It's All in the Family

This morning I was back in New Ulm - my hometown - to talk to the Sertoma Club about Fragile X.  Aliza and I drove down the night before and got up well before dawn today.  She was a trooper.  I told her she didn't have to come, it was going to be such a short trip, but she knows about as much about Fragile X as I do and she thought she should come along in case I forgot anything.

It's a surreal experience to go back to your hometown.  I'm there occasionally because my parents still live there (at least part time) but I'm usually there on weekends, and usually only go to Target and maybe a restaurant or two.  This was a gathering of business people in the middle of the week, at the country club. 

I know I haven't lived there in around 23 years now, but I still look around every time I'm there and wonder, how come I don't see anyone I know anymore?  Who are all these people who live in my hometown now?

Okay, back to the original topic here -- the presentation.

I only had a short time to talk to them, so I very quickly went over what Fragile X is, what the symptoms are, how it affects entire family trees, and talked a bit about research and the future.  And of course I included a bunch of very cute pictures of the kids.

And it went very well, I think.  They all seemed rapt with attention and had lots of questions.

I made a family tree, with all the members from my generation and two back -- so my parents and grandparents -- to show where the Fragile X gene had passed down to my twins.  It was quite wonderfully dramatic.

First I showed this screen

Then I switched to this one -- the same as the previous one, but with red X's to indicate full mutations or carriers.

You'll notice I did not "red" one of Aliza's X's.  I know she is a carrier.

We haven't told her yet.  I knew she was going to be there.  I wasn't sure how much attention she'd pay.  But I wasn't ready to tell her.  And I most certainly am not ready to discuss it with a room full of people.

All the other carriers, I'm sad about.  But they are grown ups.  WE are grown ups.  She's got her whole wonderful life ahead of her, and I don't want her to wonder what it'll mean for her, yet.  I don't want to take away from the innocence of her childhood any sooner than I have to.

So I thought about it and decided not to "red" her X.  I decided to pretend we haven't tested her yet.  We pretended we don't know.

And wouldn't you know it?  Somebody asked me about it.  A woman in the back asked me if we were going to have her tested, and I thought two things; 1.  I thought YES!  She really gets it.  She understands the point I was trying to make here with these two slides side-by-side, one with red X's and one without.  and 2.  I thought, wow, good thing I thought about what to say in advance, in case someone asked me.  So I lied to her.  Looked her right in the eye and told her that we didn't know yet and we would cross that bridge later.

When it was over, I talked to the mayor of New Ulm quite a bit, who remembers me because he was also my 3rd grade teacher.  Lots of people came up to tell me how much they enjoyed it and to thank me for coming to talk to them.  It was really something.  I could get a big head here if I'm not careful.

Luckily there's the fact that I still wipe 6-year-old butts every day to keep me humble.

This afternoon, Aliza had a friend over to play outside for a bit.  AJ watched out the front window as they went out the front door.  "AJ, do you want to go out with the girls?"  I asked him.

"Yes," He said quite clearly.  So we put our jackets and boots on and went out.  Zack didn't want to go, but we made him.

Finally, I just have to comment on this sign.

It's in Courtland, a town right outside New Ulm that I pass through every time I go home.  This sign appears on a short stretch of road that crosses the river.  It's on both sides of the road, so you'll see it whichever way you are headed.

Is there a big problem in Courtland, population 538, with rogue snowplows trying to be out after dark?  What do you think that's all about?

The Toy that Wouldn't Go Away

I have tried to get rid of the Dora's Talking House several times.  I took it out of Aliza's room when she began using it as a stepstool to reach the top of her dresser.  I was going to sell it but the boys almost played with it.  And I had hopes they'd actually "play" with it - you know, appropriately, with Dora and her family and Boots and Mami and Papi and Abuela and the whole gang.  I even had Diego.  I had a Dora swingset, swimming pool, and van.  They did not play with it.

I put it away, and got it out again a few months later to get it ready to sell, and discovered it was missing the front door.  Come to think of it, the van's doors were missing too.  I can't sell a house or a van without doors.  I'd find one door, put it away somewhere, then find another door, and have no idea where I'd put the first one.  I couldn't manage to locate all the doors at the same time.  So Dora's Talking House got put away again.

I got it out this past week, intending to sell it in the Mothers of Multiples sale.  The van is long gone (not sold and profited from, but lost entirely), all the furniture and characters are gone also (ditto), but the house remains.  Empty, dusty, and a little dreary.  But the doorbell still rings, the radio still plays, and the table that folds out of the wall in the kitchen still says "It's time to eat.  Vamos a comer!"

I found the door.  I can't put it back on.  It hasn't just popped off, it's completely broken.  So, I guess Zack and AJ can keep their Dora house forever.

Oh, and AJ has lost 4 teeth now.  The score is 4 to 2.  This is the first thing AJ did faster than Zack.  Zack is usually quite a competitor, I'm sure he'll start knocking some teeth out soon.  Maybe that's how he'll spend his spring break this week.

Stylish and Feelin' Good on Friday

Killing two proverbial blog stones today, with one post:  Stylish Blogger and Feel Good Friday!

First off, I was recently honored with a blogging award -- the Stylish Blogger Award:

I am twice blessed because I was awarded this from two bloggers!  A wonderful Fragile X mom-blogger who writes at My Journey Through Motherhood sent it to me first, and before I could finish this post, I got a second - from Michelle at Let's Make a Difference.  Thanks to you both, and right back at ya - your blogs are quite stylish as well!  Check them both out!

There are a few steps to take, in accepting this award:
1.  Thank and link back to the person that has given you this award.
2.  Share 7 things about yourself
3.  Award 10-15 blogs you feel deserve the award
4.  Contact these bloggers and let then know about the award.

So, #1 is done. 

I feel like all I do is share things about myself here, but I'll try to come up with 7 originals:

1. I'm thinking about starting a completely anonymous blog and not telling a single soul about it, and see if I can get followers and be "found" just on the merits of the words I write.  I might try it later this spring or this summer, if I can find time to put it together.

2. I am pretty sure I think I'm funnier than anyone else thinks.

3.  I recently started using a new facial moisturizer and this morning I decided my skin is worse for it.  I have a couple of zits and a couple of itchy spots.  I'm switching back to what I was using before.  I won't name the stuff I'm quitting, but the stuff I'm going back to is Dove Energy Glow medium tone tanning lotion -- it's not even specifically for the face.  But it's been working for me.

4.  This week I had a conference with the boys' teachers.  It was just a formality really, because it happens to be parent-teacher conference time.  We did all our the talking and planning we needed to do at the IEP meeting but it was still nice to get together with them and talk about the boys.  Both boys are getting along well with the kids in their class.  Zack spontaneously hugged a kid this week.  Hugged!  Their teacher said it was so awesome to see him have contact with another kid that didn't involve biting or pinching!  I think it freaked out the other kid a little, it was a tiny little guy (and Zack is a taller than some 2nd graders), but it came out fine.

5.  I read a lot.  That's probably not news.  Another blog I'd like to start is a reading blog, but there are only so many hours in the day, and I have 3 kids, so snowballs in hell stand a better shot at making it through the day than does that idea.

6.  Tomorrow is the Used Clothing & Equipment Sale that our club, MVMOM, has been working toward for the last 6 months.  MVMOM has held these sales twice yearly since 1975 and it's has grown almost every year.  I've talked about it and posted pictures here before so this may all ring some bells for you.  Click on the link at the top of the right hand bar to find out more about it.  Check out this link to see an article about our club in the local Sun Current news!  We also hope to make the 10:00 PM news tonight on local station WCCO!  It's been an exciting year so for for MVMOM!

7.  6 is going to have to do for now.  I have to get the car packed up and head over to the gym to set up for the big sale tomorrow!

So, on to my Stylish Blogs.  I was curious as to what I should be looking for exactly, so I looked up the definition of stylish.

styl·ish

[stahy-lish]

–adjective

characterized by or conforming to style or the fashionable standard; fashionably elegant; smart or chic: She wore a very stylish gown to the inaugural ball.

 
So I am looking for blogs that not only are interesting and fun to read, but pretty!  Here's my list.  It's up to them whether they accept and continue the giving.
 
And the Stylish Blogger Award goes to....  
 
Our Life
... is a great Fragile X family blog.  I think she already got the Stylish Blogger Award from someone but I second that.  She is funny and sweet and cute and tells the Fragile X story so well.

Basically FX
... is another awesome Fragile X family blog.  The author promotes a lot of Fragile X awareness and is hilarious to boot.

Salt in Surburbia
... is a relatively new blog by a mom of twins that I know.  Her twins also have autism and her perspective is honest and unique and real.

The Girl Next Door Grows Up
... is my favorite, I think, partially because not long ago I met The Girl in person, and she's so fun and smart and witty.  Her posts are never dull.  She's on hiatus right now while she revamps her blog, but keep her bookmarked, because when she's back, she's going to be better than ever!

Twin Engines
...a twin mom I know who travels with her twins regularly.  Lots of great tips on flying with little ones and cute pictures!

Wendorff Bunch
...yet another twin mom.  This mom should be The President, because she gets more done in one day than I do in a month.  She has 4 children, one of them an infant, she attends school full time and has served on the Mothers of Multiples board for 2 years.  She could eliminate world hunger in her spare time.

Big Teeth and Clouds
... is a blog by a mom of a child with hearing loss.  I love lots of blogs by special needs parents, and I'm not sure I could tell you why this one strikes a chord with me so much.  Our children's needs are so different, and yet I relate to so much of what she writes about.

Lilium's Realm
... she does book reviews, and she's dark and goth -- you have to love her!

The Scoop on Poop
... funny and pretty -- not how you'd expect poop to look.  And you might recall from this post that I'm a little obsessed with discussions on bodily functions.

Humble Ambitions
... if there were a specific award for designing a blog to look like what your theme is, this one should win it.  She's thoughtful and interesting.  They are raising rabbits to eat.  I'm cringing a little at that, but following along to see how that goes.

Everything I Like Causes Cancer
... I'd like to award this one the "Best Blog Title" award.  The name sucked me in, and the content does not disappoint.

That's all I got for now.  I'm spreading blog love all over the world today, and I think that is a pretty good "Feel Good Friday" post if I ever had one!

Feel Good Friday comes from The Girl Next Door Grows Up, and is currently being maintained by Lia Sophia Girl.  Check that one out too, her blog is bright and shiny and fun!

Spring Breaking It

Spring break starts today.

I'd be lying if I said I was really looking forward to it.  It's just hard for all of us.  And I when I say all of us, I mean everybody except for Aliza.  And when I say hard, I mean, I can make sure they know what our plan is for each day, but that won't change the fact that it's not their regular routine.

It's hard to break the routine.  The boys and I just like each other better if we have that 2 1/2 hour break where they go to school.  We need our time apart.

It might help if it were actually spring-like here.  We got another 4 inches of snow today.  It's awesome to plan your spring break amidst a snowstorm.

They must be kept busy at all times.  Or they do things like this.

Free time is bad.  Very bad.  You know what they say about idle hands.

What are our plans for the week?  We will head to the mall at least once or twice.  We'll try to plan a playdate.  Hopefully the grandparents will come to visit.  And if the snow melts, maybe we'll get to spend some of this spring break on our trampoline or our swingset, instead of spending it much like we have all winter -- indoors.

For a Good Morning, click here!

I sang this to Aliza this morning and she said she hadn't seen this movie.  So I found this clip on You Tube, and we started out our morning right.

You Tube wouldn't let me post the version from the movie.  But this community theater version is quite good too!

The Magic Pinata

(Sorry mom and dad, I have to write about this.  It's too good not to share.)
We'd been anticipating this pinata for weeks.  My parents got it in a Mexican grocery store in Galveston.  It was huge.

Finally the weekend had arrived.  We hung it on a nail outside, over the deck.  I thought it felt a bit light for how large and bulky it was, and wondered briefly whether there maybe was just a little candy in it, and a lot of confetti or something.

The kids began taking turns whacking at it.  We went smallest to biggest.  Some just waved the stick at it excitedly, barely making contact.  Some waited for it to stop swinging, and aimed carefully for a solid strike.

Finally someone pierced the bottom.  A hole had been formed.   The smacking continued, but the hits started to echo a sad, hollow sound.  The adults all glanced at each other nervously.  Nothing came out.

AJ watched, but didn't want to take a turn at hitting it, nor was he interested in the candy.  Zack didn't even want to watch.

Someone realized we needed to take a small pinata break.  The adults needed to huddle and orchestrate some pinata magic.

 The kids went back inside.  The older ones gave each other disgusted, annoyed looks.  There was some crying.

The kids played inside while grandpa made a quick trip to the store.  He spent a moment alone outside with the pinata.

A short time later we corralled the kids back outside for Smack the Pinata, round 2.  After just a couple of good smacks that magic pinata finally gave up its goods and candy spilled out.

 It was my first pinata.  The next one will work right from the get-go and won't require any magical breaks.

We went inside and everyone recovered from the pinata fun with some worm cake (cake shaped like a worm -- not cake made out of worms), which was so fantastic that it prompted Aliza to declare "it's so good, I wish I could lick my own tongue."

A Sure Sign of Cabin Fever

It's beautiful out.  We haven't felt the warm sun on our skin (or fur) for so long.

Something about mounds of dirty snow on the lawn, however, makes me think it might be a little early for the first Kool Aid stand of the year.

Only in Minnesota (and maybe Wisconsin and parts of the Dakotas)

Could it be?

Last night the boys watched "Blues Clues" instead of Dora or Diego, before going to bed.  And earlier in the day, AJ watched "The Cat in the Hat," the Mike Myers version, while on break in therapy.

AJ has been occasionally selecting Ni Hao Kilan to watch on http://www.nickjr.com/.  And he's been known to sit through Little Bear a couple of times.

Dare I dream that we are moving on from my little Hispanic friends?  Say it isn't so!  I'll miss them!

In other (Aliza) news, yesterday I was walking Aliza into school, since I volunteer in the library on Thursday mornings, and I stopped when I realized I'd left my travel coffee mug at home on the counter.  "Dang!"  I said, fairly upset.

Aliza sighed at me, and shook her head in a very parental way.  "Well, mom ... try and stay awake."

Painted hair and beads from Family Fun Night

You Gotta Have Friends

Have you ever read a story or article and it leads you right into your own thoughts on that same subject?

This blog post at Special Needs Disability parenting BLOOM  made me think about the importance of friendships.  Both for us grown ups, and for children.

Zack and AJ are mostly in a self-contained classroom.  That is, they spend the majority of their schoolday in the autism room.  I am okay with that because they are in no way, shape or form read for the process and curriculum that comes with the regular classroom.  In the autism room they can go at their own speed and actually made more progress that way because there are special features installed to help curb their anxiety.

They do go to the regular classroom daily for a short time though.  (And it's with the regular classroom that went on the field trip to the Children's Museum.)

So right now, their best opportunity to make friends is with the other kids in the autism room.  Like AJ has already done, befriending Tyler.  And I have decided that is okay, for now.  Those kids are just their speed.  Those kids won't judge or mock or tease.  And while you are growing up, while it's important of course to have peers, it's also important to feel like you can be yourself and to be confident that you are a likeable person.

Everyone needs friends who are like them.  I mean that's how we pick our friends, even as adults, isn't it?  The people who we have the most in common with are the ones we are most likely to be BFFs with.  Well Zack and AJ are going to have more in common with the autism classroom children right now, than the kids in the typical kindergarten room.

Throughout a lifetime, friends come and friends go, because we change.  The kids they hang out with today are not the kids they'll hang out with in a couple of years, because they will all grow and change, at different rates.  That applies to typical kids too.  Loss of friendship is hard, but we all should accept it as a customary, healthy process, because it's an essential part of growing up.  Ideally, new friendships crop up to replace lost ones.  If you have less in common with someone you used to talk to every day, it is only natural that you won't talk to them as often.

Doesn't mean you don't like each other anymore.  Growing apart is a natural process of living.

I do hope that one day they can have actual friendships, actual relationships, with peers who are in the "typical" world.  It would mean the world to me for that to happen.  But it's okay too, to have friends who have special needs like them.  They need friends they can relate to.  Friends who can make them feel "normal" and "typical."

Holly's Voice

I know a large percentage of the people who read this are people who know me. People for whom their only personal connection to Fragile X is me and my family. So, I need to introduce you to someone very important.

It’s a person in the Fragile X community who moves mountains and makes people think. She changes minds and motivates and inspires. She galvanizes a room, whether it’s full of kindergarteners or 40 year olds.

She has one of those auras that makes people want to be near her. Makes people want to be like her.

I might have a little bit of a girl crush on her.

You can meet Holly and hear her tell her story right here.

Here she is again, promoting awareness, kindness, and acceptance with The Social Challenge.

See what I mean? She has a voice that just draws your attention in. It isn’t just the words, although that’s of course the most important part – the message. It’s – I don’t know, I struggle to describe it. It’s her intonation, I guess. Her eyes. Her smile. Her heart.

Holly has a certain command that is subtle, nonthreatening, and persuasive in the best way. I don’t know if she even realizes it. She makes you want to do what she says, because you want her to like you. You want to be more like her.

She is the greatest, loudest, strongest, most powerful Fragile X advocate and fundraiser I know of.

Anyway, Basically FX said it all, and said it better than I could have, right here.

For me – for Zack and AJ – click on the link Basically FX provided and nominate Holly as the CNN Hero of 2011. It won’t take long. I really want her to win. I’d love to see what she could do with the CNN platform to shout from!

That's my girl

Mark was raised Catholic.  I was raised Lutheran.  We are still working out the details, but so far, that makes our family Lutheric.  Or Catheran.  Whatever.

Our kids have gotten a taste of both.  Some Sundays we go to a Catholic church Mark chose; some Sundays we go to a Lutheran church I chose.  The boys don't care which one we go to, they like all the crying rooms, lobbys and parking lots the same.  That's where they end up spending most of their time.

Aliza has attended Sunday school at the Lutheran church.  She went to vacation bible school at a Lutheran, a Baptist, and a nondenominational church.  I think she liked the Baptist one best because they had a carnival theme.  That's my girl.*

So right now, Aliza is attending religious education classes at the Catholic church.  She is learning about the Apostle's Creed, or as it's known to the Catholics, the "our Father."  She's learning about communion.  And soon she'll have her first confession.  Yesterday she asked us what that was all about.

"Well, you'll go talk to the priest and tell him all your sins, and he'll absolve you of them,"  Mark told her.

I mentally prepared for questions about what "absolve" means.  Or questions about what exactly she should tell him.

"Wow......I have a LOOOOT of sins,"  Aliza replied.

That's Mark's girl.

*This is a little inside joke between Mark and me.  Whenever one of the kids does something that makes us proud, we claim ownership.  ("That's my girl.").  Whenever they do something undesirable, we pass ownership ("That's your girl."). 

Just a couple/three shots

I don't think I could pay AJ in Doritos and get him to wear his own hat, but if it's his dad's hat, he's all over it.

Aliza's science fair project

You lookin' at me?

Feeling Good on Friday!

Feel Good Friday is usually run by The Girl Next Door Grows Up - she is currently on hiatus and so Lia Sophia Tomgirl is keeping Feel Good Friday going for the rest of us.  Thanks to you both!

I like Feel Good Friday because it reminds me to remember the great things, and to see the good in the things that might not have felt so great at the time.

Jeans Day Fundraiser!

Where Mark works, they have a jeans day on Friday -- just like a lot of places do.

You can also wear jeans on Mondays, on the condition that you make a donation to the designated charity of the month.  Donations for the month of March are going to the National Fragile X Foundation.  Mark is on the committee that helps decide what charity to donate to each month and he pushed for Fragile X.....we are so excited and proud of him!

Home Health Nurse
Last week the home health nurse came out to evaluate the boys and see if they still have Fragile X, I guess.  They do, and we still qualify for funding from the state, which is a very good thing to feel good about.  Not that they still have delays and still qualify as disabled -- I prefer to think of it as, it's great that we still qualify for funding that we desperately need!

Laptop Issues
On AJ's laptop, te "h" no longer works, and I'm going to use that as a reason to feel good on Friday because a) all the other letters still work, and b), you don't even need an "h" to spell Feel Good Friday!

Homework
This week I made a dinosaur diorama and two science fair projects - wait, I mean ALIZA did a dinosaur diorama and two science fair projects.  I am feeling good about all that because it's DONE.  And it's definitely "feel good" material because last night at dinner she actually thanked me for all my help.  What a sweetheart she is.  We are doing something right with that girl!

MVMOM Sale
The MVMOM Used Clothing & Equipment Sale is in two weeks and I haven't done a thing to get ready for it.  I have a ton of things to sell and none of them are entered into the system yet, much less hung on hangers and labeled.  This is something to feel good about because... well because I still have almost two weeks to work on it, and now that the science fair is over, maybe I'll fit it in somewhere!

Field Trip
One enormous feel good opportunity we had this week was of course, the field trip the boys took to the Children's Museum!  I was pretty nervous.  We have had some difficult outings with these guys lately, but this one was a good one!

Doctor Visit
AJ and Zack also had a successful trip to their doctor this week and they not only tolerated the exam very well but they both left with a clean bill of health!

Cute!
AJ said the cutest new things this week.  1) Yesterday when I told him to find his Big Sister Dora book so we could read it, he went over to the table, bent down to look underneath, and said "Big Sis Dora, where ahhh you?"  Another time I told him I was going to look in the backpack for their sandwich, and he looked down in the backpack with me and said "sandwich, where ahhh you?"  2) And earlier this week he climbed into my lap and curled up and I said "oh, are you my baby?"  He looked me square in the eye and said "big kid."

Book Club
Tonight my book club gets together to discuss Outlander, by Diana Gabaldon.  I love my book club people, I love the cafe/wine bar where we are meeting, and I loved that book.  It's a guaranteed good time!

Next Week
... is a much more "normal" week of school and therapy.  We should get to stick to our routine a bit more, which will be nice for all of us.  We had a fun week, but I think we're all a little frazzled!

The Children's Museum

Wow, I was beat last night.  The boys were beat.  It was a long, quiet night of children sleeping soundly.

Because they had a great time at the Children's Museum.

I did prepare us well, I wasn’t born yesterday. I know what to do to help the boys feel calm and help them adapt to breaks in our routine. They get a couple of medications in the early afternoons to help them with anxiety and hyperactivity. Yesterday, we had those meds before we left. I didn’t think there was anything wrong with stacking the deck in our favor a bit.

We left the house a little early, because I was afraid of missing the class, but we were early enough that we got to wait for awhile in the lobby for the bus with the rest of their class to arrive. They waited really well though because there was a lot going on in that lobby, and one of their favorite pasttimes is people-watching.

When the class arrived, AJ got shy immediately and hid behind me.  It was actually all three kindergarten classes, so it was a bunch more kids than they are used to seeing.  Miss Sherry, one of their EAs (educational assistants) was there to help me follow the boys around and generally help them have a good experience.

And then we didn't even see that much of their classmates, because for the most part everyone just ran willy-nilly around the different exhibits and activities.

We ushered them in and toward the water-play area and suddenly AJ forgot all about his shyness.  Oh, the water!  They could have stood back and watched the other kids playing with the boats all day long!

And then they spotted the bubble table.  This girl was awesome at making giant bubbles and she seemed to enjoy entertaining AJ.  She tried to hand him a bubble wand, but he didn't take it.  So she just made bubbles with both hands.



It was difficult to convince AJ that the lego table wasn't for sitting on, when that other guy was sitting on it.

Eventually we had to strong-arm them out of the water area or they wouldn’t have seen anything else in the whole museum.  There wasn’t a whole lot more they were interested in, though.  We walked them through the Lego castle displays and the Earth room.  They did enjoy the slide and tunnel.

None of the pictures are very good because I had the pocket camera along, and I was more focused on keeping the two boys in sight than getting the best angle for the shot.  Also this camera has a delay of between 7 and 13 seconds every time you push the shutter button, so basically you just aim it in the right direction and then wait and hope for the best.

I'm glad we decided to go on the field trip.  It was a great experience.

Breaking the Unbreakable

Bad news.  It seems that Zack has broken the Fisher Price Kid Tough DVD player.  The one pictured here.

See, it can withstand being thrown down the stairs, stepped on, or probably even driven over.  What it couldn't take was a kid who must stick his hands in and around where the DVD goes. 

That, Fisher Price, is where your development team was misguided.  What were you thinking?  Of course if the thing is going to open up wide enough for a kid to stick a DVD in there, he is also going to have to explore it thoroughly and try to stick other things in there.

Sigh.  Does anybody else make a product they claim is unbreakable?  I'd like to rent Zack out as a tester.

Hugging it out

Yesterday Zack and AJ hugged each other, for what I think was really the first time.

I know they adore each other and are emotionally codependent.  But we don't see much physical evidence of that, other than AJ crying if Zack cries, and both of them being out of sorts if one is absent for some reason.

Well I guess that's not entirely true.  They do sit together and cuddle.

But yesterday AJ hugged Zack, and Zack hugged back, and it was very possibly the cutest thing I'd ever seen.

AJ:  "aw, I love my brother."  Zack:  "Whatever, as long as I can still watch You Tube...."

Your Child Might Have Fragile X If.....

This was a forum I started in My Fragile X Community in December of 2009, and it took off and developed a life of its own.  Dozens of people added their thoughts and interpretations of what their FX children do that says "that's FX!"  It has been resurfacing every once in awhile for over a year now.  Here are a couple I started it off with:

"He has an uncontrollable urge to lick glass. Windows, mirrors, aquariums...and being in public does not reduce that urge!"

"You never go anywhere without some snacks, because eating is the only way to get your child to stop making all that noise."

Here's some of the other entries made.  I think it's a great list of typical Fragile X characteristics!

"Hand flapping....definitely!"

"I often wonder if I attached wings if Jake could fly!"

"How about chewing on clothing, my son ruins every shirt he has!"

"Chewing ice...this is new, he has only been doing this for a few months now."

"Everything you look at, you ask yourself "Does this have good "wave" quality?" "

"LOL, ours is "will it spin?" " "Logan likes things that make a certain wave when he wiggles it up and down! Also, I never leave home without a bag of fruit snacks and an extra string in my purse....yep, thats Fragile X!!"

 "You have watched the same 5 five minutes of any video a thousand times without actually seeing the entire video."

"Jack's never seen a toilet that doesn't need flushing!. (at least once!)"

"Has the cleanest bedroom in the house as anything he doesn't want in his room gets thrown down cellar"

"Walks around the house in boxer shorts and a blanket held over his head"

"Knows how to find every YouTube video in portugese, and laughs hysterically while watching them over and over"

"Won't eat his pop tarts in the morning unless they are on a specific dish, and always breaks off the upper right corner and its standing up before sitting down at the table"

"your 5 year old can't tell you "Happy Mother's Day", but he CAN finally say "mom" and that is even better!"

"You've ever had to apologize to a stranger in Walmart because your child liked the texture of their shirt (or pants, or hair, or any item in their shopping cart) :) "

"they've ever turned on all the lights, stood over your bed, peeled your eyelids open at 4am and said "Hi You! Juice! Play! Up, No sleep. All done." stolen your covers, pulled your legs over the side of the bed, and demanded cheetos. "

"if your home decor includes one or more yoga balls."

"if you have alarms in your home to let you know when people are going out rather than coming in :)"

 "Your child might have Fragile X if you can name every gluten-free item on every menu in every restaurant chain." 

"if your child cannot spell or say his name but can use the dvd player, remote control or pc better than you."

"if you still use a stroller at almost 4"

"wear the same pair of Converse high tops everyday because they are the only shoe he can't get off in 2 seconds flat"

"know the loudest places to eat (if you dare)"

"are always stocked up on snacks"

"both of their hands are always carrying something"

"don't ever get to sit down at a party/family function for fear they will throw something in someone's drink, also arrive late and leave early to everything"

"no matter if the ocean is 40 degrees, he is going in and dragging you with him"

"he starts to growl under his breath like a sixth sense, he knows he will not like where you are taking him, hint, he is right. He will not like the place and you will leave. It takes one time to realize this."

"he can't say one little word, but can laugh until he snorts at the same Spongebob cartoon in the exact same spot like it is his first time watching it"

"even though he can't talk or read, he knows when you call the wrong Thomas character and will keep pointing at it until you call it by the right name."

"You buy french fries, chicken nuggets, Goldfish crackers, bananas and grapes at Costco because they are the mainstays of your child's diet"

"You are starting to wonder about your impact on the local landfill from all the juice boxes you go through!"

"You dread a trip to the dentist with your child more than you do for yourself...and I'm talking even a root canal!"

"If you have to stop singing "Happy Birthday" at his two-year party with family because he is so incredibly overstimulated from people and noise that he starts screaming, hitting himself and just plain freaking out."

"And decide it would be better to schedule 30 minute rotating intervals for family to stop in visit, give a present, have cake and leave for the next person."

"Kolton can be playing in the opposite end of our house, but if I open the microwave, he is right there wanting to know whats going in!! Same goes when I start my blow dryer!!!"

"I carry anything that can flip, roll, spin or edible whenever we leave the house:) And forget walking thru a parking lot, we have to stop and touch every wheel/tire on every car we pass. In Wal Mart, I cannot go NEAR the bicycle isle, unless I have time to let him touch all the wheels there too:)"

"And he can hide all of his pacifers and I mean ALL of them, then at bedtime when you and every other member of your family has searched the whole house over 2 times, the little squirt is sitting in the bed with a paci in his mouth. Like, where did that come from?"

"I had taken my son, Tom in for blood work one day (which is really traumatizing for him). It took a staff of 4 people to keep him in a calm hold. As the technician was going to draw blood, Tom said "Lets all pray", and everyone so focused on trying to keep him calmed down said nothing except for Tom, he said "Lord, please have mercy on me!" They drew the blood and everyone was relieved. I then left the clinic with Tom remembering what he had said. I broke into laughter, thinking exactly of what was said. My son never seizes to amaze me in whether it is something that he says or something that he understands. Tom, you are the greatest!!!"

"I unpackaged my new flat screen tv, and my son 5, walked up to it, looked it up and down and sluurppppp licked it. I got the box out and packed it back up till I could get it mounted on the wall!!! LOL"

"The things he says make no sense but somehow seem to fit and become family sayings. --
"that is so Uberdeconstructional!"
"You can't blame a girl if you can't see one"
"Some day's you just never know"
and my favorite...
Goin' to heaven...that makes for a long day"

"When the teacher tells your child, before walking to the cafeteria, no hopping no jumping no skipping no flapping."

"When he sees a latino person and you have to quickly remind him not to start speaking his version of spanish."

"When you think he's going to bust out your window on the passenger side where he is sitting in the car while having a meltdown only to ask what's for dinner 30 seconds later!!"

"Logan has to wear he socks inside out. He is also obsessed about stop lights. Driving down the road all of the sudden he will yell "red mom" or "green mom go". I love it!"

"if he can't get enough of crunch. (Top Ramen, Popcorn, Chips)"

"if he lives in his underwear (with no clothes over top)"

"if he has several different blankets made of either smooth, furry or slippery fabric"

"if he can't get enough of pranks"

"if he keeps his stuff "just the way he likes it""

"If you plan every outing around destinations that have elevators."

I love these.  Every single one makes me smile.  If you haven't been to My Fragile X Community before, you should definitely head out there and check it out.  It's a great place to connect with Fragile X families.

Freshly bathed.

What Would Temple Grandin Do?

The boys' kindergarten class is taking a field trip next week to the Children's Museum.  They have never been there, mainly because I have never been there when it wasn't a madhouse.

The teachers left it up to me whether the boys attend.  The two other kids with autism who are in the class aren't going. If the boys go, they’ll have one attendant with them and they suggested I go along as well, and I say Um, Thank You, I’d suggest that too! What is that one attendant going to do when they run off in opposite directions?

So my knee-jerk reaction was to say no way.  I didn't want to take them out of their routine. And I can’t picture them at the Children’s Museum. I just can’t. All those kids running around like maniacs, all that noise and bright lights….

Actually, I think AJ would like it. He’d get over-stimulated after awhile but he’d have a great time. Zack on the other hand, would get over-stimulated in about 8 seconds. And then he’ll do that scream. That scream that makes everyone stop what they are doing and look over at him.

So I was leaning toward saying no, but I asked the people on the Fragile X listserv for their sage advice, and got probably 40 responses, every single one of which said GO!

And I asked one of our ABA therapists what she thought and she reminded me to ask myself:

WHAT WOULD TEMPLE GRANDIN DO?

She would say GO!

So I think we’re going to go. It's next Wednesday. God help us.

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.