5000 Kisses

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....

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

... 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

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

Bubbles at Christmastime

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

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

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)

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)

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

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.