but the kid was persistent. He continued to circle us and follow us around, and eventually he just chucked the ball over to AJ. I guess he figured, he'd give it a shot. You had to appreciate his spunk.

AJ was tickled, but has no idea how to play catch. Well, that's not exactly true.  They have both worked on that in therapy and at school. (And I'm compelled here to mention how I am constantly in awe of how hard it is for them to play.)  But playing catch in a swimming pool is a whole different thing.

So I helped him. I held the ball in AJ's hand, and we held our hands up and counted (well, I held his hand and counted) "1, 2, 3!" And threw the ball back to the kid.  AJ laughed and laughed.

And the kid threw it back and asked "doesn't he know how to throw a ball?  I'm seven and a half."  Obviously HE knew how to throw a ball, at that great advanced age.

"Not really, no." I said.  I didn't want to explain too much.  Partly because the more I explain, the more it alienates and separates the boys from other kids.  And partly because I just didn't feel like it.

And AJ played catch (well, AJ and I played catch) with the kid for quite a few minutes.  The kid didn't think it was weird that I totally had to make AJ do it, or if he did, he didn't say.  And he didn't swim away from us.  He kept throwing that ball.   Sometimes to AJ or Zack, sometimes to Aliza, and often to me or Mark, but he was quite determined that one way or another, he was going to get a game of catch out of the deal.

It was fun.

Once or twice the ball landed outside the pool.  The kid's mom was watching from the sidelines and she threw it back in one time, right to AJ, and he took it and smiled and waved at her.  And I smiled too.  Because just for that second he looked and acted so ...  normal.

My, How Times Have Changed

Forts have gotten really high tech since I was a kid.

None of my forts when I was growing up ever had a lock, much less a keypad entry.  I wonder what the code is.

Feel Good Friday - created by The Girl Next Door Grows up

currently maintained by Lia Sophia Tomgirl

Go on, do it - everyone should feel good on Friday!

I wish everybody in the whole world was just like her.

We've been pretty tired from the busy weekend, so we have been hanging out at home the past couple of days.  Aliza made a fort in the living room with four dining room chairs and a pile of blankets.  She put toys and books and the boys' fun folders and puzzles inside.  It was great fun for them all.

... but they were still drawn to the TV like moths to a flame.

Aliza is such a wonderful playmate for Zack and AJ.  She knows what they like and will respond to, but then she introduces aspects of playing that might be new to them, too.  She loves drawing them out of their video-watching shells and getting them to interact with her.

I wish the whole world worked as hard as she does to get them to belong.

I wish every child growing up with a disability had a sibling just like her.  Someone to be their sidekick, and know them intimately.  Someone who gets them and can help introduce them to the rest of the world, and maybe even more importantly, introduce the rest of the world to them.  She is great for bridging that gap between the expectations kids have of how other kids will behave, and how MY kids behave.

You might say, they need a Sancho Panza.  Somebody to be their ever-faithful companions, and to help keep them out of trouble.  (I just recently decided I need to read Don Quixote again.  I read it in college in Spanish - i.e., I didn't really get it.)

Who, us?  We weren't doing anything.