Do all special needs parents do this?

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

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

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!

Playing Mad Gab with AJ

"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

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.



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

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

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

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

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

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

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.