Neither Rain, Nor Hail, Nor Temps in the 60s ... Or Something Like That

It's been raining and cool lately.

 

Don't for one second think that will keep us out of the pool, though.

 

Whoa, that is COLD!

Burrrrrr!

 

Nobody needs this pool therapy more than Zack.  So no matter how cold it is, I encourage him to get in because when he gets out, he seems so calm and relaxed.  The other kids help me cheerlead him - we all clap and yell "Go Zack Go!  Go Zack Go!" and he loves it when we do that.  He prompts us to cheer for him some more, when we stop.

I collected all these ball pit balls over the past year or so, intending to make a ball pit in the basement - and I'm still going to - but for now, the balls are super fun in the pool.  They make it feel like a real party pool!

The Swimming Summer

We are keeping these boys good and busy this summer, which most of the Fragile X and autism parents know is an important and necessary thing!  People who are go-go-go-go-go kind of people are not much into idle time.  Idle time is the devil's.... well, it's bad.

 

On Mondays and Tuesdays they go to a center for speech and occupational therapy.  On Wednesdays they go to another place for potty training therapy, which is basically just more OT.  On Thursdays they have horseback riding, AKA hippotherapy.  And through the month of July on Tuesdays, Wednesdays and Thursdays, they have summer school.

 

The time that is left over, we spend in the pool.

 

Yep, we got a pool!  A 42-inch above ground pool.  This year the little wading pool just wasn't going to cut it, so after a fundraising garage sale, we bought this one.  It's been a major hit with our kids and the whole neighborhood.

 

The summer sensory issues Zack deals with every year are greatly minimized this year, and I have to think it's mostly due to the amount of time he spends in the pool.

 

There's still some biting and pinching.  He still gets overwhelmed and overstimulated.  But his legs aren't the bruised, reddened mess they have been for the past couple of summers.

 

The kids are in and out of there all day long.  The most number of times they've been in and out in one day?  Six.  And I'm learning about chemical balances and pool maintenance and putting a swimming diaper on them because I don't trust them.  They are mostly pull-up trained, (meaning, they are trained to only go in a pull-up, as opposed to only going on the toilet.... I know, backwards.  We're working on it.) but still, when you get in the pool and everyone's splashing and giggling and you're all distracted - things happen.

It's been wonderful for Zack though.  I can count the number of times I've seen him biting his legs on one hand.

 



 He likes leaning over the edge like this, balancing himself half in-half out of the pool. 

 

And I have a bajillion fantastic pool pictures.

 

 

I thought that having to go off the Arbaclofen would be devastating for Zack, and it has been hard.  Suddenly we have to watch the same few minutes of the same video over and over and over, like we used to.  There is one video - "Here Comes a Chicken" by The Wiggles - that we avoid entirely, because he gets so worked up when he sees it.  He works himself up into such a tizzy that if you try and turn off the video or play something else, you are in for at least a half hour of screaming and pinching and biting.

 

He started a new anxiety med - Lexapro - and it's been somewhat better.  I'm giving it another week or so before I decide, but I think it's been minimally helpful. 

 

Pinching - getting a little too excited.....

 

And biting his hand.

 

 

 

"Phelps and Lochti" (I was going to go with "Spitz and Louganis" but that seemed out of touch with current times...) here are keeping us pool cool this summer.

Pool Time with Ryan Gosling - Our (Imaginary) Manny

Summer is almost here.  The humidity creeped in yesterday and I almost turned on the AC.

Bring on the parks.  Prepare the monkey bars, the rock walls, the swings and the slides.  We've saved up our energy all winter and we're ready to hit it hard!  (Side note - has anyone else noticed that although parks rarely have teeter totters anymore, those street signs indicating a park is nearby still show a tetter totter?  Weird.)

We need to take this craziness outside!

That waterslide was a lot faster than I thought it would be!  I don't think I was ready for that!

It IS a bit of an extreme sensory experience.

But I LOVE it!

Ryan Gosling is checking out the pool to make sure it's all ready.  You know - the imaginary pool in our backyard.  (Hey, if I can have Ryan as my imaginary manny, I can have an imaginary swimming pool in my backyard.  There's an imaginary waterslide off to the left here, that you can't see in the picture.)

Check out the other entries at Adventures in Extreme Parenthood!

Our Ongoing Travels

We're baaaaaaaaaaaack ...........

in Chicago.  For another check up for the drug trial.

This time Aliza came along.







Racing







A Hilton miracle has occurred.  Both boys were asleep, in a hotel room bed, before 8 PM.  They are becoming seasoned little travelers!

I spent some of the drive thinking about what I'd tell them, when they ask whether we are seeing changes in the boys' behavior or anything yet.  I will have to say no, not really.  A few little things, but nothing really amazing.

If anything they are still showing more signs of stress and anxiety than they were 6 months or a year ago.  AJ bit me a few times on the arm this week.  I haven't had bruises from bites from these boys since they were around 4 years old.  I dressed them alike today, and by noon AJ had to change shirts because he'd chewed and sucked on the sleeve, soaking it right up to his shoulder.

They know, by now, what happens on these trips.  Lots of fun will be had, but at some point we're going to have to visit the doctor and have their arms poked, and be otherwise prodded and manhandled by scary grown ups in white coats.  They know.

Still hoping and praying and crossing my fingers and toes that something really good comes of this.  That all the stress and anxiety of these trips is totally worth it in the end.  I know that whether or not it helps Zack and AJ, our participation helps get this drug approved and out on the market, where everyone can try it, and people with Fragile X everywhere can live much more fulfilling, social lives because of it.

But I'd sure love for us to be one of the ones who benefits from it.

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.

At the Waisman Center

A small miracle occurred this past weekend during our trip to Madison.  We all got along pretty well.  Nobody fought, nobody hurled, there was minimal crying, very little bleeding and only one black eye.

I love bringing the boys to the Waisman Center.  We are a special family everywhere we go, but not always special and different in a good way.  At the Waisman, we are very unique and special and honored for our differences.  And it's nice to feel honored, a little.  It's nice to feel that those differences make us great.

When we got there, we practically leapt out of the van and straight into the hotel pool.  Zack and AJ were very excited to go "wimming!"

AJ has grown gills, apparently, because he keeps dunking his head under water, on purpose.  Which really freaked me out the first few dozen times he did it.  It took several attempts but I finally got a little video of him doing it, at least for a second or two.

Both Zack and AJ were superb little workers at the Waisman. They both cooperated beautifully with the researchers and even seemed to enjoy it. One of the researchers told me she thought they both seemed so socially oriented. They both loved the attention. It helped that the tests they performed were formatted so much like the ABA therapy we have at home for 6 hours a day. The idea of "perform this action, get this reinforcer" is pretty basic for them at this point.
One of the things they had to do watch a couple of simple movies. All they had to do was sit and watch. Pretty easy, right? Except that no, it wasn't one of our Big Three (Dora, Diego, or The Wiggles), so the guys were not all that interested. They managed to get through them, though. It was just pictures and then a sentence that applied to one of the pictures - like maybe it would be a cat chasing a mouse, and a cat kissing a mouse, and the sentence would be "The cat chases the mouse" and then the hope is that the kid would look over at the picture of the cat chasing the mouse. They tracked the eye movements of the boys as they watched the movies. I thought it was fascinating. It is supposed to show their comprehension of sentences without actually asking them to indicate anything purposefully. It couldn't be less invasive. All they have to do is sit there and watch!

It was really interesting to watch.  Both little guys cooperated with every single activity.

On our way home we passed the capitol of Wisconsin, and then a few hours later passed through St. Paul and saw the Minnesota capitol.  Aliza was delighted to see two state capitols in one day.

Mark was pretty excited to get to see Camp Randall.  The boys were frustrated because they were not allowed to actually run around on the field.  I'm pretty sure at the moment we took this picture, the twin who is not pictured was trying to break through the "Emergency Only" door.  They wanted to get out on that open field badly.

The best part, though, had to have been watching the boys snuggle and settle down to sleep together.  They don't sleep in the same room, much less the same bed at home, and I loved getting to see them unwind together, watching Dora and slowly falling asleep.

Good night, Madison.