Working up the nerve

We decided to bring the whole family to the Burnsville Fire Muster this afternoon.  It's a little local carnival and firetruck celebration.  It's right down the street from us, so we end up going almost every year.

We knew we wouldn't be staying long with the boys, so I debated.

"Should I bring my camera?"

Mark rolled his eyes a bit and said "You know if you don't, you'll wish you had."

And of course he was right, so I flung the strap around my neck and off we went.

AJ stared longingly and kept trying to break free of my hold to run over to see the Merry Go Round, so I asked him "do you want to ride the Merry Go Round, AJ?"  And he replied "Yes!" with enthusiasm.  So we got some ride tickets and he chose a horse right next to Aliza.  For a few seconds.  Then he switched to a bench.

 

For some reason once he was on there, it didn't seem to thrill him.  You know what was great, though?  Watching Zack take a turn.

 

 

 

Zack was at his limit of fun after that, so he and Mark went home.  AJ, Aliza and I stayed awhile and Aliza and I got brave and thought we'd see if AJ could handle this big pirate climbing contraption.  It was all ramps to run on, rope ladders, slides, and places to jump.  All things AJ can do.  So we handed over ride tickets and gave it a shot.

 

 



 

But after he got to the top of this rope ladder, AJ got kind of stuck.  He couldn't bring himself to go down the slide.  He wanted to badly, and he watched a dozen other kids slide down, but every time he got near it and Aliza tried to help him, he backed out.

 

She tried forcing him to go down the slide, because we both knew he'd love it, if he'd just DO it.  But he's wily and slippery when he doesn't want to be caught, and he kept wiggling away from her.  So I went up there and tried to get him to come back down the rope ladder to me.  He couldn't do that either.

 

So my resume of special skills now includes climbing a rope ladder with a giant camera dangling around my neck and holding my wallet in one hand.  It was a little more adventure than I'd planned on.  But I managed to drag him back down the rope ladder.

 

The rest of the time we were there he kept looking back, saying "slide?"  I knew he wanted to do it, but it's not like we were at the neighborhood park - he can't just bounce around up there for half the afternoon while he works up the nerve to do it.  When you pay to go on these things, they kind of want to you hustle through, and make room for the next paying customers.

I felt bad for him, but he later he picked a rubber ducky from a big pool and won just that - a rubber ducky.  We walked home and he held up his prize and announced repeatedly, "Look, I got a duck!"

 

So I think he was happy.

Last Hurrah

I'm not going to sugarcoat it.  I am pretty thrilled that school has started.

I'm sorry.  I'm not Kelle Hampton.  I have been Enjoying the Small Things (her blog name - don't pretend don't know who she is.  She's the hugest mommyblogger ever.  I know at least 1/3 of the people I know read her.  I admit, stalking Enjoying the Small Things is a vice of mine.  What can I say, she makes Florida and Down Syndrome look like the two most beautiful things on God's green earth.) for a while, but I'm ready to enjoy some me-time while my small things are enjoying their studies and their friends.

I want to be a Suck-the-Marrow (a Kelle-phrase) kind of mom like her, and I've tried, but I think we ran out of marrow around the second week of August, and since then we've been faking it.  It's not just me.  The kids are tired of pretending they are loving their free time too.

We did have sort of a last hurrah of summer last week one day, at the local duck pond.

It's kind of fun, watching the ducks divebomb each other for the stale bread.  You'd think they were starving.  I know for a fact people come out here every day, several times a day, to throw bread at the ducks.  As soon as they hear people coming down the path, they all start quacking and paddling over to the walkway.

But these boys have had way too much free time, because this is their favorite way to drive me crazy lately.  It wouldn't be so bad if they understood that it's all fun and games until someone is bleeding.  Just call me the ref.

Welcome to 3rd and 1st grade!

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.

Zack Loves Aliza/Government Shutdown Update

Zack has decided Aliza is the greatest thing since Cookie Crisp.  He was in visiting with her early this morning, before she got up.  I went in to check on them and she was laying down in bed, he was sitting on the bed next to her.

"He's okay, he's not bugging me."  She told me.

"What are you guys doing?"  I asked.

"We're talking.  Zack's saying something about being a king, I think."  She said.

This is my boy who would just as soon watch the Wiggles as do anything social with anyone, including his twin brother.  So this made me smile.

Then we went out to a park this morning before it got too hot, and it became clearer what Zack was really interested in.  I don't know if it's the fabric or the print, but for some reason, he loves the shirt Aliza has on today.

We thought he was going to push her on the swing, but he really just wanted to touch the back of her shirt.

I tried to get her to pose by this tree for a pic.  Zack stuck to her like glue.

AJ was always a day late and a dollar short.  Where'd they go?

Is it the cotton shirt, or the butterflies that is attracting him?

Eventually she got annoyed and sought refuge at the top of the tunnels.

The state government is going to have to shut down, it looks like, but our therapy will not be affected.  Medical assistance is considered essential.  Thank goodness!  It's not good news for the 1000's of government employees who will be out of work during this time though.  I wrote our state representatives last week, and got a response back from one of them yesterday.

The email (almost certainly a form letter that went out to 100's of us) completely blamed the governor for their inability to come to an agreement on the budget.  I'm going to write her back.  I don't know who is at fault and I don't care, but it sounds like she is being the one who is inflexible and instead of playing the blame game, maybe she should be trying harder to come together on an agreement.  I won't forget this, come reelection time.

Know what today is?

You might have noticed this

on the sidebar for the past few weeks.  Today is "Stop the R Word Day" and this picture is supporting and promoting the campaign to get people to pledge to stop using the R word.  While I'm not on the soapbox too often, I feel compelled to acknowledge this day.

There was recently a discussion in the Fragile X email group about a mother of a little boy with Fragile X who had attended a neighborhood party where someone had used the R word, and she was upset and had to leave the room for a moment.  She wasn't sure what to do about it.  What to say.  I probably would have done the same thing.

I also recently saw an offensive You Tube video posted on Facebook, by someone I used to work with.  No one I know closely.  I don't think this person even knows about my kids, or reads this blog.  (I imagine she/he will tell me if I'm wrong, though.)

I'm not going to post a link to it because I don't want to give this video any airtime at all.  I don't want a single person to get to it from my blog.  There will be no direct connection.  But you can find it on You Tube if you want to.  It's called "Retard Celebrates House Fire" and it's a guy on a stretcher, obviously mentally disabled, acting crazy, like he's happy about the burning house behind him.

If you MUST see what I'm talking about, go to You Tube and search for it, but don't watch it.  Don't give it one more viewing.

I was incredibly uncomforable when I saw it.

I'm also uncomfortable with my status as "that girl,"now.  The one you have to be careful what you say in front of.

I want to be the one you can be free and easy with.  I want us all to laugh about the fact that I just called myself "free and easy."  I want to be the one you can tell the dirty, off-color, political, offensive joke to.

I also don't want to hear the R word.  But I don't want to be that girl who ends the party and the good times because someone said it, either.  I don't like the word.  It's a damned awful way to describe someone, no matter what the circumstance.  (I cuss to denote the seriousness.)

And every possible alternative to the R word is a terrible, cruel, devastating way to describe a human being.  None of them should be used.  In fact, you are all forbidden to use them in my or my children's presence.  You are just going to have to be creative and clever and come up with some other adjectives.

I think we've gone past the stage where the boys are small enough to get away with acting strangely.  They are big 6-year-old kids now, and other kids are going to expect them to behave and respond the same way every other kid does.  I got to talk to their kindergarten class this year about how they are somewhat different and yet how they are the same as other kids, and to suggest ways to interact with them - i.e., high fives and just saying "hi."

Random kids at the park won't have had the benefit of my talk, though.

So, what I need to do is work on my comeback.  What am I going to say if someone uses the R word in my presence?  Because unfortunately, most people don't live by my rules - it's going to happen.  It's one thing if someone just happens to let it out in general conversation around me -- that's less personal, but no less painful.  I need a comeback for that situation.

I also need a good comeback for kids, though, who are using it peronally against us.  I don't want to fly off the handle, but it's going to make me hot if some kid says something derogatory about my sons.

What should I say if sometime this summer while we are at the park, some little (or not so little) kid calls one of my boys retarded?  Without making the gap between my boys and other children even wider?  Because nothing says "I'm different from you" more than a mom hovering within a few feet her kids while they climb, swing, and slide.

Yeah, I don't usually sit on the bench with the other moms.  I follow my boys around like a stalker.  I want them to have the space to play and be themselves, but at the same time, I need to be right there if their interactions with other kids don't go smoothly.  Sometimes other little kids make them anxious.

And what should I tell Aliza to say?  I want her to have the right response, too.  It's so much harder for her.  She has to worry about her brothers and then worry about her own place in children's society too.

I'm going to be thinking about it, and I'm open to your suggestions.

A Park, a Bridge, a Wedding, and a Cemetery

An afternoon chasing the kids with the camera.

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