The Fragile X Files

Do all special needs parents do this?

2012-01-30T11:55:00.001-06:00

I read things like this, and I panic.

http://abclocal.go.com/kabc/story?section=news/health&id=8480328

This child with Fragile X started taking minocycline as a little baby and is now READING at age 4. READING?!?!?!?!
Immediate panic seizes my heart. I could have started my boys on minocycline as babies. I've known they have Fragile X since they were 14 months old. We could have started it the next day.

OMG, what have I done? I missed the boat. If a 4-year-old is reading after taking minocycline, my boys could be writing short stories by now. They could be doing advanced algebra.

Okay, they could at least be potty trained.

See? Irrational thoughts overtake me. I'm terrified that they key to "fixing" them is something that I bypassed. That may be why I felt compelled to get involved in the drug trial.

Do other special needs parents do this? Do we all watch for new treatments and promising medications? Do we all panic that we didn't try the right medication soon enough and now our children are destined to lead unfulfilling lives?

I imagine a big room full of Fragile X families, where those who have been on minocycline are functional adults, and are shaking their heads and looking sympathetically at those families who didn't try it.

I know, it's kind of ridiculous. At least I'm not too dramatic, right?

See, I hear things like what this article says, and in my mind, if a 4-year-old with Fragile X is reading, that equals CURED.

When people tell me that their child is able to function better in public and talk more and be less anxious on the STX209 medication, to me, it's like they said CURED. I knew it wasn't a cure. In the front of my mind. But in the back of my mind, my expectations soared. I fantasized that we'd all be shocked at how dazzlingly advanced they were, on this trial med.

I'm not shocked. I'm pleased. But the changes aren't as mind-blowing as I'd expected.

There's reasons not to try minocycline yet. I've heard you aren't supposed to give it to children until they are around 8 years old. Until all their grown-up teeth come in. Because if you take minocycline before all your grown up teeth come in, it'll turn them gray. Not just a little grayish. Totally, throughout the whole tooth, dark gray. Noticeable, cannot-be-bleached gray.

So one might ask herself; what's the lesser evil? Full mutation Fragile X, or gray teeth?

I didn't bother answering that question because it seemed like most of my fellow Fragile x parents were waiting until the grown-up teeth came in. Or avoiding minocycline altogether, because it is an antibiotic, which taken long term can cause immune system problems and will kill all the good bacteria in your kids' stomaches. Making them get sick more often. Causing them lots of physical problems.

And above all else, it's not a CURE. It's a medication that helps a lot of Fragile X patients. Not 100% of them. But many of them.

But, CRIPES! READING! She is excelling in at least one area of her development.

Not a day goes by that I don't argue with myself. I'm never, ever sure we are doing the right thing. I sure hope that boat doesn't sail away without us.

More iPad Apps

2012-01-27T09:09:00.000-06:00

Awhile back, I reviewed some iPad apps that the kids enjoy. We still love those, and we are discovering new ones all the time. Here's a few more that the boys are loving right now:

Mr. Turkey is a really fun book that we downloaded around last Thanksgiving, but AJ still loves looking at it. Everyone in this book is looking for Mr. Turkey, and on the last page you can upload a picture of your child and HE finds Mr. Turkey! So cute!

Very cute, interactive book. AJ sort of stims on the first couple of pages, over and over, but if I sit with him, I can make him sit through the rest of it.

Elephants Bath is another interactive book. You can "play" with the toys on each page, including throwing a ball around and making sticks bang on a drum, there's a little butterfly on each page that you touch and it flies around, and on the page with the elephant in the bath, you can pop the bubbles!

Color Dots is so easy, and so fun. When you start it, there's one dot, and it moves around the screen until you touch it. Then there are two dots that move around, until you touch them. Then three. And so on. At Christmastime, the dots became Christmas tree ornaments, which no one was as excited about as me. But you know - it's the little things!

Somewhere I read something that recommended Letter School, and I wish I could remember where, so I could go back and thank them. It encourages kids to draw the letters, which is something both my boys have such a hard time with - purposeful writing/drawing. There are lots of apps to help with drawing/writing skills, but most of them move too slowly, or are too hard, or are just boring. This one moves along quickly and rewards the child with fun little actions. This was $2.99, I think, and totally worth it.

This feeds into our love of Dora and Diego - anything with recognizable characters and music is going to be a hit with my boys. This is also an interactive book. Each page has puzzle pieces to put in place.

Buzzle is a great, free puzzle app. Four detailed, bright pictures with specific items missing. Those items appear one at a time in the upper right corner, and you just drag it down to the correct spot in the picture. AJ loves it.

Little Puzzles Preschool Games is a great puzzle app too. Simple photos of toys, vehicles, animals, and other things broken into just four pieces. Drag the pieces together to form the picture. AJ loves this one too.

Oh, Injini. Injini is so great, I am tempted to give it it's own post, all by itself. It includes a variety of great activities; puzzles, matching cards, and line tracing. There's a section with farm animals and when you select the sheep, a razor appears and you have to rub it all over the sheep, shearing it. There's a bunch of eggs that you touch a few times to crack them, making little chicks appear. There's a game called "Find It" where a drawer opens and you have to find an object. It starts with just one and works up to 3 objects to choose from. The puzzle starts out with one piece, and works up to 4 or 5.

Here's my one (minor) complaint with Injini - I want the full version BADLY, because both boys have had such a great experience with the free one, but the full version is $49.99! I could get it for them for their birthday coming up next month. But it makes me ill, to think of paying that much for an app. I keep hoping it'll go on sale, or something. If you ever see a sale on this one, PLEASE email me immediately!

My greatest fear

2012-01-25T13:11:00.001-06:00

About three weeks ago through Facebook I met a mom in Maine, who has identical twin boys with Fragile X -- just like me.

And of course, any mom with children with Fragile X is like a sister to me.

So to find another Fragile X mom with identical twins is really, really special for me. I belong to the local multiples club and that's been fantastic. Any mom of twins, triplets or more will tell you there's nothing like the camaraderie we find amongst each other.

That is maybe even more true with the Fragile X moms. We have a thread of likeness strung through us that we don't find with other people.

So to find both of those in one person is like Christmas Day for me. I run and cling (well, figuratively) to this person, because I think this might be the one person, among all the others, whose life really will be JUST like mine. I know it's a little illogical, but I'm attracted to people with the multiples/Fragile X combination. I beeline for them. Can't help it.

Her name was Sara, and her identical twin boys with Fragile X are 13 years old. I looked through all her pictures of them -- they are so gorgeous! Two little blondies, looking just alike, sitting together, making faces at the camera, wearing their matching glasses. With something of that Fragile X look in their faces that we FX moms have all come to recognize, and adore.

We exchanged several emails, chatting about our boys. We shared pictures and stories about our lives. I asked her if she'd be coming to the International Fragile X Conference in Miami next July, and she didn't think she'd make it. But we hoped we'd get to meet in person someday. I felt such a great connection to her.

Which is why it came as such a heart-skipping shock to find out she'd passed away, only about two weeks after we met.

Any death of a young person, a young mother at that, is a horrible tragedy. Nobody wants to orphan their children.

When your children have special needs, you can multiple that by 10.  Leaving my boys, suddenly, like that? It's my greatest fear, and I bet I share that with most of the moms of children with special needs.

We know we are our childrens' best advocates. Supporters. Teachers. Cheerleaders. Caretakers. Butt-wipers. Nobody is going to do it with the fervor and love and intensity that we do. There is no substitute for the Momma.

Of course, I don't want to leave Aliza either. But it's different with her. She's neurotypical, to use the current politically correct word. She's only 9, but she's street-smart. The boys won't be so street-smart. I try to focus on the potential the boys have rather than the limitations, but reality sometimes rears its ugly head. The reality is, they are going to need their mom in more ways than Aliza will, and for a lot longer.

We reluctantly let go of our special childrens' hands to let them go to school. We don't very often have babysitters for our kids who aren't grandparents or other relatives. As much as we might like to avoid the words "normal" and "different," our kids just aren't like other peoples' kids.  They are vulnerable. They really need us. Nobody is going to provide care as well as we can. (And when I say "we," I mean "I." But I'm pretty sure I'm not the only one.)

Sara, I'm sorry I didn't get to know you better. I think often of the husband and family you left behind.  I think often of your sweet little twin boys. And I pray that God will provide an advocate for them as devoted as their mother was.

Proof - They ARE still teaching cursive in school!

2012-01-24T09:15:00.000-06:00

Playing Mad Gab with AJ

2012-01-20T09:21:00.000-06:00

"Chog - a - don?" AJ asks for a specific Wonder Pets episode.

(Yep, The Wonder Pets are back into our video rotation. We currently watch Wonder Pets, Super Why, Little Einsteins, and now and then I throw in a Mickey Mouse Clubhouse, just to keep them guessing.)

"Huh?" I ask.

"Chog - a - don." AJ insists.

I begin to scroll through the episodes we have DVR-ed. Hm, what sounds like Chog - a - don?

It's like that game Mad Gab, where you have to figure out a word or phrase based on a word or phrase that sounds like it. Like "knick hulk hid men" = Nicole Kidman.

I play Mad Gab almost every day. Although I don't always get a clue with the correct number of syllables. AJ likes to keep me on my toes.

Scrolling, scrolling..... Wait! There it is!

"A Job Well Done?"

AJ lights up. "Yes! Chog - a - don!"

Thanks to Carly Fleischmann

2012-01-18T09:03:00.000-06:00

If you haven't heard of Carly Fleischmann, let me introduce you. Watch this video. It's almost 10 minutes long and usually I hate videos (sorry, vloggers) because they often don't get the point across quickly enough and they assume I want to see lots of things I don't, but this one? Every single second of it is astonishing.

She's never spoken a word, verbally, but she can type. She can express herself beautifully on a keyboard. And she can clue the rest of us in on how it FEELS to be autistic.

I'm fascinated by the way she describes how she feels. "When you can't sit still because your legs feel like they are on fire, or it feels like a hundred ants are crawling up your arms."

On why she bangs her head: "Because if I don't, it feels like my body is going to explode. It's just like when you shake a can of Coke. If I could stop it I would, but it's not like turning a switch off. I know what is right and wrong, but it's like I have a fight with my brain over it."

"I want something that will put out the fire."

I can't even quote the part where she talks about how much she wants to go to school with normal kids and not have them be afraid of her. It's too heartbreaking.

She's provided a window into our childrens' souls. For those of us who have watched our children do awkward, odd and bizarre body movements, this is like answering the greatest mystery of life. Her words are the holy grail.

It just goes to show that our time-honored and trusted methods of determining someone's intelligence are crap. Sometimes one's body is unable to express the intelligence inside. Obviously she can't take an IQ test, but obviously she is very bright.

The next time you see someone flailing about, behaving in a socially unacceptable manner, and you assume they are mentally disabled -- remember this video. Remember Carly. And know that what you see happening to that person on the outside might have nothing to do with what's going on inside.

Yesterday at our house, and why it might look like we should be on Hoarders.

2012-01-17T13:47:00.000-06:00

Ah, the video stash. I knew if I rummaged through here long enough I'd find it.

Where the heck is my pink shirt? It's not in there...

Maybe it's behind here.

Wait, what's he doing?

Looks kinda fun...

Look - If I keep hitting "back," I can make her say "Boots" over and over and over. It's fricken fracken hilarious!

I don't really care what they do, as long as I get to eat my Eggos in peace.

Deep thoughts about Jack, and people with disabilities

2012-01-13T08:52:00.000-06:00

I've been thinking a lot about Jack Jablonski this week. He's the high school hockey player here in Minnesota who was injured during a game, and will live the rest of his life as a paraplegic. His story is just so tragic.

I think it's his parents, though, who I am most sad for. It's his parents I can relate to. I relate to the grief over losing the child you thought you were raising, and coping with the prospect of raising a child you never imagined you'd have, and doing it all instantly because there isn't time to go to bed and cry when you are a parent.

I am thinking that Jack is going to be a great example of something, though. He doesn't know it yet and neither do his parents. But it's so easy to look at a child with a disability he or she was born with, and only see the disability. If all you've ever known is the child with autism, or the child with Down Syndrome, or the child with cerebral palsy who is in a wheelchair, right from the get-go you make assumptions about what that child is going to be able to accomplish in life. Or not accomplish. Before you have a chance to get to know that child, you already know he or she is saddled with a diagnosis, a label, that will change how everyone perceives him or her. How that child perceives him or herself.

When you hear that a friend's child was diagnosed with autism, immediately you have ideas in your head of what that child is like. Right? I know I do.

I think, though, people are a lot less likely to make those assumptions when someone's disability occurs mid-life, to someone who was born entirely typical, able-bodied and able-minded.

Is Jack any less valuable a person, now that he won't have the use of his legs? Of course not.

Is he less smart? Is he less important? Is he less HUMAN?

Of course not.

Shouldn't it be that way, for every person with a disability?

No matter how they came about it?

Let's all think on that for awhile.

I read once that with innovations in protective head and body gear, in the last few years soldiers being injured in Iraq and/or Afghanistan or elsewhere are much more likely to survive their injuries, and come back home with a disability. This means we have more disabled vets than ever before.

It would stand to reason that this would hold true with people injured in other ways, as well. Medical advancements are saving lives every day, but not necessarily returning them to "normal." Which means there must be more people in general living with disabilities today than there have ever been.

This is good news - saving lives is good news!

Now we need to stop allowing people who have a disability to be discriminated against.

We need to stop assuming we know what a person has to offer, based on a word, a phrase, a medical term, or our first overall impression.

“I know of nobody who is purely autistic, or purely neurotypical. Even God has some autistic moments, which is why the planets spin.”
— Jerry Newport (Your Life is Not a Label: A Guide to Living Fully with Autism and Asperger’s Syndrome)

“In an ideal world the scientist should find a method to prevent the most severe forms of autism but allow the milder forms to survive. After all, the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.”
— Temple Grandin (Thinking in Pictures, Expanded Edition: My Life with Autism)

We need to stop seeing people with disablities, and start seeing people with abilities that might not be so obvious.

Quickie Update

2012-01-11T19:07:00.001-06:00

Zack is on a roll. His notes from school today:

Zack has been doing very well lately. I see him as much more focused during activities and very happy at school. Twice today he greeted peers by name completely independently! Great progress all around.

AJ, on the other hand:

Very off today. For independent time, he stood in the corner, very still. Very misty-eyed for much of the day, for no apparent reason, and trying to encourage himself by saying "alright" as optimistic as possible.

I don't know what it is, but AJ's been so emotional the past couple of days. He's always been the more sensitive one, but it's really ramped up right now. I emailed the doctor about it. She said that Zack's dosing seemed good, and maybe AJ needed his lowered, but we should give him a couple more days.

Then this evening, he's been fine. Bubbly, giggly, happy. Maybe he just needed a little time to hang out with mom.

He got this Leapfrog toy out of the toybox and began to play with it, all by himself. Nobody even had to bribe him. He played with a toy, just like a regular boy. So that's worthy of note, as well.

Perchance to Sleep

2012-01-09T11:31:00.000-06:00

I will never feel justified in complaining about a brief, slight lack of sleep. Not after surviving the boys' first two years. I think Mark and I are both permanently brain-damaged from those first two years.

They've been waking up between 4 and 4:30 and coming into our room or each others' rooms. Then while we try to get them to settle down, they wave their arms around in the air wildly, and talk. They repeat favorite phrases from their favorite shows, or else just things they hear us say.

"Hi, I'm Leo. These are my friends Quincy, Annie, and June."
"Swiper no swiping!"
"Hi Zack."
"Okay, boys."
"Yeah, there they are."

(repeat each line 6 times at the top of your voice to get the full effect.)

Complaining that the boys have been waking up before 5 seems petty. They are sleeping soundly from 8ish until 5, usually. It's just that we had gotten used to them sleeping soundly until 6, or even later.

We're such lightweights now. One measly hour earlier, and we're all whiny.

I've never been convinced the Melatonin helped them at all, so we cut back and started cutting the 3 milligram tablets in half to give them. That was maybe around when the pre5 AM rising began to be consistent. So back to whole tablets we go.

STX209
We are up to 20 milligrams in the extension program now. The trial ended in the middle of December and we don't know if they were getting the med or the placebo, but we suspect that Zack, at least, was getting some dosage of it, because his anxiety did improve. AJ might have improved as far as anxiety is concerned. But some other behaviors are rampant.

Then again, he might just be acting like an ordinary little boy. A boy without excuses like autism and Fragile X to blame his behaviors on.

He's been really mischievous lately. Testing both us and his teachers, to see what he can get away with.

I have to hold boys boths hands tight, when we walk from a store to the car or vice versa. Because they won't just walk alongside me. They won't stick by me at all. They'll wander the parking lot, aimlessly, not watching for cars at all, like a toddler might.

Once we are within a few yards of our car, though (and no moving vehicles were present), I could let go of the boys' hands, and be assured they would run toward our car and get in, such was their enthusiasm for going home.

Lately though, if I let go of AJ's hand, he's more likely to run off in some random direction, looking back at me and laughing as he scuttles away.

Mischievous.

At school he'll get up and run off into the hall while they are having circle time. When an EA brings him back into the room, he sidles up next to his teacher, smiles charmingly and says "Hi, Miss Danielle." A real little suck-up.

Yesterday in church, though. something happened that made me immediately think the STX209 medication is working. Or rather, I should say, something didn't happen.

The boys didn't need to be escorted from church. They didn't bounce around, holler, and generally make such a commotion that one of us had to take them out. They sat, they looked around, they ate cereal, and they watched "Super Why" on the iPod.

It was the first time ever that they both sat through an entire church service.

Once in awhile Zack would have a little trouble juggling the iPod while he reached up to put fingers in both his ears, when the music got a little loud. Other than that, no trouble, whatsoever, from either of them. We were astounded!

Finally, I wanted to mention that Mark went to Aliza's school last week, and was the "mystery reader." Every so often a parent comes in to read a book to the kids, and Mark decided he wanted to do that. It was very cute.

Afterward the kids got to ask him some questions of their own. Here are some of the things the 3rd graders wanted to know.

"What is your favorite color?"
"What is your favorite restaurant?"
"Have you ever been to Chili's? What did you have?"
"What is your favorite kind of cake?"
"If you were president, what law would you make?" (Gotta love that kid.)
"Where did you go to school?"
"What is your favorite football team?"
"What is your favorite hairstyle?"

"Grown-ups never understand anything for themselves, and it is tiresome for children to be always and forever explaining things to them."
~Antoine de Saint-Exupery

10 Years

2012-01-06T09:38:00.000-06:00

Yesterday was our 10 year wedding anniversary. I usually let our anniversaries pass without a lot of fanfare, partly because ours is smack after New Years. By the time Christmas and New Years are over, I'm partied out.

But this one - this is the 10th. Kind of a biggie.

So 10 years ago, we looked like this:

And now?

All things considered, I think we look pretty good! Run through the wringer a bit, but after 10 years and three kids, who isn't?

We have had a lot of, um, surprises in the past 10 years. Not that we don't like surprises.

I'll tell you one thing though. I couldn't have picked a better dad for our special needs children, if I'd had a pile of resumes in front of me, and had done interviews. (I guess, in a way, dating is interviewing, isn't it?) I don't have any idea how he dealt with the news that our twins have Fragile X Syndrome, because I was a broken down wreck for quite awhile. I went through the necessary motions of childcare and work, but really wasn't functional. He picked up all the pieces and kept our family going while I lost my mind. Not many dads would have done it as well as he did.

I hope I've been as supportive of him. And I hope for fewer surprises in the next 10 years. If there must be surprises (and I figure, there probably must be), may they be pleasant ones.

And now, a short look back.

Newspaper headline on our wedding day.

Some of my girls.

Ken and Mike

This little tyke just graduated from college.

Aw, the cuteness! Of course, they are cute teenagers now.

A candid shot of Mark and our dads that I like.

p.s. Are we officially an old married couple?

Zack Funnies

2012-01-04T20:04:00.001-06:00

Just a quick note to mention a couple of funny things Zack said this week. Most of the time my funny-little-boy stories are about AJ. He is the comedian.

Zack gave him a run for his money this week, though.

One night I was getting the tub ready for Zack to take a bath. He came in and immediately got naked, because baths are very fun. He bounced and hopped excitedly around the bathroom while I rinsed out the tub and then he came over and lifted the toilet seat.

(They aren't potty trained even a little bit, but we make stabs at it occasionally.)

I asked him "do you want to sit on the potty?"

He said yes, so I helped him hoist himself up there. He got right back down less than a second later. He turned around, reached up to flush with one hand (even though he hadn't done anything worth flushing), and with the other hand he waved into the toilet and said "Bye, pee. Gracias."

Thank you, Dora the Explorer, for making my boys not only biligual, but very polite!

The second big talking event Zack had was earlier this week. I was downstairs cleaning up the spots where the cat pooped (because apparently, I don't get to clean up enough poop from these boys every day, the cat thinks I need to be more involved in her bodily functions as well.)

Zack came halfway down the stairs and said "Mom!"

I turned around and said "hi Zack, whatcha doing?"

Zack took in the scene -- me, crouched in front of several icky spots on the carpet with some carpet cleaner and paper towels, and announced ,"Oh, mess. Bye!"

It was just so unusual to hear a clear, meaningful message from him.

I just had to record these two instances for posterity.

Of course we are wondering whether the extra talking Zack is doing might be a result of the STX209 medication. Hard to say, but it's definitely a possibility.

Life in Fast Forward

2012-01-02T07:52:00.001-06:00

We used to have this board game in which players would be given a news story headline, and then they had to determine what year that headline was in the news. My mom always said she was no good at getting the ones that happened in the 1970's, because she had little kids in the 70's and basically missed that whole decade. We always thought that was funny.

Now, I totally understand where she was coming from.

It seems like when you have kids, suddenly life starts moving in fast-forward. Does this go on and get worse as you get older, so that by the time you are elderly (whatever age that might be), entire weeks and months go by like a flash of light? Nevermind. I don't think I want the answer to that question.

When I was in elementary school, I remember how very, very long a school year felt. It seemed like a lifetime between when a school year began and when it ended. Maybe that's because a person changes so much, so quickly, during those early years of life.

I wonder if it seems that way to Aliza -- like a lifetime passes between the beginning and end of a school year.

Ever since 2003, the year Aliza was born, life has sped by in sort of a blur. When I do think of a year past, it is defined by how old my kids were. If I hear about something that happened in 2007, for instance, to get a sense of where we were at back then, I think -- that's the year the boys were 2, Aliza was 4.

2008 doesn't seem like that long ago, and yet the boys were only 3, Aliza was only 5. My big 3rd grader was just starting kindergarten in 2008.

2010 was 2 whole years ago now. That's more amazing that the fact that it's no longer 2011.

And justlikethat, Christmas 2011 is over.

Now that I've got my hands on it, I'm outta here.

Whatcha looking at, Bob?

Matching snuggies! Made by Grandma!

Look how great the pink shirt goes with my new Christmas PJs!

I don't really do New Year's resolutions, but I am going to try to be better about hitting the "pause" button on our lives, and take lots of pictures. I don't want to miss this decade.

5000 Kisses

2011-12-31T07:32:00.002-06:00

I know all the other blog people are doing "year-in-review" posts right now, but I'm not sure anybody but me is really interested in that, and I don't have time to sit and reminisce through the past year's posts right now anyway.

So instead I'm going to wrap up 2011 by telling you about the super cute thing AJ started doing this week.

I've always kissed my children a lot. They sit on my lap and I kiss their little heads all over. If 5000 kisses were a cure, I'd have wiped out that Fragile X before their second birthday.

So it was about the cutest thing ever, when AJ started giving out his own kisses.

Like a lot of kids with autism and/or Fragile X Syndrome, he has his own way of doing it. He leans over and gently touches me with the top of his head, and says, "Mmmwaah."

They are the best kisses ever.

Wishing you the happiest of new years....

To be continued....

2011-12-29T09:30:00.002-06:00

Sorry for the lapse in posts. The kids are on Christmas break and if I turn my attention away for more than a few seconds, naughtiness ensues.

We don't generally let the boys handle the DVDs because that's how they get scratched up, cracked in half, and destroyed. So we keep them in a case, up high where they have to stand on top of things to reach them.

If I leave them alone for a few seconds, they pile things up precariously to climb up to them. And get them out.

At this moment they are on either side of me, one trying to take the mouse and one trying to hand me the remote. So I'm done here. Later.

Twas Two Nights Before Christmas

2011-12-24T07:04:00.000-06:00

... and two smudgey-faced little boys read stories to themselves before going to sleep.

... finally settling down with visions of gingerbread houses with Dorito fences and Cookie Crisp walkways dancing in their heads.

They made this at school, and I'm mad at myself for not thinking of this first. Incorporating their favorite foods into a creative activity - genuis!

Wordless Wednesday - Another of Zack's Clothing Obsessions

2011-12-21T08:58:00.000-06:00

Dude, this hat is fabulous on you! Let me put my Dorito fingers on it.

Bubbles at Christmastime

2011-12-19T09:26:00.004-06:00

The sun was shining yesterday, and it was 44 degrees, and while in many parts of the world that would be too cold for going out to blow bubbles - here in Minnesota, the kids decided it was perfect weather for it.

If we aren't going to have a white Christmas, we might as well get out there and pretend it's spring.

AJ was more than happy to come out and play with the bubble gun, but Zack, as usual, couldn't be persuaded to leave the computer.

I had a moment of insanity when I suggested this weekend that we bring all the kids to the Holidazzle parade in Minneapolis, but I came to my senses. Maybe we can pull that off next year -- especially if the STX209 medication does wonders for their tolerance.

It's less than a week until Christmas and here's where we are at.

Number of cookies eaten: a double batch
Number of cards sent out: 31
Number of cards received: 58
Number of cards yet to be sent: 27
(this number is fluid depending on what arrives in the mail this week)
(and yes, check my math if you want to)
Number of times I've had to say "Santa is watching...." : 11
Number of presents wrapped: 0
Number of presents yet to buy: 4
Number of times I plan to panic before Christmas: 0
Number of times I will actually panic: 9
Number of days until Christmas: 6

And I have to sign off now and get some things accomplished, before I begin panic #1.

Reflecting on the STX209 Drug Trial

2011-12-16T13:28:00.000-06:00

Well, the trial has ended. And I STILL can't answer that 64 million dollar question:

Were they on it, or weren't they?

We won't know what's been in these boxes until the end of the whole trial. When the drug is approved and ready for the market, we'll finally find out. So, estimates are, sometime in early 2014. We won't know for around 2 1/2 years!

So now we start the extension. The part where we give them the medication, beginning at a small dose and working our way up.

At our last appointment they staff did some testing to measure the boys' current cognitive abilities. They were basically IQ tests. I hate IQ tests. They don't measure what a person can do, they measure what a person can't do. They are meant to separate the "averagely intelligent" from the "brilliant." They don't work on the "horse of a different color." (okay maybe not, but that's just how I feel. My boys have tons of capabilities that those tests don't come near measuring. I get a little testy when we talk about IQ tests. Pun intended.)

But in this case, I welcomed the tests with wide open arms, because they expect the STX209 drug may help long term with cognitive abilities, and they want to have a clear view of where the boys are at right now, before they start the extension. I also welcome it because I trust that the drug study will use methods of testing that will show more clearly what my boys are capable of, than a test that was created for "typical" children.

So I say, yes, measure away.

The doctors and assistants and staff at RUSH University are utterly wonderful. They take such good care of us. They make the process and procedures of a drug trial much less difficult and are always considerate of our special situation. Probably because every one of their patients has a special situation. They are quite familiar with those who are a "horse of a different color."

So now that the trial is over, I made a list of Pros and Cons to help me organize my thoughts on the experience.

PROS

The boys have become excellent little travelers. There have been lots of good experiences and benefits from the traveling aspect.
I get to see people I mostly only know online at the clinic. This last visit I saw Holly, and the visit before this one I saw Kristie (okay I barely saw Kristie, but Aliza saw her - that counts, right?)
Like I mentioned above, the doctors and staff at RUSH are all fantastic, but it's especially great to be in a study with Dr. Elizabeth Berry-Kravis. To be on her radar is to make sure you are in the right place at the right time, when the best treatments become available.
Obviously, there is the benefit of helping a good medication get onto the market and available to people with autism and Fragile X.
We are getting a head start on a medication that, long term, will help with mental abilities. By the time it's available through regular prescription, the boys will have already been on it for 2 years.

CONS

The expense. You can use your imagination and figure out what we've spent on hotels, gas, food, and incidentals on 5 trips to Chicago and back. And oh, have I mentioned the toll roads? Once you hit Illinois, there are 3 or 4 tolls to pay to drive there. They range from 30 cents to $1.60, but starting in January they are raising rates to either $1.50 or $3! Reimbursement is something we've talked about a lot, and heard lots of encouraging words, but we have yet to see any reimbursement. We aren't doing this for the compensation, but we aren't independently wealthy either, and this is taking a huge toll on our family economy.
Leaving Mark and Aliza back at home. Splitting up the family so often is hard on all of us, but it's hardest on Aliza. Her teacher told me this morning that Aliza mentioned she was missing me this week, and I found out she had a little stress breakdown in the cafeteria yesterday. I know Mark does his best to make it easier for her. But he's not The Momma.
General hassle and inconvenience - the time the boys have to take off school, and Mark has to take off work.

I guess this is one of those situations in life where I have remind myself to back up, and to see the whole forest. I have to work to ignore each individual tree. I've got to keep my eye on the prize - which would be, two boys who are intellectually able to be self-sufficient and happy. That's what we hope this medication could do. And if it does that, it's absolutely priceless.

iPad App Reviews - Games

2011-12-09T14:37:00.000-06:00

A couple of months ago we got an iPad. Before we got it, I spent some time researching and debating whether to get an iPad or one of the other tablets out there. I didn't want to give in to that concept that Apple has created the best tablet, and all the others are imitators. Plus, I feel like I'm chained to iTunes with my iPod, and I hate that.

But it came down to autism apps. The iPad has the most autism apps, and everyone who had one told me it was the only way to go, if you really wanted to be able to use it with your kids.

So after saving up for several months and then getting some money for my birthday, one day I went to Target and picked up a few groceries and an iPad.

All those folks who advised me weren't wrong. Searching for "autism apps" in the App Store on the iPad brings up 500 apps, which I think is the maximum it can show for one search. In actuality, I've read there are over 100,000 apps for autism available for the iPad.

It can be pretty overwhelming, but thankfully there are a bunch of places online to find lists of great iPad apps for autism. Just try googling it.

Here are a few that we've tried, and our experiences with them.

SUPER WHY!
Our absolute favorite.

Our boys are big fans of the PBS show Super Why. In this game, you can select any of the four characters and play four different word games. This has been the most popular app with the kids, so far. It was $3.99 and worth every penny. I know it's because they were fans of Super Why first, though. If there weren't recognizable characters, neither Zack nor AJ would want to play it.

SW Paint

I bought this one for $3.99 also, just because it is a Super Why app, but nobody likes it. The boys aren't interested in coloring, and even Aliza gets bored with it. I knew they weren't big into coloring, but hoped that the Super Why theme would get them interested. Not so much.

PBS Kids Videos

They love it because it just shows videos. But at least they are PBS videos, and they are brief little clips, encouraging quick action to show another video.

iTouchiLearn Numbers.

Both boys have gotten into this one. We started with the free version, which has activities just for numbers 1-3, and they liked it so much I splurged and bought the full version for, I think, $2.99. It consists of games and simple activities with numbers 1-10. For example, touch the "10" and you get a bowling ball and pins. Touch the ball and watch it roll down the lane and knock down all the pins (it always gets a strike). Then touch the pins one by one, and they number off 1-10.

There are a couple more iTouchiLearn apps I just downloaded, they are iTouchiLearn Words and iTouchiLearn Life Skills. We'll see how the boys like those after school today.

Starfall ABC's

This is an app the boys enjoy, although I have to really strongly entice them to play it. Once we get it going though, they like it. You just pick a letter and then there's some words and very simple actions to go with the letter.

Futaba Word Games for Kids

I think in a few months this might be a very fun game for Zack and AJ, but right now it's just a little advanced for them. It's a game for up to 4 players, and a picture of an object appears in the middle of the screen. Then, each player has 4 buttons with words to choose from, and one of them is the correct name of the object. The first one to touch the button with the correct word gets a point.

And they aren't all words that appear in the top 300 sight words list. They are words like "motorcycle" and "octopus." So, easily recognizable items, but not necessarily "sight" words.

Uzu

Uzu is so simple. It's just a screen full of tiny colored lines and dots, like confetti or fireworks, and anywhere you touch the screen, the lines and dots swirl and rotate, creating visually thrilling, constantly moving patterns.

You can change the settings to make different colors and patterns appear. I think it was 99 cents.

Dora Vacation

This is basically a book with some interaction involved, but not required. Both boys enjoy it, but it's never been the favorite I thought it would be.

Diego Snow

Diego Snow is a snowboard racing game that has always been too hard for them, but I remain hopeful that if I provide motivation in the form of a character they love, they'll learn how to play the game. You never know unless you try. One of these days I'm going to look over and see AJ rocking the iPad back and forth, driving Diego down the snowpath.

In the meantime, I guess Aliza and I will keep playing it and hope that they watch and learn.

I have some books on the iPad the boys like too. Books are so interactive on the iPad. Along with the story there are usually some activities to do and watch. I'll post on that one later next week.

Self-Checkouts (A bit of a rant)

2011-12-07T19:49:00.000-06:00

I'm just going to go off topic for a bit here. I've been shopping quite a bit lately, getting ready for that minor holiday at the end of this month, and I've decided something.

I hate the self-checkouts.

Do I not have enough going on, especially when I'm shopping with my three children, without having to turn a product over 5 times to find the barcode, run it across the scanner 5 more times to get it to scan, and put it either in the bag or on the moving belt before the machine gets confused and wonders whether I want to bag it at all?

And God forbid I should put something on the belt that I didn't scan, or that perchance weighed more than the belt thinks it should. God forbid it should tell me to ask for help from an associate.

Sure, I could go to that one open lane with an actual human doing the checkout. If I wanted to wait in a line that is probably 19 people long, right around Christmastime. You know, with my Fragile X kids, who are so calm, patient and GREAT at waiting.

Besides, in this economy, shouldn't stores be working harder to make my shopping experience as pleasant as possible? Shouldn't they be kissing my butt more, rather than making me do all the work myself?

Okay, rant over. Walmart and Cub Foods, I'm not a fan. Target, you're doing it right, and I still love you.

STX209 Drug Trial - Rounding the Final Bend (UPDATED)

2011-12-05T04:30:00.000-06:00

We are starting our 11th week today.

Two weeks to go.

These last four weeks are a weaning process. If they have been on the medication and not the placebo, right now they are weaning off of the medication.

And darn it if I don't notice some regression in the behavior problems.

I'm so blind, so oblivious, so busy denying that there were any changes in their behaviors and saying I was pretty sure they were on the placebo -- I didn't even really notice how much less AJ has been biting me. And how much less Zack has been biting and pinching other kids, and screaming.

Until it started up again. Zack started screaming about something two days ago. And it dawned on me ... it's been quite awhile since he screamed about something. His "oh no, you're mad, I did something wrong, I'm so upset with myself, please don't be mad at me, I can't take this pressure!" scream.

And the clapping. Zack does this thing where he gives you a pleading look and claps lightly. His way of saying "I did good, right? You're happy with me, right? Please applaud me so I'll know I have your constant and undying approval."

He hasn't done that in so long, but the last couple of days - he keeps prompting me to clap for him.

When I try to hold AJ back from something, he leans over to bite me. Or when I'm trying to change his clothes, and he thinks he has better things to be doing.

He chews on his sleeves. Right up to the shoulder, he soaks it. He also chews on his fingers. Not all the time. But it is a behavior that stopped for awhile, and then started up again.

So again, there are probably 10 different things to which we could attribute the changes in their behavior. The weather has changed in the last week -- it snowed and it is suddenly much cooler and drier. Thanksgiving week was a drastic change from their routine. We decorated for Christmas, which is probably stressful for them.

Or, it could be the reduction of the STX209.

In about a week and a half we go for our last trial appointment. Then we'll start the extension - and we'll KNOW they are on the medication. We'll start at a low dose and work our way up, but at least we'll KNOW.

12/6/2011 UPDATE:
Evidently I forgot to mention that we WON'T be finding out whether they were on the drug or on the placebo next week. We won't know until the entire drug trial is over and it's approved by the FDA - which most likely will be sometime in 2014. Then they'll tell us what each of the twins was getting during the trial..... I'm pretty unhappy about this. I may have to write up some reflections of the drug trial, overall, to publish later.

Fragile X, Autism and Animals

2011-12-02T14:19:00.000-06:00

What is the deal with kids with Fragile X and animals?

Does anyone else notice odd behavior between their kids with Fragile X Syndrome and cats and dogs, or is it just me?

Are other kids with autism (but not with Fragile X) odd about animals too?

My boys don't like any animals. I guess I'm referring mostly to cats and dogs. They are distrustful and afraid of cats and dogs.

Well, except for the little bitty dog that lives behind us. I guess AJ did sort of like that dog when they first met. If AJ was in the backyard and that dog was outside at the same time, they'd meet at the fence and AJ seemed to really get a happy kick out of it, as it hopped and popped and yapped around, on the other side of the fence.

Of course they were always separated by that fence.

Sadie and Dudley are a couple of dogs that live in our neighborhood. Big dogs - both labs. Dogs that come up to the boys' chests. And I can see where that would be intimidating. But Sadie and Dudley are both very gentle and friendly, and none of the other little kids are afraid of them. Neither dog has ever done anything to Zack or AJ to give them reason to be so fearful.

For Thanksgiving we were at Mark's sister's house, and they have a Boxer named Bogie. He is great with all the kids. And Bogie was very interested in Zack and AJ and wanted to sniff them and hang out with them. But they put their hands out in front of them and backed away, saying "Bye bye, Bogie." "No, no, Bogie."

Friday

We had a dog, when the boys were born. A very sweet but neurotic German Shepherd/Collie mix named Friday. When the boys were first beginning to crawl around, Zack crawled quietly over to Friday one day, and touched his back leg and surprised him. Friday didn't like surprises, and didn't like having his back legs touched. He jumped up, snarled, and put his mouth on Zack's face. Left a few little teeth marks on Zack's chin and forehead. And of course, scared the daylights out of him, and the rest of us.

So we found Friday another home with a family who had teenagers who wouldn't surprise him. At the time, we had only had the twins' diagnosis of Fragile X for a few months. I was just learning how difficult it was going to be to teach them to be gentle with the dog. I was enormously overwhelmed at the prospect of raising twins with Fragile X, and had no idea how I was going to keep them safe. I had to let my dog go.

I really don't think Zack remembers that incident, though.

Now I can understand a little more why one might be wary of cats. They are more unpredicable. Our cat, Lily, has never been a friend to the boys. She acts like a typical little sister. She follows them around and gets into their business whenever she can. They walk slowly and cautiously around Lily, never taking their eyes off her, ready to run if she makes a move toward them.

Zack actually had a bit of a scuffle with her too, shortly after she joined our family - he gave her a little shove, and she reached up and scratched his cheek. That's why she is now declawed.

So that could be why he mistrusts the cat. But that was years ago now. And it doesn't explain why AJ too, will walk a wide berth around the cat. It doesn't explain why if Lily walks toward either of the boys, they back away, like I might if a skunk waddled over toward me.

Bob

My parents have a cat -a huge, orange, whiny, somewhat elderly guy named Bob. The boys aren't that afraid of Bob. But that might be because Bob has little to no interest in them. He leaves them alone.

We have pets because I figure it's a good experience for them. I could write a whole other post, though, on thing I do just because it's good for them. I'll call it Ways in Which I Torture My Children for Their Own Good.

Twins in the Family

2011-11-30T09:11:00.000-06:00

There are other twins in my family.

My mom's twin cousins Johnny and Jimmy

Note the interesting and incidental juxtaposition of the picture of Zack and AJ on the mantel behind them.

When our twins were born on Valentine's Day, my mom's Aunt Dorothy (Johnny and Jimmy's mother) was very excited to have more twins in the family. She sent them these cute matching outfits!

AJ is on the left, Zack is the peanut on the right. "Another fraction of an inch and I can bite him right on the ear."

Now, I'm not sure whether this counts as "running in the family," though, since my mom has a lot of cousins and only one set of twins.

I did have a Great Great Grandmother (Mary E. Burt) and Grandfather (Elijah Pinckney Horn) who among a total of seven children, also had twins born on Valentine's Day.

Eddie and Dicie, a boy and a girl, were born on February 14, 1890, in Leake County, Mississippi. They both died young, so states my Family Tree Maker. I can only imagine what it must have been like to carry and give birth to twins in 1890, not to mention losing four babies.

You Might Be an Autism Parent If -

2011-11-28T11:05:00.001-06:00

I'm not much for Twitter. The thing is, there is so much social media out there now, and yet still only 24 hours in a day.

Recently I did get some instruction from some lovely friends on how Twitter works. So at least now I know what a hashtag is, and I know how to use one.

Dropping in on Twitter this past holiday weekend, I discovered a conversation going on with the hashtag #youmightbeanautismparentif. So many of those posts (tweets? I'm still somewhat twitter-illiterate) really touched my heart.

If you didn't see, it, here's what you do - even if you don't "do" Twitter, you can still go to www.twitter.com and do a search for #youmightbeanautismparentif, and you should get a list of all the posts that have been on that subject.

Here's some of the ones that jumped out at me, because I could have written them ((and many of them I retweeted (copied and sent them out to my followers), they were so good)):

Kristeen gordon
#youmightbeanautismparentif your kid could give Houdini a run for his money.”. Amen!

YLMBreadlessannemarie
#youmightbeanautismparentif the christmas school vacation coming frightens you.

RT @PoopingRedGuy: #youmightbeanautismparentif u wonder how a kid that can't deal with any loud noises can be so freaking loud!

MumSpecialNeedsSpecial Needs Mum
#youmightbeanautismparentif your child congratulates himself by saying "good boy" every time he correctly places a puzzle piece!

Sweet_621Lynn
#youmightbeanautismparentif it breaks your heart to see toddlers at the mall laughing, babbling & engaging with their parents. #autism

Sweet_621Lynn
#youmightbeanautismparentif you take your family to a buffet but you know there's NOTHING there your #autistic kid will eat. - #autism

@KatieMollo: #YouMightBeAnAutismParentIf you would give up all your friends if it meant your child could have just one. <-- hits home

JasonoldfieldJason Oldfield
#youmightbeanautismparentif you have a therapy room as a living room

@manyhatsmommyMI:
#Youmightbeanautismparentif sometimes you feel guilty because your child talks quite a bit & u know so many who don't #aspergers #autism

You might remember that we in the Fragile X online community have already had this conversation - I posted about it last March, right here: You Might Have a Child with Fragile X If. So many characteristics of Fragile X and autism are exactly the same; I guess that's why at least 1/3 of people diagnosed with Fragile X also have autism.

Go to Many Hats Mommy to see other blog posts about this same topic. And thanks to her for starting this conversation and connecting so many of us autism parents!

The way in which they are just like other kids....

2011-11-25T18:07:00.001-06:00

All three of my kids, the typical and the FX-ers, have something in common with all other children.

None of them pay any attention to me when I tell them to do something, or to stop doing something, no matter how many times I say it. I have to start yelling, raising my voice to an unholy level that scares dogs and threatens to break glass, and get all bug-eyed and wave my arms around like a manic, before anyone will stop what they are doing and look over at me. Then they look at me like I just sprouted a second head, and Aliza will say (and the boys just give me a look that says)

"Geez. You don't have to scream."

See this looks all cute and cuddly and sweet, but Zack is actually biting AJ on the shoulder here. It's all fun and games until someone is bleeding.

Top 10 Things I'm Thankful for This Thanksgiving

2011-11-23T18:16:00.001-06:00

1. My fantastically fun daughter Aliza and my sweet, loving twin boys Zack and AJ.

2. My parents and inlaws and their endless supply of love and affection for their grandchildren. My parents have brought the boys and I to Chicago 3 times in the last 2 months, and Mark's dad helps take care of Aliza back home when we are away. I couldn't be the great parent I am without their support.

3. Pumpkin spice lattes, pumpkin pie blizzards, and plain old pumpkin pie.

4. The Green Bay Packers and their undefeated season, so far.*

5. My husband - loving, thoughtful, a rock of support for me, and on top of all that - a model father. God was really looking out for me when he brought Mark into my life.

6. Public places that have free Wi-Fi.

7. Friends who understand me, share their great ideas, love my kiddos, and keep me laughing and sane.

8. Every single person who has ever read this blog.

9. Aunts, uncles, and cousins who welcome my kids on holidays; talking to them, playing with them, and generally just treating them like ordinary people.

10. Modern therapies and drugs that give my kids a better chance of having an independent future. I'm grateful to be raising children in 2011 and not in 1811. Read Maureen Lang's books The Oak Leaves and On Sparrow Hill to get an idea of what it might have been like to raise a child with Fragile X a couple of hundred years ago.

Hope you all had a wonderful Thanksgiving!

*Yep, I'm a Packer fan. Sorry if that is a problem. I'm a little defensive about it, which comes from years of rooting for the Packers while living in Viking country.

A Quick Shot

2011-11-20T18:19:00.001-06:00

We discovered something important this morning. Zack is not allergic to penicillin.

He's got strep for the second time in two weeks. Four days after finishing up the first antibiotic, he spiked a fever again, and one of the gooiest noses I've ever seen. He walked around with the "sick" look. You know - eyes half closed, mouth hanging open. He didn't have much of an appetite, and that's not like him. He was sleeping in every morning and that is definitely not like him.

So he took a trip to urgent care this morning, because tomorrow morning we leave for our fourth trip to Chicago and I knew if he needed to be back on some antibiotics, he'd better get started or this would be a miserable trip.

So since he was having his second bout of Strep in two weeks and had just gotten off an antibiotic that apparently didn't do its job, the urgent care doctor decided to give him a shot of penicillin.

Good grief, these kids have been sick a lot this fall.

I like this idea of getting all the medicine done in one quick shot. Literally. Ten days of holding Zack down, twice daily, so I can squirt the "pink" (what he and AJ call amoxycillin) into his mouth has not been pleasant for any of us.

By mid-afternoon today he barely had a fever, and he'd pretty much bounced back. Literally, he was bouncing.

This penicillin is awesome stuff. I wonder if I can get them to cure all my kids' ills with a quick shot from now on.

Was that it?

2011-11-18T08:22:00.001-06:00

Remember how I've been waiting for a "wow" moment, during this drug trial? Something that would make me think this drug trial is working?

I might have had it this week. AJ did something that made me say "wow."

Now, it didn't make me say "WOW!" Just "wow."

What happened was, I was cleaning out a cabinet of games and toys this week, and I'd left a box of animal stencil cards (Usborne, we love them by the way!) out on the floor. (That's how I clean. Some things get put away, some things get thrown away, and some things just get left out on the floor if I haven't decided what to do with it yet. That's how I roll.)

Anyway AJ found it, picked it up, looked it over, and promptly ripped the back off the box. And I ran over to him yelling "No, don't rip that up!"

And AJ handed it to me and said, "Sorry."

"Sorry." I don't think he's ever said sorry to me before without being prompted ("AJ, say 'sorry.'")

So was that it?

It definitely made Aliza and I both sit up and look over at him in amazement.

Before this, though, I would have sworn they were both on the placebo. This past weekend we tested them with our annual trip to see Santa, something that historically both boys have a terrible time with.

This year was no different.

Mark works to keep them from escaping while we wait in a short line.

This one, though, is all set to see Santa, list in hand.

Trying to get a good picture of Santa with the kids. Well, not necessarily a good picture. We'd settle for something where everyone in the shot is actually facing the camera.

This is about as good as it was going to get.

A lot of parents of little Fragile X kids don't do the Santa thing. It's really hard for them, being forced to get up close and personal with this odd looking stranger. And often they don't "get" Christmas and Santa and the whole thing.

But we have always done it. Every year. It's a bit of a tradition for us. It's important to me to try, every year, to show the kids the magic of Santa Claus. And this man, this Santa - oh, he's special. He remembers us. He remembers that the boys have a very tough time and more importantly, he remembers Aliza, and what a superstar big sister she is. And while the boys chew, chew, chew on their chew toys and obsess and panic and scramble to get away, Aliza stares at Santa, with stars in her eyes. And that makes it worth everything.

Thank goodness, we're back home, watching Little Einsteins. Standing on your head makes it look so much better.

AJ Reading - A Short Video

2011-11-15T12:20:00.001-06:00

Here's a short video showing AJ reading the TV screen list of Little Einstein episodes. I'm not that close to him because I didn't want him to notice I was recording him. He gets camera shy.

It ends abruptly, when he comes around to see what I'm doing with the iPad......

Gabby Knows

2011-11-13T10:20:00.001-06:00

Gabrielle Giffords knows what it's like to be nonverbal.

She has firsthand knowledge of how frustrating life is when you can't communicate.

I haven't read the book her husband wrote, that just came out last week. I just read the excerpts in People magazine. But a few words and phrases just jumped off the pages at me.

"...until Gabby was injured, I'd never once considered how disabling it is to not be able to speak."

This is the case for most of us. I don't think any of us who haven't experienced it can consider fully what it would be like not to be able to speak the words that are in your head. Gabby knows. And Mark has had reason to consider it.

"If people can't ask questions, it's not always easy to have a conversation with them. You don't realize that until you spend your life with someone unable to ask a question."

Think about how much mental effort goes into asking a question. The process. You have to wonder something. You have to have the forethought to realize there is something you don't know. Then you have to be able to formulate that thought into a phrase made up of words that will induce the other person to tell you what you are wondering. It's complicated brain activity.

"She had tried to speak and couldn't. She had just figured out that she was trapped. Trapped inside herself. Her eyes were as wide open as I'd ever seen them and the look on her face was one of absolute fear. I could tell what she was thinking: that this was what her life would be like from now on, that she'd never be able to communicate even the simplest word."

These guys know. Actually, they don't really comprehend it the way Gabby does, because it's all they've ever known. Every day they get better at communicating, though. They make requests, but I'm not sure that's the same as asking questions. It's not the same as wondering. Maybe it's a baby step toward wondering.

I guess I just have a newfound respect for my ability to communicate. Everything -- all the workings of our bodies and minds that are normal, typical -- we take it all for granted. The fact that most of us are able to communicate -- to think of questions, pose them and answer them, is such a miracle of the human brain.

STX209 Update: 7 Weeks and 4 Days

2011-11-10T10:11:00.001-06:00

Well, we've been both home and healthy now, for almost a whole week. Finally, we've been able to stay in a routine for a few days, and we are noticing the boys are calmer and happier.

I can't decide whether to attribute that to the return to a predictable routine, or the trial medication.

I'm trying not to see this through rose-colored glasses. I'm trying to be realistic.

Zack is definitely calmer though, in the last week. He bounces a little bit less. He sits and lays down more. And not because he has a fever.

And he talks much more. Both of them do.

I was demonstrating to my parents and to one of our therapists how both boys can read the TV screen, when I bring up the menu of our DVR recorded Little Einstein episodes. I'll highlight one and ask

"What's this one?"

And both boys can tell me.

"Halloween."

For awhile, neither of them would say what the episode was, unless I asked them to. But this morning both of them were watching me scroll through, shouting out which ones they wanted to see.

"Sleeping Bassoon!"
"Good Knight Bad Knight!"
"Glass Slipper Ball!"
"Jump for Joey!"

Typically for twins and siblings, they could not agree on one. But it was astonishing, to hear them shouting out words, trying to drown each other out!

The past couple of days AJ has been so happy. He just smiles all the time, and chatters to himself.

I don't know. Some of that might be a result of STX209.

But I'm still waiting for that "wow" moment. The moment when one of them does something that is so stunning, we all stop and stare, jaws dropping to the floor. The OMG moment. Where we won't wonder if we are wearing rose-colored glasses. We will know this stuff is magic.

Wordless Wednesday - I look good!

2011-11-09T16:52:00.000-06:00

It's not pink - it's "salmon." And I just happen to like butterflies....

This Great Idea I Have for a Class to Teach Acceptance

2011-11-07T10:48:00.000-06:00

The antibullying movement is so strong lately. And that is a great thing. I am happy kids are being taught that mistreating each other won't be tolerated.

But I have an idea how to reduce the tendency for kids to pick on each other in the first place.

Picture taken from here.

There ought to be a mandatory class for elementary students. Something called Awareness and Acceptance. Something to teach them to accept people that are different from them, in any way. Something to show them how to interact and behave humanely. To teach empathy.

I guess it would fall under the category of sociology or communication. That, and maybe health.

And the special needs kids all need to be in that class. Sitting right next to the typical kids.

No, not just next to them. Interspersed through them. No kid with special needs should be sitting next to another kid with special needs.

And maybe once a week, there's a seating rotation. Something to ensure that everyone sits next to everyone else, at some point during the length of the class.

And it needs to be a whole semester long. Not just a special all-school rally, one afternoon, in the gymnasium. These kids need to be forced together in a classroom every single day for a whole semester so they really get to experience each other on a personal level.

Sort of like Partners in Policymaking is teaching me to be more aware and accepting. Because it's not necessarily my fault I don't know how to talk to the woman in the wheelchair with such several cerebral palsy that she constantly makes odd body movements and is almost impossible to understand when she talks. I've just never in my whole life been in such close proximity to people with those kind of disabilities. At least not regularly, and often enough to get used to them.

I mean, I'm going to forgive myself for my uneasiness. I think it's only natural to be uneasy around the unfamiliar. But I'm working on it. Every time I see her, I'm a little more comfortable with her.

It makes me wonder how different I'd be, if I'd grown up personally knowing some people with disabilities like her.

Which leads me to wonder how different our whole world would be, if everyone did.

The RIGHT Things to Say to Parents of Special Needs Kids

2011-11-04T09:06:00.000-05:00

I was volunteering over at Aliza's school the other day during lunch, and I noticed that the special needs kids all sit together at one table. There are a lot of deaf/hard of hearing kids and they were all signing to each other.

One girl was in a wheelchair. She sat by herself for quite awhile. There were other special needs kids at the table, but not right next to her.

After only two months, Partners in Policymaking has already changed how I see situations like this. That girl in the wheelchair should have been sitting at one of the tables with all the "regular" kids. Why should she have to sit at a table almost all alone? Why couldn't she be pushed over to one of the other tables, where she might have a fighting chance at communicating with the typical kids? And where the typical kids could get to know her?

This is exactly why the typical public doesn't know what to do or say around people with disabilities. Because they've been segregated.

I've been thinking lately about how people (including myself before being a special needs parent,) act around people with disabilities. What they say and how they behave.

There have been numerous blogs, articles, and Facebook statuses about what NOT to say to parents of kids with special needs. Those sometimes painful comments made by usually kind-hearted and well-meaning friends and family and acquaintances. You know the ones I'm taking about:

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I don't know how you do it! I could never do all that you do!

(As if you'd just return your own child to the hospital, if he or she had some special needs. There are no takebacks. None of us is doing all that we can for our kids because we are special.)

It could be worse, he/she could have ______________ .

(fill in the blank with whatever specific special need the child does not have.)

God won't give you more than you can handle.

(So God doesn't think much of your parenting skills, then huh, since he only gave you neurotypical children? I know that is smart-alecky, and I'd never say that. There just is no way to respond to that, because to me it feels like you're saying "buck up, you lazy bum.")

All he/she needs is a good spanking.
(No one has actually ever said this to me, but I know it's a common one. Some people think children with behavior problems are just lacking the appropriate discipline.
You cannot punish away a disability.)

and my personal favorite.....

You are a saint!

(Right! That's me!)

(ok those who know me personally, you can stop laughing now. I mean it. Now. It's not THAT funny.)

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I know from personal experience that these phrases don't make most of us feel better. I understand where you're coming from, though. I know people are just trying to be nice and friendly and supportive. 10 years ago I'd probably have called myself a saint.

But now that I have some experience as a special needs mom, I'm going to do a little public service. I'm going to provide a list of things that are not only Okay, but in fact are Fabulous, to say to a parent of special needs kids (or to their children).

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"How's the family?"

(It's very simple. Ask how things are going, and then take the time to listen to what I tell you. Ask questions. It's better to ask than not to ask, and risk me thinking you don't really give a crap.)

"I'd love to get the kids together for a playdate sometime."

(And then actually try to make that work. It's not easy to fit in around our therapy schedule, but if you make the effort, I'll be so very appreciative.)

"__________ (insert child's name here) did so well today while we were together! He/She did _________(insert examples of the things the child said or did that show progress). And it was great to see him/her!"
(I love when you notice my kids' progress. It shows that you pay attention to them and are aware. I think sometimes you're afraid to notice the good things because it might amplify the bad or the "different". Let me tell you, the bad/different is already amplified to me, 24/7, you can't make that any worse by pointing out the positives.)

"Hello, (insert child's name here). How are you doing today? Are you having fun? It's so good to see you -- how about a high five?"

(Don't be scared of him. Actually talk to the kid. He may not respond appropriately. He may not respond at all. Don't that let disuade you, talk to him anyway.)

(And if he/she does respond appropriately, pounce on that with more attention and praise.)

It's pretty simple really. Just don't ignore us. Having children with a disability really shows you who your REAL friends are. I'm fortunate to have some really, really good ones, as well as a close, supportive family. In fact, this list of GOOD things to say is from real life - these are things my own friends and family have said or done at one point or another.

If you are cringing because you recall yourself saying the examples of what NOT to say..... it's okay. Don't beat yourself up. I understand the sentiment is more important than the words themselves, and that your hearts are in the right place.

But I also think that people don't say the right thing because they don't know what the right thing is. People with disabilities have been isolated and segregated most of our lives. Most of us just don't have experience in communicating and socializing with people who don't behave in ways we think are "normal." I want to help bring us all together.

It's pretty simple. Just

1. ask questions,
2. talk to us and to the kids,
3. and point out the GOOD!

Halloween Thoughts

2011-11-02T09:44:00.000-05:00

Judging from the joyful posts and comments I saw on Facebook, it seems like Halloween is a very popular holiday with the disabilities crowd. Everyone seemed thrilled with how well their kids handled the dressing up and trick-or-treating.

I guess putting on a costume and pretending to be someone unique and special and very different is a great equalizer. Wait, don't people with disabilities deal with being unique and special and different every day?

Maybe that's why they're so good at doing Halloween.

Like last year, Zack and AJ had a terrific time.

One thing that hasn't changed from last year is the lack of enthusiasm for candy. Neither of our boys likes it. No M&Ms, no KitKats, no Skittles, no Milk Duds. (We are actually thankful that they don't like candy, considering how much they also don't like to brush their teeth.)

They get candy anyway, and we manage to find ways to get rid of it. Usually by way of my mouth.

One of our neighbors, though, planned ahead for our anti-candy guys. She put aside the candy when she saw us coming, and got out a special Halloween treat for Zack and AJ.

How completely lucky and blessed are we? SO very much.

Thank you so much, Sada, for all that you do to make our boys feel comfortable and included.

The Ten Commandments for Parents of Kids with Special Needs

2011-10-30T08:21:00.000-05:00

I love when I get a new follower (yes, I notice these things...)! I was checking out her blog about her special needs son, who about knocked me out of my computer chair with how gorgeous he is. Go see for yourself!

She posted this list, that I can't believe I've never seen in all my special needs-internet-surfing. Nothing on this list is earth-shattering. Many of us do a pretty good job with many of these, 9 days out of 10. But on that one day we don't, it's good to have this reminder.

The Ten Commandments for Parents of Kids with Special Needs

1. Take one day at a time, and take that day positively. You don’t have control over the future, but you do have control over today.

2. Never underestimate your child’s potential. Allow him, encourage him, expect him to develop to the best of his abilities.

3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.

4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.

5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.

6. Answer only to your conscience: then you’ll be able to answer to your child. You need not justify your actions to your friends or the public.

7. Be honest with your feelings. You can’t be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.

8. Be kind to yourself. Don’t focus continually on what needs to be done. Remember to look at what you have accomplished.

9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.

10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.

When I Googled this, I found numerous examples of this list on the internet. Having no way to tell which was the original author, I'll cite the first example that showed up on the results list here.

Hoop Dreams

2011-10-29T10:39:00.000-05:00

Maybe I'm still watching Little Einsteins butr as long as I hold this basketball, I give my daddy hope that one day I'll have a shot at the NBA.

For the Love of Coffee

2011-10-28T10:12:00.001-05:00

You don't know how much is enough until you know how much is too much.

I'm pretty sure we're on the placebo.

2011-10-26T10:49:00.002-05:00

We had our third clinic visit this past Monday and four weeks into the trial, we still don't see many changes. They are both talking a little bit more, but there are still huge anxiety issues with both boys. And when we told the doctor that, she said well, maybe they are on the placebo, or a very low dose.

Which made me think that SHE expected to see some changes by now, too.

We have the last two appointments all scheduled, the last of which is in mid-December, and she said that then we can get them into the extention and then we'll KNOW they are on the drug and we can see what dosage will work for them.

Which makes me think she wants us to definitely do the extension.

This is Dr. Elizabeth Berry-Kravis, by the way, a world-renowned Fragile X pediatric neurologist, and a superstar in the Fragile X community. If she wants us to try the extension, we are going to try the extension.

If she told me it might help for me to jump through a hoop of fire, I'd probably try it.

We have a nice long break now before our next clinic visit. We don't have to go back to Chicago for a month. So we'll spend this month trying to stay in a comfortable, predictable, routine of school, therapy, Little Einsteins, and occasional trips to the mall and Target. We'll try to keep the anxiety level as low as possible.

We'll keep taking our trial meds, and we'll keep hoping for great things.

This past weekend in Chicago we tried to make it into a family mini-vacation.

We decided a couple of weeks ago that we wanted to take the kids to the Shedd Aquarium. I emailed them and explained why we were going to be in town, told them about Fragile X and autism and how it affects the boys, and asked if they had any ideas or suggestions of ways we could make this a successful, fun outing for the kids. Their reply was basically a form email they send to anyone who asks about how to make a trip to the Shedd successful and fun. I was kind of disappointed in that.

But we got there around 20 minutes before it opened, and were the third family in line. By the time it opened, there were probably 10 families in line behind us.

Well, I waited in line, while Mark and the kids bounced, skipped, jumped, and ran around in circles.

"We know it cost $147 for all of us to come in here, but we're tired of the aquarium, can we go back to the hotel and watch videos now?

And the Shedd Aquarium was a very positive experience for all of us. For the first hour or so it wasn't crowded at all, so we could kind of let the boys run around and play on benches and even lay on the floor a little, if they wanted to. They even showed some interest in some of the exhibits. AJ and Aliza watched the Alligator snapping turtle with awe. Heck, so did I.

I didn't take this one - it's from here.

Being regulars at the Minnesota Zoo, we are well acquainted with dolphins but we aren't used to seeing Belugas, and thought they were fascinating.

We stopped for lunch and played with the iPad, and then we took a big leap out of our comfort zone, and took the kids to see "Dora and Diego's 4D Adventure Catch that Robot Butterfly!"

You know what 4D is, right? It means you will feel and smell the movie as well as having it appear to jump off the screen and into your lap.

We could smell the rainforest. The chairs rumbled and we got wet and windblown. It was all a bit much for AJ and he started to cry just a few minutes into the show, so he and I left and waited outside for the others.

It was one too many "D"s for him, I guess.

After we left the aquarium it occurred to me that the biggest and greatest American Girl store in the whole world is in downtown Chicago, just a couple of miles from where we were at that very moment. I couldn't resist it. I talked Mark into letting Aliza and I spend a little time there.

She floated through that store on a cloud. Number nine, I think.

Then later in the afternoon we took the kids back to the hotel pool, where they just so happen to have a couple of flatscreen TVs mounted on the wall, that just so happened to have the Vikings/Packers football game on them. There was no one else at the pool. So for a little while, I got to kick back in the jacuzzi and watch football. Mark said "don't get used to this."

I said, "Too late. I'm used to it."

I'm pricing jacuzzis on the internet right now.

Our Ongoing Travels

2011-10-22T20:45:00.000-05:00

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.

A Side Effect of STX209?

2011-10-20T13:38:00.003-05:00

Could a penchant for women's clothing be a side effect to the trial medication? Zack has developed quite an attachment to his sister's pink butterfly shirt.

(I'm kidding of course. Zack has always had a weird attachment to this shirt. Remember this day at the park, when he was loving all over Aliza because she was wearing it?)

You know what? I'm perfectly fine with him wearing it. Because with the pink butterfly shirt, he's calming sitting under the table. Not screaming. Not biting his brother.

Yesterday the pink butterfly shirt was in the wash, and the two of them were like squirrels on crack. I have no idea what the deal was. I swear they were running up the walls and across the ceiling. So today, if one of them requires a girly shirt to sit down and stay calm, I'm going to be a-okay with that.

Otherwise, the three of them are spending quite a bit of their time off this week (parent-teacher conferences and MEA) doing this.

I don't think we are noticing any positive changes from the trial drug yet. Maybe AJ talks a little bit more. Maybe Zack has been a little bit better in public. If I were looking hard, that's what I'd see so far. But I'd also see that both of them, in particular AJ, have been chewing more. AJ goes through two or three shirts a day because he chews on the sleeves until they are soaked up to the elbows. Chewing is a manifestation of anxiety.

We leave for our third trip to Chicago this weekend.

I don't care what any of you say. I think I look GOOD.

What if? Disabilities thru History and the Lucky Breaks We've Had

2011-10-18T12:21:00.001-05:00

The Partners in Policymaking class this past weekend got me thinking about chances. We have been learning about how people with disabilities have been treated and viewed throughout the history of humans. Disabled people were shut away, if not just killed outright, up until fairly recently.

Up until the 1970s parents of special needs children were routinely told that things were hopeless. They were encouraged and in many cases, instructed to put their children in an asylum.

Where they weren't given any treatment or therapy. They were barely treated as human.

You couldn't really blame them. It was a matter of lack of knowledge. People didn't understand that with the right types of assistance, people with disabilities could be productive members of society. In some cases, they didn't even recognize disabled people as human.

It made me start thinking about how easily it could have been different for us....

Our pediatrician was the first to notice something wasn't quite right with the twins.

She sent us to the Early Childhood area of our school district, and to a neurologist.

Early Childhood began occupational therapy with the boys while they were still babies. They also showed us how to get in touch with a county worker.

The neurologist ran tests that diagnosed the boys with Fragile X Syndrome. He sent us to a genetist and behavior specialist.

The behavior specialist got us started on some medications and sent us to Courage Center for speech and occupational therapy evaluations.

Courage Center evaluated the boys' delays and reported back to us - your boys can learn, they said. We can teach them.

Almost everywhere we went, we did what we were told (the one exception I can think of is the sleep clinic, which is a story I'll tell another time.). We did what we were told, just like parents 40 years ago were tempted to do and often did.

Nobody said, there's nothing we can do-- put them in an asylum.

Not sure what I'd have done if they had.

Temple Grandin's mom didn't do what they told her to. And look at what an amazing, productive person Temple has become. But her mom was a renegade. People thought she was batty.

I'm not so sure I wouldn't have decided that institutionalization was the best thing for my boys, had these trusted professionals told me it was. I like to think I would never have done that. But had I lived and had my family during the time when that was the norm..... I don't know.

I wonder if parents of adults with autism everywhere look at Temple and wonder, what if I'd bucked the system too, and worked with my kid?

We will have fun if it kills us.

2011-10-16T11:34:00.002-05:00

This morning, I forced the boys to come have fun outside in the backyard with me. I raked and they stood by the back door, trying to get back in.

"TV, computer, we miss you...."

"Come on, stop torturing us with all this fresh air and sunshine."

But guys, look at this awesome leaf pile I'm making for you!

Fine. We'll come down, but this better be good.

Okay, you're throwing the leaves up in the air, that's kind of fun....

Come on mom, faster, higher, we're getting bored here!

I'm not sure I'm loving this.

I'd just as soon stomp through it.

Well, that's about all the fun we can handle for today. Can we go back in now and watch Little Einsteins?

Even the cat just wants back in the house.

Not Loving Chicago

2011-10-13T09:17:00.000-05:00

I love how everyone says "oh, I just LOVE Chicago" when I tell them we've been spending a lot of time there.

I guess to LOVE it, you have to see more than the traffic on the expressway, parking lots, hotel rooms, and the medical center.

You also probably have to not travel with two small children with autism. It's hard to enjoy your trip when you are constantly hyper-aware of your two little ones and the dangers all around, that they are completely oblivious to.

The level of hyper-vigilance we have to have with the boys is stressful and exhausting in a way I don't think many people get. I keep thinking about that family in California that was in the news a few weeks ago, whose 8-year-old autistic son was lost in the woods. (I wrote about it here.) He'd been in the care of a foster parent or something (who obviously didn't watch him closely enough and lost him), having been taken away from his parents because they'd tied him to a post in their front yard. They did that because they found themselves facing foreclosure and having to move out of their house quickly, and they had no one to watch their son.

I think I know exactly what they were thinking. That child required the contant, focused attention of one person, 24/7. The person watching him could not also pack and move things out of the house. One entire person had to be 100% watching him and doing nothing else.

They wanted to keep him in the yard, where he could watch them coming and going from the car, and where they could see him. Where he wasn't secluded or isolated, but was safe.

Would it have been okay with Child Protective Services if they'd barricaded him in his bedroom, instead?

My boys require that same level of supervision. I completely understand what would drive you to tie the child to something, just so you could have both hands free to do something else. Let me tell you about the last time I thought about tying up one of the boys.

At the hotel we took the boys down to the lobby for the continental breakfast. It wasn't that busy, but neither of them would sit. My dad held onto AJ while I struggled to get Zack to stay at least next to our table. He laid on the floor. The breakfast was great - bagels, muffins, donuts, scrambled eggs, sausage, coffee, juice, and milk. Some cereal. The only thing there either boy might have eaten is the Fruit Loops, but under these stressful circumstances, in a strange place full of strangers, there was little hope of either of them eating anything.

Incidentally, we don't bring them there to eat. We bring them there to try to get them used to being in a situation of eating in public. We bring them, because they won't learn how to sit down in a restaurant and behave properly, if we keep isolating them.

But it's hard to eat when you never have more than one hand free. AJ's decided he can sit, sort of, if he sits on my lap and I hold him there. I can't butter my bagel. Eggs keep falling off my fork because of AJ's struggling to get loose. I have to time sips of coffee carefully to avoid sloshing it all over myself.

So maybe you can see why, in that hotel lobby, I briefly thought about how nice it would be if I could tie AJ to the chair next to me just for a few seconds, so I could let go of him and butter my bagel.

When we walk out to the car, I have to step up the supervision level because if I'm carrying things and maybe not holding both boys hands, they are just as likely to skip off in a different direction as they are to run toward the car. Imagine walking out to your car in a crowded, busy parking lot with two 2-year-olds. It would be nerve wracking, trying to keep them safe. My two still have the unpredictability and impulsivity of 2-year-olds, only they are faster.

So maybe you can see why I breathe a little sigh of relief, when I can strap them both down in the carseats. They can't get up and run off and I can look the other way without worrying about what they are doing.

During the course of this last trip, AJ mouthed and chewed on things (his shirt, his blanket, a pillow) so much he'd developed sores on both sides of his mouth. One side looks infected. I put Carmex on his lips all weekend, but he's kind of a mess. Zack has been rubbing the collar of his shirt across his bottom lip so much that it bled.

At a rest area/oasis along the highway. Chewing, chewing, always chewing....

Fighting over the computer in the hotel room.

No, we are not seeing a reduction of the anxiety behaviors yet.

Driving is nice because I know the boys are safely belted in and can't get into too much trouble, but driving 8 hours is also quite a drain, so by the time we get back home, it takes a couple of days before I can even begin to think about planning the next trip to Chicago. Maybe after this weekend, I can begin to think about it.

And maybe on the next trip. we'll try to see something besides the hotel and the medical center, and we might develop an appreciation of the sites in Chicago. As of right now, though, I don't LOVE Chicago. I don't even really like it.

Live from Chicago, starring the iPad!

2011-10-11T20:02:00.000-05:00

I was going to be that super cool blogger who blogs from anywhere because I'm so totally mobile now, with my new iPad, but I couldn't figure out how to do it, so my techy-self-esteem imploded and I'm on my parents' computer instead. I could get to Blogger and type up a post but nothing happened when I clicked "Publish", or "Save." It didn't publish or save. I don't know, maybe iPad isn't compatible with Blogger?

Anywho...

We did finally get the iPad, and the kids all love it. And by kids I mean the three of them and me. Mark hasn't had gotten too close to it yet, he hasn't been aggressive enough. At the rate the other four of us are fighting over it, he's going to have to get tough or get used to waiting. Aliza loves Angry Birds, Drawing Book, and the Real Piano HD; the boys love Super Why and PBS Kids; I also love Angry Birds, but along with that, the Twitter and Facebook apps. Yeah, my social networking apps get me through the day.

I downloaded a bunch of free apps for the boys, including ABA Flashcards Emotions, Animals, ABCs, and Actions. They are only slightly interested in that. I also got SeeTouchLearn, but I'm trying to figure out how to set it up with the cards it came with for free, before I buy any.

It is so wonderful to watch them play with it and love it, though. AJ was putting puzzles together on it this afternoon. Not baby puzzles with like 5 huge wooden pieces that fit in so obvious empty spots on a wooden board. Big kid puzzles, with like 6 pieces. Now I had to do the first couple of pieces, but he did most of it himself!

I have been told that iCommunicate is a good app, but I see it's $49.99, so I'm might get that for them and call it a Christmas present. After someone can show it to me and convince me it'll be good.

We are in the midst of our second trip to Chicago for the STX209 trial. We are going to be seasoned, experienced travellers before too much longer. We have been swimming a lot and watching a ton of Little Einsteins. I wish they'd make more of them, there are only like 45 different episodes and I've got them all memorized.

So what apps do your kids with autism love the best? I need suggestions....

I'm the Ref

2011-10-09T09:24:00.001-05:00

The Minnesota River behind my parent's house.

It's been so unseasonably warm and no one dares to complain, because it's a week into October and it's unheard of to be able to wear shorts and flipflops this time of year in Minnesota.

But I have long held the belief that warm, humid weather brings out the worst in my boys' behavior. Every summer they are like little wrestling bear cubs, not aware at all that they are hurting each other until someone is crying. Then the violent lashing out begins, and each of them are angry, and neither seems to realize what brought this on.

I guess in some ways, they fight just like two ordinary 6 year olds would.

When fall starts and it's cooler and leaves fall off the trees, they calm down. Some.

So I'm ready for the days of sun and warmth to taper off, because they have been full of pinching, biting, pushing, and head butting.

And I'm tired of playing referee.

"Dolphin Tale," and why you should go see it.

2011-10-05T19:55:00.000-05:00

Last week, a few days before we were due to leave for our first trip to Chicago to get the boys started on the clinical drug trial, I started having doubts. I was concerned about this long car trip and how the boys would handle it. I was worried about the evaluation and examination before we started the trial - the blood draw, the EKG. This was all going to be so tough on them. What if it wasn't worth it? What if this drug just doesn't seem to do anything for them?

I really wasn't concerned that it would be harmful. I trust the trial doctor implicitly. She's one of the greatest Fragile X Syndrome doctors in the world.

I wasn't worried about side effects - I was nervous that we were going to spend a fortune making multiple roadtrips to Chicago and wouldn't see any results at all. I was nervous that we'd taken the boys off their anxiety medication for this, put them through the withdrawal and a very tough autumn and start of school, all for nothing - if it didn't work.

Maybe I overthought it a bit.

The afternoon before we were to leave, Aliza and I had some mother-daughter time together, and we went to see the movie"Dolphin Tale." It's about a kid who finds a beached and injured dolphin and ends up helping the marine hospital to care for it. The dolphin loses its tail and a rebel scientist played by Morgan Freeman takes on the challenge of making a prosthetic tail so the dolphin can swim normally again.

It's a true story.

At the end, there are scenes from the real dophin (named "Winter") that inspired the movie, and the many people with disabilities who came from far and wide to see her. This animal, swimming around with its artificial tail, has such spunk and energy and heart. Many, many people with a variety of disabilities found a kindred spirit and inspiration in Winter.

It reminded me that we might have to venture out of our own backyard to find inspiration. We might have to travel.

Winter rejected the first couple of tails Morgan Freeman's character made for her. They just weren't quite right. But he kept going back to the drawing board and trying again.

It reminded me that it's important to keep trying, even if we are faced with roadblocks and rejection.

The look on the faces of these children and adults, some in wheelchairs and some missing limbs, when they got into the water with Winter was absolutely overwhelming for me. They were so awed. They live in worlds where they are different, and not often in a positive way. Winter was so beautiful and graceful and special, and maybe it reminded them that they are beautiful and graceful and special, too.

It reminded me that it's important to reach for the stars.

It was a great movie and you should go see it. Bring some tissues.

It's Not A Competition

2011-10-04T09:51:00.000-05:00

Jocelyn learned to pedal the tricycle this weekend. I pondered for a bit the fact that Zack and AJ haven't mastered that skill yet, and then decided it would be enough if they would just come outside to play without us having to drag them kicking and screaming. On AJ's part I mean that figuratively, but Zack literally screamed the entire time he went walking with Grandpa and daddy. At least we knew exactly where they were. Suffice it to say, the boys did not appreciate the beautiful weather. Who cares about the weather, when all you want to do is watch the Wiggles on You Tube.

(No noticeable changes from the trial meds. Yet.)

Special Needs Siblings

2011-10-01T18:49:00.001-05:00

Today I'm proud to be featured at The Squashed Bologna, an awesome special needs blog. I never miss her weekly feature, Special Needs Sibling Saturdays.

Anyone who reads The Fragile X Files knows how great a big sister Aliza is. Special Needs Sibling Saturdays gave me the opportunity to not only spread more awareness about Fragile X, but to talk about my fabulous daughter.

I'm so touched by what Varda wrote about us, and the title she gave our post - she called it "Fragile Brothers, Strong Sister." How outrageously sweet is that? I love that title!

I don't feel like this post is my best, though. There have been a lot of distractions this week. First of all I started writing the post for SNSS a month ago, and my draft is on the dead computer. I remembered what I'd written, more or less, so I started over, but it felt rushed.

I hope that, despite the PC issues and a nagging headcold, I was able to express my joy and wonder at my sweet Aliza.

The Drug Trial - Your Questions Answered

2011-09-30T10:12:00.000-05:00

I get a lot of questions about the STX209 drug trial, so I'm going to use this platform to try and answer them all.

First off, if you want to read more about the trial itself, the whos, whats, wheres, whens, and hows, you can go to http://www.clinicaltrials.gov/, and search for STX209.

And on a side note, let me just comment on how much the above sentence sucked to type, on a keyboard where the "h" doesn't work. Feel my pain.

1) Do you have to stay in Chicago while the boys take the medicine, or can you go home?

We can go home. This trial involves 5 trips to Chicago in 4 months, which is easily the most challenging part of it. Eight hours in the car, one way. No matter which way we go, it's a full day in the car. I figure it'll get easier, every time we do it, but it's definitely the hardest part.

2) How long will the boys be taking the meds for the trial?

It looks like it'll go until mid-December. We don't know if they are on the drug or the placebo. The doctors don't know either - as they put it, only the computer knows, right now. At the end, in December, we'll find out whether they were on the actual trial medication, or the placebo, or some combination, resulting in either a high, medium, or low dose. At that point, depending on what kind of results we saw, we can decide whether we want to continue the study and apply for an extension.

3) Do you have to log their behavior after each dose?
I don't specifically have to keep a log, no. They will ask me for updates regularly on how it's going, but they didn't give me any idea what kinds of changes to look for. I suppose they didn't want to put ideas in my head, to keep me as objective as possible, but I already know somewhat what kinds of behavior changes we could see, because I've talked to people whose children have been in earlier phases of this same study.

4) how did the boys do with the evaluation?

They did pretty well. The blood draw was painful, figuratively and literally, just as I imagined it would be, but I bet there's not a drug trial in the world that doesn't require some blood draws. Zack screamed, AJ sobbed, and I managed not to do either of those things.

The EKG I was super worried about and it was really easy - Zack went first, because AJ always wants Zack to go first with everything - and Zack doesn't mind - and he just watched, curiously, as she stuck the monitors on his chest, arms, and legs. AJ watched as well, and then came over and stuck his arm out. he was ready for his stickers too!

The urine sample was the part I was most worried about, actually. They aren't even remotely potty trained. If anything, they are negatively potty trained -- they'll hold it and wait for the pull up to pee, rather than pee without it. So my mom, back in the day, used to be a pediatric nurse. And do you know how they get urine samples from infants? They put a specially shaped bag over the baby's "thing" and then just wait for nature to take its course. And that, my friends, is exactly how we got a urine sample from AJ and Zack. It was so simple.

5) how do the boys swallow the pills?

I bury it in a spoonful of applesauce and they gulp it right down. I'm pretty sure they know it's in there, but most of the time they are cooperative.

6) When do you think you'll start to see some changes?

It's hard to say. I do think this med takes some time to get into a person's system and start to take effect. Since they started on Monday, I had it in my head not to even think about it until Friday. Now that it's Friday, I'm thinking I'm going to try to hold off expecting anything until Monday. But I also know, it might be a couple or few weeks.

I have to get back to fighting with the good computer now. You know, the one that won't start up. have a wonderful day!

STX209 -

2011-09-28T21:01:00.000-05:00

It feels like it's been forever since I had time to post here! And so much has happened!

(BTW, the boys finally succeeded in completely killing our "good" computer. So today I'm on the computer where the "h" doesn't work. So if you see "te" here and there, it's because I missed pasting an "h" there. I can't tell you how much fun it is to have to type Crtl+v instead of"h" over and over and over.)

We did it! Finally. We drove to Chicago, visited Rush University, and started the STX209 clinical drug trial!

We have been wanting to get involved with this trial mainly because it's been shown to help people with Fragile X with social anxiety. In other words, it might help them tolerate a cafeteria. Or a school playground. Or a busy doctor's waiting room. Or just, regular life.h

Well, that and the fact that I like helping out with a drug trial that will help kids and grown ups with Fragile X. I like the idea that my boys are helping further the research, helping make sure this gets through the FDA approval.

I have to say, after anticipating this all summer, giving them that first dose was pretty exciting. Every dose after that one has been exciting. Now, there's a lot of different possible scenarios here -- they get three doses a day and could be getting one of several different combinations of different dosages of the trial med, or the placebo.

I'm not sure what we are expecting. While I have hopes it'll be a kind of "awakening" for them, I'm trying not to assign too many expectations here, partly because I'm not supposed to-- I'm supposed to try and be as impartial and objective as possible -- and partly because I just don't want to be disappointed. I mean, there's still no miracle cure here. They will always be two boys with Fragile X. This isn't going to eradicate their "special needs" status.

I know too, that it could take awhile for the affects of the med to start being noticeable.

But we are watching them closely for signs. Are they getting the actual medication, or the placebo? On the first night on the medication, our second night in the hotel in Chicago, Zack had a hard time falling asleep. He got himself all worked up into a little snit. He screamed and threw pillows on the floor and kicked them. Then he put them back on the the bed, staring at me through tears, saying "good boy." Then he'd throw them all on the floor again. AJ just watched him in a daze. They were both sooooo tired.

"Well, I guess Zack's on the placebo," my dad decided.

What? You think we should give it more time??

Sounds simple, right?

2011-09-23T12:30:00.001-05:00

This morning Zack got up first, and went straight to AJ's room. He opened the door and announced "Hi AJ."

And we heard AJ say back, in his sleepy, first-thing-in-the-morning voice, "Hi Zack."

And even though we kind of wish Zack wouldn't wake AJ up, and even though it was 6:20 AM and Mark and I were pretty tired because we are both fighting off head colds, we looked at each other with huge grins.

Because that was the first time we've heard them greet each other like that.

Guesting

2011-09-23T11:08:00.000-05:00

Today The Fragile X Files is featured on this fun blog called "The Scoop on Poop," as the "Best Scoop of the Week." I'm totally thrilled and honored to have written a guest post for her blog today.

Please go there and see how I answered the question “What is the #1 piece of advice you’d wish someone had told you way back in the beginning that would have made your life easier as a special needs parent?”

It was a challenging question but in the end, I did think of one person who said something that helped me more than any other.....

Plus, it gives me an opportunity to introduce Fragile X Syndrome to a whole new audience! It also makes me think about inviting some of my favorite bloggers to guest post here. Let me know if you are interested.

This weekend we'll be busy getting prepped for the trip to Chicago, to begin the STX209 drug trial. Details about how the trial is going to work coming up tomorrow.

Autism vs. the Autism/Fragile X Combo Pack

2011-09-21T06:05:00.001-05:00

It's such a time of change around here. I feel like I just go with the flow every day, and I want to be flexible like that but I feel so out of control. I'm tired of being reactive. Just one day, I'd like to not have to react to something unexpected.

We are still getting used to the idea that our ABA therapy is probably coming to an end.

Three and a half years ago, when we started this program, Nancy was full of sales pitches that included strong claims of how this therapy could "cure" them. Alright, she didn't say the word "cure." But she bragged quite a bit about statistics of kids who went through their therapy program and then went to school not needing any aides or support of any kind. Kids who were able to be mainstreamed in the typical classroom, keeping up with their peers and their studies. Showing no signs of autism.

And while I try to have high expectations, I knew this was not going to be the case with us. And I tried to tell her that. The autism/Fragile X combination was going to make "graduating" from the program a lot harder. Her statistics didn't include kids with Fragile X. I also suspected that ABA therapy would be very good for the boys, though, and that while they most likely wouldn't be entering school without aides, it would definitely help them.

Still, it's sad to me that they will be quitting the program, rather than graduating from it. It's the same way we ended things at Courage Center - our insurance stopped wanting to pay for it, because they weren't making enough progress - so we started the ABA program. This time it's not because insurance doesn't want to pay for it, but history is repeating itself - therapy is ending because they (well, only Zack, really) aren't making enough progress.

My poor little Zack. He is getting used to the full school days, though. It was a slow transition because he was sick a couple of days and had to stay home. Actually everyone's been sick. I'm the only member of this household who hasn't been on antibiotics in the last month. Well, me and the cat.

September has been such a busy, scattered month. I hope things settle down soon.

Me Being Political - PIP

2011-09-18T20:59:00.002-05:00

I started Partners in Policymaking this weekend. Every state but Vermont does a PIP class and it started right here in Minnesota, 25 years ago.

It's a government program that trains us to fight for government policies for people with disabilities. In other words, the government is teaching me how to fight the government. How awesome is that?

Classes are once a month on a Friday and Saturday, for this whole school year, ending with a big graduation in May. In March our class will go to the capitol for Disability Day, which I did this past spring, but I felt like a fish who'd flopped out of my little glass bowl. Maybe going with my PIP class this coming year will make it less awkward.

Anyway, Friday, the very first day, the first thing they did was shock us into realizing how badly people are needed to work to promote legislation for people with disabilities.

You know how when there's a story on the news about a child or a person with a disability being abused or injured or killed, and you tend to turn away or turn it off altogether, because it is just too disturbing and you'd rather not hear it? Imagine if you had to sit through story after story after story for several hours. My stomach turned over about six times.

There was a detailed and lengthy account of how people with disabilities have been treated and viewed throughout history. Horrifying stories of torture, abuse, neglect, exploitation, misunderstanding, and disrespect. Nearly every example from history was followed by a recent news story showing us how the very same types of treatment and abuse and misunderstanding occur today.

So we were all emotionally smacked upside the head.

Suffice it to say, it wasn't light entertainment.

It's going to be grueling. But I have a sneaking suspicion this may turn out to be the most valuable schooling I've ever gotten.

Cousins Taking a Nap

2011-09-18T07:43:00.000-05:00

In the News - Autistic Boy Lost in the Woods

2011-09-14T10:57:00.001-05:00

Did you see this news story out of California, about the 8 year old boy with autism who was found after being lost in the forest overnight, during a thunderstorm? He had been removed from his parents' custody after he was found tied to a post with a nylon rope. Sounds horrifying, if you don't have children with autism.

Sounds like too much of a real possibility, if you do.

This story breaks my heart. I want to say I'd never tie my kid up to something, but who knows.... I've done a lot of things I said I'd never do, and it doesn't sound like his parents put him in danger -- on the contrary, they were protecting him. But that is something that a parent of a neurotypical child might not understand.

The Department of Children and Family Services should have understood that, though.

To think that the Dept. of Children and Family Services, local law enforcement, and the Superior Court all saw what this famiily was doing as a danger to the child.... now of course I don't know the details of this case. For all I know, the media totally misconstrued this story.

All I know for sure is, I can see the possibility of us being in this situation, and it scares the bejesus out of me. Because my boys are runners.

Often people don't understand what we, parents of autistic children, have to do to protect our children from the world and from themselves. If I didn't have a fenced in backyard, I could never, ever open the door and just let my sons run outside. Not unless I was no more than an arm's length away from them. Because they will run into the street and keep on going.

Did no one understand that they were just trying to keep him safe? Was he tied up too tight? Was he crying? Was there another reason for them to take him from the home? I hope it was fully investigated. As much as I don't like to think the parents WERE doing something they shouldn't have.... I hope the three entities responsible for making the decision to remove this boy from his parents had darn good reasons.

Because I bet being removed from his home and his parents caused him unbelieveable anxiety and fear. I bet it made his behaviors worse. Which in turn they'll probably blame on the parents, somehow.

It just scares me. The lack of comprehension on the part of the authorities.

"He was looking for us," his dad said, of why he ran away.

He probably was. Nobody would know better what his reasonings were better than his parents. And the thought of one or both of my sons being taken from me because of someone not understanding the things we sometimes find ourselves doing, to protect them from the very kind of misunderstanding that probably occurred here.... and then running away to find me.....

I know my boys are "momma's boys." They are attached to me. They are happier and more relaxed when they are with me.

I can imagine the terror these parents felt, knowing their boy was out there somewhere, lost and afraid and looking for them.

And I think if this were me, at this point, I'd have an unbearable amount of rage inside me at Child protective services. I don't know how they do it. I don't know how they don't explode with anger at the system that was supposed to protect this kid, and in fact just ended up putting him in even more danger.

Speed Bumps

2011-09-13T09:28:00.001-05:00

Apparently I am not meant to do anything but stay home with children. All three should be suffering through full days of school now, but the first couple of weeks have been full of speed bumps.

All three went to school on the first day and evidently dipped their hands and heads right into the giant vat of germs and bacteria that I think every school must have. Aliza was sick a day and a half last week. This week, Zack has stayed home Monday and Tuesday.

AJ has been doing splendidly. He loves being there and they are thrilled will how much more he is talking.

This is also the first time the boys have had a meal at school, and neither one is really eating lunch. I am trying to decide at what point I intervene. At what point do I say, "Let them eat in the autism room - so they will at least eat something!?" By the end of the week they were munching on a little cereal in the cafeteria, but still not touching their sandwiches.

That's another thing -- peanut butter and jelly sandwiches are about all I can make them for lunch. There's nothing else they eat that I could easily pack in a bag and let sit all morning. I guess it's going to be PBJs for them every single day.

Zack has been sad. On Friday, the notes from school say "Today's Zack's preferred activity was to sit in a chair in the choice time area and look out the window. It was SO unusual, he sat almost completely still. A few separate occasions he started to cry quietly and looked very homesick. He required lots of redirection to distract him from feeling the blues today."

My poor boy. He's having a very tough time adjusting to the long days.

We have a ton more language than we did a year ago, but they're not exactly conversational. It would be nice if, when they are sick, they could give me a couple of specifics.

In happier news, this past weekend we took the boys to the Burnsville Firemuster parade - see here for details from last year's parade adventure. They are way, way too big for the stroller, but they feel secure sitting in it, so I don't dare get rid of it.

Almost smacked Grandma with that flag.

They don't look too thrilled to be there, but they didn't struggle to get away and repeatedly say "go home?" so I consider it a huge step forward!

This year they actually sat and watched the whole thing. Well, they watched most of it. One other great benefit of this stroller is the way you can hide from the world in it.

Aliza got to scratch off something on her bucket list ("Things I Want to Do Before Middle School"). She walked in the parade with her dance team.

Hoping Zack's nose clears up enough for him to go to school tomorrow..... today he's going to be watching a lot of Little Einsteins and doing puzzles and fun folders.

It's been a bloggy kind of day

2011-09-10T20:35:00.001-05:00

I hobnobbed with some very cool bloggers today at the Minnesota Bloggers Conference. It was informative, entertaining, enlightening, and FREE! Minnesota has a wonderful and large blogging community. And I, of course, jumped at the opportunity to spread awareness and wore my "Got Fragile X?" t-shirt (Mark's idea).

I want to thank all those that put it on (by their Twitter handles):

@bridgetmonroe
@suzimn
@jlbraaten
@whereitblooms
@marketingmama

And the sponsors of the event:

TopRank Online Marketing
KARE 11
Allina Hospitals and Clinics

I saw some of my lovely bloggy friends, and met some new ones. I learned about how to make sure my giveaways and reviews align with current FTC rules (if I ever have any giveaways or sponsors, I'll be ready). I found out there are lots of places I could go to, if I ever decide to publish my blog as a book.

It was interesting to me, though, how many people take their blogging very, very seriously. It's not like Blogger sends me a biweekly paycheck. I don't make a dime (nope -- that BlogHer ad you see over there hasn't paid me anything, yet.). And those bloggers who do make money - they invest a huge portion of their time and energy on their blogs - usually only to make enough for "beer money."

Not that there is anything wrong with that. More power to them, I say. They are having fun and have a fulfilling hobby and pasttime, that actually pays them a little.

This is also not to say that if something doesn't pay well, it's not important.

Wow, look at me, backpeddling.

I guess I just don't blog for the same reasons most people do. It's not that I'll NEVER have a sponsor or do a giveaway (actually I've been pondering a giveaway....). I'm just trying to make myself remember why I started doing this in the first place.

It's easy to get caught up in the blogging game. It's easy to get all competitive, scrambling and scratching for all the followers and page views you can possibly get. It's fun to feel popular.

But the point here, at least for The Fragile X Files, is Fragile X. Education, support, awareness, and friendship.

I hope my bloggy friends take the time to sit back and remember why they write.

Dear Target:

2011-09-07T20:28:00.000-05:00

I love to shop at your stores. My kiddos love it too.

Did you know there are a lot of autistic people in this world? 1 out of 110 children. And that number seems to grow every time they do another study.

Two of my three kids have autism (and actually, more importantly, Fragile X Syndrome. But for the sake of this letter I'll keep the references to autism).

I'm at Target with my kids at least once a week (and much more often, in the summer).

For the most part your stores are lovely. Quiet, wide aisles, stocked shelves, and every store looks just like another. Perfect for fulfilling our need for same-ness and predictability.

But you have GOT to get rid of those insanely loud hand dryers.

(Mall of America, the same goes for you.)

Sincerely and respectfully yours,
Bonnie

Last Hurrah

2011-09-06T11:05:00.002-05:00

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!

Two days and counting....

2011-09-03T21:37:00.002-05:00

Adjoining desks.... how cute is that?

This is in their 1st grade classroom, not in the autism room. So I'm not sure how much time they'll actually spend here, but I love the optimism shown by giving them little desks right in there with the rest of the class.

A Great Mystery of Life

2011-09-01T07:54:00.000-05:00

Aliza wanted to make cookies the other day. And I was recently reminded that she won't always be a little girl who wants to hang out with me. The day may come when I'm not cool (I know, I can't imagine that either) and she won't want anything to do with me. So of course I dropped the important stuff I was doing (playing Bubble Spinner on Facebook) and started to gather ingredients.

The thing is, you know who did all the work of making cookies? Who slaved over a hot oven? And who cleaned the mess?

And who ate the most cookie dough?

That would be me.

Can someone explain to me why raw cookie dough tastes so much better than the finished, baked cookie (which, while warm, is definitely a close second)?

ABA is a little scary

2011-08-30T07:38:00.000-05:00

With the start of 1st grade next week (and full days of school), we are cutting way back on the boys hours of ABA therapy. Both have been in an ABA program for more than 3 years now.

Did you know ABA therapy can be controversial? I was very nervous about beginning this program, because before I really knew what ABA was, I knew it was sometimes not the right way to go with Fragile X kids. When I started asking around (i.e., emailing the listserv to see who else had been doing ABA with their Fragile X kids) the first thing I got was a link to an article warning against the ways straight ABA therapy (intended for kids with autism, not with Fragile X) could be harmful. I had two little 3-year-olds. I didn't want them harmed.

I did want them to cooperate with the activities of daily living though. I wanted them to be able to feed and dress themselves. I wanted them potty trained. I couldn't imagine how they were going to go to school when they couldn't sit still for more than a nanosecond.

Behaviors were out of control. Neither of them could do anything without screaming about it first. I wore earplugs. Literally. Mostly just in the car, but sometimes around the house too. I could still hear, but they muffled the constant screaming quite nicely.

And ABA therapy has been a lifesaver around here. Zack and AJ have learned, among other things, how to communicate without screaming. It's wonderful. And I don't regret a second of the undoubtably 1000's of hours of one on one therapy we've put in.

But it might be time to move on. To a more classroom-oriented therapy. With other kids. In a group. Socially.

I just stumbled upon this blog called Reward and Consent, that discusses ABA therapy, its history and significance and the pros and cons. I love it. I'm going to follow this blog carefully, because three years later, I still feel like I need to stay on top of the ABA program and make sure it's not "harmful." It certainly wasn't, for us. But that doesn't mean each parent shouldn't pay close attention to exactly what kind of program is being used on their kids.

Every child is an individual (even if he's an identical twin), who should not be subjected to a cookie cutter therapy program.

Who are all these kids, and why do they keep calling me mom?

2011-08-28T19:48:00.002-05:00

I stopped and looked around myself this weekend and felt some shock and awe. My kids are getting so BIG, right before my eyes. Big as in, they will concievably be taller than me one day. Soon. Probably tomorrow, the way things seem to be flashing before my eyes.

Weren't they babies, like yesterday? And now all of sudden, they are ... people.

The Art of Brushing

2011-08-26T07:21:00.000-05:00

I've taken off Zack's shirt. I wince as I note a couple of small bruises on his back. Looks like they must have hurt. Would have hurt anybody else. But Zack's sensory system doesn't work like other people's. These are new from yesterday, probably from wrestling with his brother. Yet, at no point did he let me know he was hurt. I have no idea if he felt it at all.

I grip the soft, white, plastic, sensory brush in my hand and begin gently brushing down his left arm, while he stands in front of me, watching the Little Einsteins. I start at the shoulder, pressing just hard enough for the bristles to bend, and draw the brush down toward his little hand. He holds his arm out straight for me, but loosely.

He wiggles around a little. He spreads his fingers out though, when I do the palm of his hand. I imagine the brush in my hand is actually a paintbrush, and I need to spread the paint down his arm, evenly in a straight line.

I switch to the right arm. Zack is cooperative. He likes the brushing. I focus on keeping the pressure steady, taking deep breaths myself. The act of brushing is soothing for both of us.

I imagine that all the stress, anxiety, and tension in his body is just under the skin. And by brushing, gently, slowly, deliberately, always in a down motion, I can extract the stress and anxiety. I can release the tension for him. In my mind I see the tension come flowing right out his fingertips, like five long, shiny ribbons.

I brush both Zack's legs while he stands in front of me, tenderly, but also firmly. I begin at the hip and leisurely draw the brush down over the thigh, knee, calf, ankle, and end it over his foot, bringing it just down to ends of his toes.

Zack fidgets a little. He can't help it. He is almost never still. But he's more still for this brushing activity than he is most of the day.

I cover the left leg with my imaginary paintbrush, and then begin with the right leg.

In my mind's eye I see ribbons of stress, laying all over the carpet, in a rainbow of hues. Zack is free of them.

The Escalator Ride

2011-08-24T13:45:00.003-05:00

We went to the mall this morning, just to walk around.

If you go before any stores open, it's nice and quiet and empty. A great place to let little monkeys run around.

After the stores opened, Aliza wanted to look in a little toy store. It's right by some escalators. Which are basically an amusement park ride, as far as AJ is concerned. He did his imitation of a puppy (i.e., whining) and strained toward them, as I held hard to his hand.

Then I decided, what the heck. Stores had only been open for about 10 minutes. There was nobody around.

I told Aliza we were going to ride the escalator. I can see inside the toy store the entire time. So she can stay there and look at toys. I abandoned our stroller at the top of the escalator and took a boy by each hand, and we stepped onto the down escalator.

AJ squealed and laughed, as if we were on the rollercoaster. As we got close to the bottom I warned the boys -

"okay we're almost at the bottom, get ready."

And AJ looked down where the escalator stairs magically flatten out and disappear, and he waved said wistfully "buh- bye, stairs. buh-bye."

We turned around and went right back up. The "up" was just as exciting as the "down."

We rode the escalator ride three times, always watching the stairs disappear, waving and telling them "buh-bye, stairs!"

Seriously, could that kid BE any cuter?

San Diego is the most awesome place to have a meeting

2011-08-22T13:05:00.001-05:00

As I mentioned in this post that was mostly pictures, this past week I had the amazing opportunity to attend one of the Fragile X Patient Advocacy Advisory Board Meetings with Seaside Therapeutics.

They held meetings in Philadelphia and in San Diego and I got to go to the one in San Diego because that's the side of the country Minnesota landed on, and because God knew that that way I'd get a chance to see my cousin who lives in San Diego, who I haven't seen in 10 years.

A representative from each of the local Fragile X groups, called the LINKS groups, was invited to attend. At the meetings we brainstormed for ideas about how to increase awareness of clinical drug trials, and get more people involved in the trials. We also chatted each other up about how to reach the less active community members and make sure they are supported and have the resources they need.

Oh, and I was treated like a VIP.

I was escorted from the airport by someone who insisted on pulling my luggage for me and loading it into the LIMO (not a stretch one or anything, but still...) and then I was driven to the hotel in style, views of the San Diego Bay on the right and city skyline on the left. I don't mind telling you I totally enjoyed that. I would make an excellent super-rich celebrity.

All that was missing was autograph requests.

View from my hotel window.

Another view from hotel window.

The meetings were spellbinding.  Have you ever gone to a movie that was so good, you were afraid to go to the bathroom because you didn't want to miss a crucial part of the plot?

I was afraid to leave to go to the bathroom during these meetings.

I learned a lot about the clinical drug trial we're going to take part in. I thought I knew a lot, but I learned more. Some of the information I got gives me pause, but none of it makes me not want to do the drug trial. Many of the people there had children already taking the trial medication and they had riveting stories to tell of how their children have responded to it. Stories about how their children acted ... like regular kids on this medication.

While they were describing the totally typical, ordinary things their kids are now able to do on this trial medication, things that are like miracles, things we all never thought our kids would do, all I could think was, so when my boys are on it, I can expect to burst into tears of joy at least once a day.

I can't wait.

I met such incredible people from around the country. I met Pat from Seattle, who has six children, three with Fragile X, and who just found out she has FXTAS (an adult onset neurodegenerative disorder).

I met Kelly from Omaha, who has an older son with Fragile X and a younger one who is unaffected because she used an egg donor.

I met Elizabeth from New Mexico, who says she has a very small local Fragile X group. It consists only of her own family members. She doesn't bother to have Fragile X gatherings anymore, because they "already see each other at Thanksgiving."

I met Rose from Wisconsin. Jen from Indiana. Mary from Montana. Donna from Kansas. Laurie from Houston. And Missy and Holly from Illinois (well, I already knew Holly!).

All of us Fragile X family members, plucked from various parts of the country, brought together to represent our hometown and state Fragile X communities, honored and blessed and celebrated.

After the meeting I got to meet up with my darling cousin Andrea.  (She's from the non-Fragile X side of the family.)  Without going into too much detail as I know she wouldn't want me to, she needs a weekend of pampering much more than I did. More than anyone else I know, offhand.  She takes care of a lot of people. Some of them are people who should be taking care of her.

We haven't really known each other since we were kids. And growing up has changed us.  While there are undertones of stress and drama and serious grown-up stuff, she is still definitely the kid I knew and loved.

I'd post the picture of the two of us, but we let her daughter take it, and let me just say this; when a child takes a picture of you, it's not going to be from the best angle. All I can see are double chins. And other double things. Definitely only let tall people take pictures of you.

I hope and pray one day soon she's able to get a weekend away to just play.

Blog Gems - Airing the Archives...

2011-08-21T08:59:00.001-05:00

In between San Diego updates I'm going to do a quick blog hop today - currently sponsored by this blog:

The Squashed Bologna: A Slice of Life in the Sandwich Generation

which I love. Great special needs blog. Very insightful and fun.

Blog Gems was created and begun by Jen from The King and Eye, who says:

"How many posts do you have languishing in your archives? Great posts that will never be dusted off and brought out to breathe again! Maybe you created fabulous content before you had lots of followers, or maybe you have been blogging for years and your current followers haven't seen your older material.

Blog Gems - Air Your Archives is a fortnightly linky list where we will give a prompt and you select a post from your archives that fits the prompt. You do not have to create content for the prompt, unless you want to. All you have to do is copy and paste the url of the post into the linky list. Voila, an old post gets a second shot!"

So this is my Blog Gem for the day. The theme is Endings and Transitions, so I chose the post I wrote about the boys' last day of Kindergarten. Here it is.

Last Day of Kindergarten - Comparing Them to Other Kindergarteners

You stay classy, San Diego

2011-08-20T11:14:00.000-05:00

I am outrageously fortunate.

I mean it's ridiculous, that I got to come to San Diego, stay in a gorgeous hotel, meet and get to know a bunch of other Fragile X moms and dad and grandparents, and gain and share information from Seaside Therapeutics, a company that is working to improve the lives of people with autism, Fragile X, and other neurological disorders.

Did I mention it's gorgeous in San Diego? For about the first 24 hours I was here I couldn't wipe the silly, tickled grin off my face. I can't even wrap my head around the fact that I got to stay in a place where palm trees just grow right in the ground.

Okay I've been in places where palm trees grow right in the ground before. I've been to Texas a few (dozen) times, and I've been to Mexico and the Dominican Republic. They were all exotic vacation paradises.

So I guess, palm trees signify exotic vacation paradises to me. I'm sure it's orchestrated that way. They plant the palms all over the hotel landscapes and along the highways to and from the airport, so those of us from colder climates will feel like we're in paradise. I'm sure it's a conspiracy.

It worked on me.

Ditto for giant cacti. They make a good icon for exotic paradises too.

There are more pictures and plenty more to say, but right now I have to close and get packed up.

To be continued.....

Leaving on a jet plane, and more brushing!

2011-08-18T07:50:00.000-05:00

For the next couple of days, I'm going to give up my at-home juggling act and turn it over to my parents and Mark, while I will be in sunny San Diego, participating in a patient advisory panel for Seaside Therapeutics, the company that is working on several medications that will help Fragile x patients.

Then after the panel meetings, I get to visit with a cousin I haven't seen since she was pregnant with her daughter. Who is almost 10 now.

Aliza is beside herself with anxiety over my leaving. How do moms with attached children ever get away at all? She sobbed last night as if I were planning a six-month sabbatical. Instead of a quick 48 hour trip.

But, about the brushing - it's going really, really well. I tried it a few years ago and it didn't seem to make any difference, and I really got the feeling I was bugging him, so I quit. But now - now it rocks!

I've got to make sure my parents and Mark know to keep the brushing up with Zack, because he's loving it. I'm not sure whether it's calming for him - there's still a lot of screaming and pinching - but it's definitely making him happier. I finished brushing down his arms and legs this morning while getting him dressed, and he picked up the brush (carefully by the sides, so his fingers weren't touching the bristles) and handed it to me.

I asked him "Do you want me to brush you some more?" "Yeah," he said.

So, we'll do whatever makes him feel better.

AJ had his own little meltdown a couple of nights ago, I think resulting from the combination of not getting his anxiety meds anymore, and the emerging 6-year molars. I'm going to have my folks give him some Motrin. He gnaws on his fingers and/or a chewy all day long. With all that stuff in his mouth he can't talk clearly, and if he can't talk clearly he can't very well respond to speech therapy, so they were trying to get him to at least get his fingers out of his mouth, and he just couldn't take the pressure. He burst into crocodile tears.

Once he sat down with mom and watched his favorite Little Einsteins video he was giggly and fine.

AJ is my delicate little flower. They are going to have to be very gentle with him while I'm gone. And keep up the Motrin.

Therapy, sociability, and aggression, oh my!

2011-08-16T07:23:00.004-05:00

At the Fragile X picnic this past weekend, I noticed that my friend's son Timothy, almost 6 years old with Fragile X, was so social. He played catch with the other kids. Just jumped right in and hung out with them. He was such a little joiner!

Zack and AJ, on the other hand, either took off for the park where they could play alone, or stayed glued to their DVD player ignoring everyone and everything going on around them. When Aliza and the other kids started blowing bubbles, AJ did go over to check that out briefly, but he went right back to the movie.

Now, I brought the DVD player specifically because I knew it would keep them busy and entertained. I knew I would be pretty busy greeting everyone and making sure everyone felt welcome and was having fun.   I knew that if they had their movies, it would be easier for my mom and dad to keep track of them.

But I so wished they would have played with the other Fragile X and nonFragile X kids, like Timothy did.

My boys' daily routine is different than Timothy's.  Zack and AJ get around 6 hours a day of ABA therapy, one on one. Timothy has 4 hours a day of classroom style therapy and spends some time in daycare.

It could also be the fact that Zack and AJ are twins, and have each other to play with and lean on.  They night not need other people as much as a singleton might.

I know, I know. I shouldn't compare them.

All I know for sure is, I was jealous that Timothy was out there, participating a little bit in some fun with other kids, and my boys didn't even appear to notice that other kids were there.

Zack is having such a hard time lately. His aggressive behaviors are really intense. We are really feeling the loss of the Tegretol. I am worried about him starting school with this level of anxiety. I wish there was something else I could give him right now, but we can't add any meds if we want to be a part of the clinical trial for Arbaclofen.

I think today I'll try brushing him. I haven't done that in awhile.

Brushing is part of a sensory diet, with a plastic, surgical-type brush that looks like this. --

You rub the brush methodically and briskly over the arms, legs, and back. It is supposed to help them stay calm and focused. For more information on brushing, click here.

Our Fragile X Picnic

2011-08-14T08:11:00.002-05:00

When I got up yesterday and saw that it was raining, my first feeling was one of indignance. How dare it rain today - the day of our Minnesota Fragile X picnic!?

I didn't worry about it for long. Because there's no better group than the Fragile X families to handle unexpected surprises, like rain during a picnic. I kept the faith that everything would be fine.

And sure enough, by picnic time, the skies had dried up and the sun smiled down on us.

I was distracted with getting to know people and didn't get around to counting, but my dad said he counted twice and and came up with 50 people. Several of us were having a great time greeting old friends, and meeting new ones.

Some were seeing others affected by Fragile X for the first time.

Some came from just down the street. Others drove for hours to get here, coming together to share our experiences with Fragile X. Our joys and pains. Our children, grandchildren, moms and dads, cousins, aunts and uncles. Because Fragile X is an extended family thing. It's not something that just involves children. The effects of Fragile X spiderweb across family trees and generations.

And yet, we are all just regular people. Regular families, coming together to enjoy each other's company and to share food, conversation, and sunshine. Were it not for the banner, labeling us as a group brought together by Fragile X, we could have been any group of people having a picnic. Because that's what we are first - just people. We're not defined by that one little gene, yet we are drawn together by it.

Online friendships can be so enlightening and valuable, but there's nothing like meeting those virtual friends in the real grass, trees, clouds, rain, and sunshine world. It's the reason the International Fragile X Conferences are so popular.

We don't have to go that far to find Fragile X friends, though.

"Friendship is born at that moment when one person says to another: "What! You too? I thought I was the only one."

~C.S. Lewis

Summer Fun Photos!

2011-08-12T07:50:00.001-05:00

Summer Fun Photos linkup!

Over @ Things I Can't Say

There are prizes to be awarded in this link up, but I'm not sure what they are. I'm trying to save up for an ipad, so all I want is cash. Cold, hard cash. If the kids are insanely well behaved for the entire rest of the summer, I might let them see it once or twice. But it's going to be MY ipad, because they are in the process of destroying my laptop.

Anyway, here's our fun photos of summer 2011........

The bunny ears comedy routine is mostly lost on my boys, but Aliza does it anyway.

He can see The Wiggles much better from up here!

Pre-tweens being silly.

Not sure what happened to the "filmstrip" effect on this one.

Monkeys need naps too.

There are ducks down there somewhere.

Wordless Wednesday - School Supply Architecture

2011-08-10T08:34:00.002-05:00

A case of the Augusts, or something else?

2011-08-09T07:27:00.000-05:00

I don't know what it is. It could be a couple of things.

We took the boys off Tegretol. We had to, because we want to participate in a clinical trial for Arbaclofen, a medication that I've read is having tremendously positive effects on Fragile X kids. I think this is phase 3. It's very close to the end of the trial (obviously, or they wouldn't be allowing testing on children.)

And we can't take part in the trial if they are on Tegretol. We weaned them slowly, on a schedule created by our doctor.

They were taking Tegretol for the pinching and the biting. And there still was some pinching and biting, so I decided the medication wasn't making that much of a difference, and it would be no big deal to take them off of it.

But now there's SO MUCH MORE pinching and biting.

It might not just be the medication change, though, because it seems like August is like this every year. Weeks and weeks of hot, humid weather does bad things to their sensory systems. Staying in air conditioning doesn't help because they need to be out and about where they can release their excess energy.

This is why we swim so much this time of year. A cool pool seems to offer them some relief.

Arbaclofen is supposed to help with social anxiety. Which I think is one of the reasons for the aggression. So hopefully the new, trial medication will help with the pinching and biting even more than the old medication did.

But the time in between might be tough.

Social Conversation Speech Therapy

2011-08-06T09:05:00.000-05:00

Now that the boys have mastered labeling objects

"what's this?"
"It's a chair."

They are working on using speech in regular conversation. It's called the Social Conversation program. We ask them questions like

"What do you say when someone goes away?"
"Bye."

"What is your cat's name?"
"Lily"

"How does that taste?"
"mmmmm"

And then there's fill-in-the-blank phrases and song lines, like

"head, shoulders knees and -"
"toes"

Some of them they are really good at. Others not so much.

Both boys have learned to say "Hi" when someone comes into the room and says "hi" to them. Then they both have worked on responding to the question "how are you?" with "good."

Zack however has decided that is all just too much idle chitchat. He'd like to cut it down. Now when someone comes into the room and says "hi" to him, he just says "good."

I'll get right in his face and say emphatically "HI, Zack." And he'll give me the quickest nanosecond of eye contact and say "good."

It takes 2 or 3 tries to get him to say "hi" instead of "good."

This morning when I came downstairs I said "Hi Zack."

And Zack, without looking away from You Tube, said "Hi. Good."

Well, that's progress!

The Greatest Wiggles Show on Earth

2011-08-03T14:17:00.002-05:00

Barnum, you ain't got nothing on The Wiggles!

Oh yes, it went well. It went great actually.

Zack and AJ loved the show. Nobody threw up. Nobody had to go for a drive. We had perfect seats -- last row of the balcony, plenty of space to bounce, jump, and dance.

Of course Zack spent the entire concert with his fingers in his ears. (Yes, we've tried to get him to wear headphones or something to muffle noise. He won't wear them.)

By the way, it's okay that I took a bunch of pictures, because Anthony (the blue Wiggle, for the non-Wiggle initiated) announced at the beginning of the show that their movie-and-photo-taking-policy was that anyone could take any photos or movies they like, because The Wiggles have more money than God and really don't care if we never buy another video from them. Or something like that. I may be paraphrasing.

I am absolutely positive nobody had a better time than I did. They only got to see The Wiggles live in concert. I got to see my two little boys who struggle so much every day for the little things others take for granted, enjoy a kids' show as much as any other kid there.

Two times I fought tears as I watched their big brown eyes shine and their faces light into tentative smiles. They were anxious, yes. They were overstimulated. But they overcame it.

I was so worried that they wouldn't perform The Monkey Dance. You know -- AJ's favorite? Imagine our relief and joy when we heard the opening bars.

After The Monkey Dance AJ ran down toward the front of the balcony. I think he wanted to go right onstage and ask them to do it again.

Actually if they could have just alternated between The Monkey Dance and Rockabye Your Bear for about 2 hours, we'd have been in Wiggle Heaven. But truthfully they did do a nice mix of new songs and their traditional classics. The boys could take or leave the new stuff, but they paid attention and bounced for the songs they know so well.

Oh, and this girl right here? On the left? Told me she didn't even like The Wiggles. And look at her dancing!

Of course we did have to take some little breaks and go run around in the lobby area. It wasn't exactly a playground, but it allowed us to escape the lights and noise for a few minutes.

They were rather exhausted by the end of the day. I wonder how many of the kids who attended The Wiggles show yesterday afternoon went straight home and watched a Wiggles video, like we did.

And Summer Rolls On Pt. 2

2011-08-01T08:24:00.000-05:00

It's not unusual to see this much sand on the rug by the back door.

I'm going to have to check and see if there is any left in the sandbox.

It's hard to stay mad, though, when they are this cute.

It's Like Christmas in July

2011-07-31T07:20:00.001-05:00

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!

2011-07-30T08:38:00.001-05:00

(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

2011-07-29T15:51:00.001-05:00

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

2011-07-28T12:42:00.002-05:00

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

2011-07-28T10:58:00.000-05:00

AJ, impersonating a lounge singer.

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