Doritos - They're Not Just for Breakfast Anymore

AJ likes Doritos.  And by "like," I mean if the house were on fire and he only had time to grab one thing, he'd have a bag of Doritos in hand.  When other people go to the store to get "just the staples" they're talking about milk, bread and eggs.  Our staples are milk, bread, and Doritos.

When AJ gets up in the morning and I ask him if he wants his milk, he says simply "chips?"

His fingers and lips are permanently orange tinted, along with most anything he touches.

Yesterday while the boys and I were hanging out in the lobby at church (because they were just making too much of a commotion to be in church), an older gentleman came in carrying a newspaper and a bag from Walgreens.  He went over to the table where AJ was sitting and said "hey" and offered AJ a fist bump.

AJ doesn't really get fist bumps, so he high-fived the guy's fist and said "hi" after I prompted him.

The guy sits down, spreads out his newspaper, while AJ watches him.  Then he pulls a bag of Doritos out of the Walgreens bag.  I was behind AJ but I swear I could see the glow that crossed the table, when his eyes lit up.

He turned and looked to see if I was watching, and then he got up and sidled over toward the guy.

"AJ, sit down please," I said.  And he obeyed.

The gentleman ate his Doritos and read his newspaper, oblivious to AJ's attention.  He was sort of holding the bag in his lap, halfway under the table.

AJ leaned over in his chair to look under the table at the bag the guy seemed to be almost hidng.

Two more times he got up and sneaked his way around the table toward the man.

We had snacks, but no Doritos. I offered AJ some Honeycomb, which he accepted and ate, staring intently at the guy across the table.

That guy had no idea that it was like he was sitting in the middle of an AA meeting, sipping a beer.  Except that we're not going to send AJ to Doritos Anonymous anytime soon.
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By the way.....the lie was #1, as you figured out easily.  I didn't put enough thought into that I guess, it was pretty obvious!  But fun, just the same!

Thin Mints and the Volunteer Queen

The idea of Feel Good Friday (hosted this week by LiaSophiaTomgirl) is to mention five things that made you feel good this past week.  It's a good idea for all of us to be reminded to remember the good.  So here I go.  Feel free to join in on Feel Good Friday, or just check out the other entries!

Things to feel good about today:

1.  Is it just me and my sweet tooth, or are Thin Mints even better than they have been in years past?  What are they putting in those things, anyway?  Why can't I stop eating them?

Is part of the attraction the fact that they are only available for about one month out of the year?

Would it be wrong of me to buy like 500 boxes of Thin Mints and then wait until late summer, and resell them for about $2 more a box?  Would it still be wrong if I did that as a fundraiser for the National Fragile X Foundation?  Come on, who wouldn't love a box of Thin Mints in the middle of August?  I bet I could make a fortune off Ebay.  To send to the NFXF, of course.

2.  I am a volunteer queen lately.  I just can't say no.  Yesterday I volunteered as a judge at the 3rd through 6th grade science fair.  Twice a week I'm at the school libraries doing a variety of things.  Today I decorated a bulletin board to celebrate the birthday of Dr. Seuss.  Who wouldn't love doing that?!

All this volunteering keeps me busier than I like to be, but today at the library at the boys' school I got to see Zack.  He has speech therapy in a room that's right by the library and I had occasion to walk by there a couple of times.  He didn't see me but I snuck a couple of glances in there.  He was doing so great; sitting, paying attention, answering questions, trying to pronounce the words she asked him to.

He was so cute, sitting at that table,working.  I don't know how she could sit next to him and not just wrap him up in a big squeezy hug.  I swear my kids are more adorable when I'm not around them.

3.  This kid who rides the boys' bus, Tyler, who I mentioned in this post -- this week, for the first time all year, he waved at me and said hi, two times.  I've been saying "hi" to that kid daily since September and finally he said "hi" back.  He's not even my kid, and it warms my heart so much that he's finally responding to me!

Well, that's all I got for now.  Three feel good things is going to have to suffice for today.  Because with all this volunteering and Thin Mint eating, I have neglected housekeeping duties all week.  When you've been pulling clean clothes from laundry baskets instead of closets and drawers for three days straight, and dinner dishes are still sitting in the sink, it's time to stop searching online for pictures of Thing 1 and Thing 2 and get cracking.

Two Truths and a Lie

A Blog Carnival (which sounds even more fun than a blog hop, doesn't it?)

Here are three "facts" about me.

Guess in the comments which one is the lie.

1. My family has genealogical records dating back to the time of Jesus Christ.  But no, He is not a direct relation.

 2.  After our wedding reception Mark and I were interviewed on camera, and our interview was used in a promotional CD advertising the Minnesota Zoo as a great place for wedding receptions.

 3.  My blood type is AB-.  Yep, I'm one in a million.  Well, around one in 100, anyway.

Wordless Wednesday; The Snowfall Progression



The calm before the storm.  So much snow had melted, you could actually see some grass!



These are in right order, I think someone wiped off the table here though.

Sunday early evening

Sunday night



And later Sunday night



Monday afternoon

Monday night.  It's finally over.

I Hitched up my Britches

I really like to read blogs by other parents of special needs children. Here's one by a mother raising a child with hearing loss, that I really like:

Big Teeth and Clouds

And in this post, she discusses that universal question asked by everyone when they go through hard times -- "why me?"

I sometimes think that's why God gave me three kids -- so I wouldn't have time to sit around thinking "why me?"  (and Joey @BigTeethandClouds, I don't for ONE SECOND think that's what you do!  That's MY tendency, not yours.  You know I love you!)

Once in awhile I'll think about how ironic it is that when I was younger and I didn't know what life was going to bring (and had never heard the words Fragile X Syndrome), I was a much more depressive, negative, downer of a person.  I was very likely to see everything that happened to me as a bad thing, and often felt like the whole world was against me.

(although on second thought, maybe this wasn't so unusual.  What teenager doesn't think the whole world is against them?  I just continued that beyond the teen years for awhile)

I wasn't actually clinically depressed.  It's just that nobody was as good at brooding to a sad song as I was.  My cup was half empty.  No, it was empty.  I was embarrassingly gloomy.

And basically without cause.  I mean, I had it pretty good as a kid.  Never wanted for anything, had parents who took good care of me and provided for me in every way.  I had nothing really to complain about, I don't know why I was such a Negative Nelly. 

So it's a little ironic to me that now I have children who struggle to accomplish the everyday, ordinary things that I used to completely take for granted.  Like making friends and playing games and going to birthday parties and having a good day at school.  They work so hard so do simple things, and they aren't Gloomy Guses.  They are about as happy as a kid can be.

I sometimes think that there is a wall beyond which, you either are going to fall to pieces or you are going to hitch up your britches and try and deal with things, and my kids put me up against that wall.  As it turned out, I only headed toward negative town when I practically had to create reasons to go there.

Now that things really are a little tough, I am up for the fight.  I didn't fall down and die, I rose to the occasion.  No more living on the dark side.  No more waiting for bad things to happen.  No more cups half empty.

I don't know how I stay positive.  I guess when pressed up against that wall, I went over it.  Or maybe I'm sitting on top of it.  Either way, I didn't let it smush me.

All I Really Need to Know I Learned from My Fragile X Sons

Inspired by the popular essay "All I Really Need to Know I Learned in Kindergarten."

Be careful what you wish for.  ~  Every single developmental milestone is nothing short of a miracle. ~  You cannot underestimate the importance of The Wiggles.  ~  Keep your comfort items nearby and make sure you always have a stash of spares.  ~  Plan ahead for outings, and then be prepared to toss those plans out the car window.  ~  People will follow your lead; if you are calm and friendly, so will they be.  ~  Timing is everything and nothing at the same time.  ~  Playtime is not just for fun and entertainment.  It's an important learning tool.  ~  Sometimes it's better to be late.  Sometimes it's better to be early.  Sometimes it's best not to go at all.  ~  If you can keep from biting people, they are much more likely to want to be your friend.  ~  It's good to be friends with doctors and therapists.  ~  There will be forward steps and there will be backwards steps, but there will always be progress.  It's important to see the marathon, and not each step of the sprint.  ~  No matter how dire-sounding the diagnosis, your child WILL shock you with what he is able to do.  ~  No two children are exactly alike, even if you can't tell them apart.  ~  If it fits in the mouth, it may end up as a chew toy.  ~  Your average public restroom is poorly equipped.  ~  Slap the words "special needs" in front of any product and the price goes up about 100%.  ~  Lack of language does not equal lack of comprehension.  ~  Write everything down.  Things you think you'll never forget, you will.  ~  Sometimes little things like animal crackers and a smile make all the difference.  ~  You will find yourself someday doing something you once said you'd NEVER do.  ~  All of us have baggage.  What matters is whether you let it drag you down, or whether you try and use it to get ahead.  ~  Even the bad things that happen to you, teach you something.  Especially the bad things.  ~  Listen.  No, really.  Stop thinking about what you want to say, and l i s t e n.  ~  Everyone grows up at their own pace, even all the "typical" kids.  ~  You know how much smarter you feel today, than 10 years ago?  Think about how brilliant you'll be in another 10 years, and how ignorant you are today compared to that.  ~  If something gets torn to shreds, it just means it was loved to pieces.  ~  It's not true, that saying about sticks and stones. Words can hurt.  ~  Housework is overrated.  Housekeepers are not. 

Additions welcome.... What have you learned?

A social life made complicated by aggression

AJ is really comfortable at school, just makes himself at home:

Zack is less comfortable.

Today their teacher called to tell me about a little social situation that has occurred between the boys.  A friend-triangle, if you will.  As any regular follower probably knows now, Zack is more shy and introverted, while AJ is quite outgoing.

Well, my little social butterfly has made a friend -- I'll call him Tyler.  AJ and Tyler sit next to each other on the bus sometimes (not by choice -- they are strapped into seats), and once in awhile during school day, they will hold hands.  (Awwww!)

Well today at rest/quiet time, Tyler patted the mat next to him and looked at AJ, wanting AJ to come lay down next to him.  AJ did, and apparently Zack didn't take too well to it -- he came over and was pretty aggressive toward Tyler, trying to pinch and bite him.  Their teacher said it was heartbreaking, because it was pretty clear Zack was jealous.  Zack had to sit in a chair during rest time (which is not as bad as it sounds.  In the autism room several kids can't lay still and are disruptive, and sit quietly in chairs.) and AJ looked from Zack to Tyler.  He seemed torn.  Their teacher thinks AJ understands that Zack is jealous and frustrated.

Zack had problems on Valentine's Day, too.  He became angry about something and tried to pinch a classmate shortly before the scheduled party in their typical kindergarten classroom.  So AJ and Tyler went to the kindergarten room for the party, and Zack went to his regularly scheduled DAPE - developmentally appropriate physical education - and then just popped in at the end of the party.  I feel bad that Zack had to miss it, but then it sounds like he wouldn't have enjoyed it anyway.

What is causing Zack to be so frustrated lately?  If anyone knows, I'd be interested to hear about it.

Presents They Like

We survived the birthday/Valentine's Day extravaganza.

My heart was a little heavy most of the day, possibly due to the amount of chocolate I dumped all over it.

It's dangerous that the boys' birthday happens to coincide with a chocolate holiday.  But anyway.

AJ opened a Wiggles video and held it high, yelling joyfully "WIGGLES!" 

Zack tried to take it from him, until Aliza and I got him interested in opening his own present.

And happiness abounded because both boys had a new video to trophy (yes, I just verbed this word) around the room, and that's about all they need to reach optimum joy.

Except then we broke out the big guns.  The big teddy.

I have been driving around with this teddy bear in the back of the van for about a month now because I wasn't sure where to hide it in the house.  So I strapped the boys in the van to pick up Aliza at school, and before we left I quick pulled it out of the van and ran inside, depositing Mr. Ted in the lazyboy. 

After returning home, Zack spotted him right away.

Yeah, he likes it.



Thank you to my friend Carolina and her children, who passed on Mr. Ted to Zack!  Zack is quite obsessed with it.  And, Aliza was wondering if you had another name for him?  We don't want to confuse him, if he's used to being called "Paddington" or "Pooh" or "Baloo" or "Corduroy" or "Fozzie" or something.

This morning the boys had a doctor appointment that included "labs."  Luckily the boys don't know that the word "labs" generally means a blood draw, so they were fairly compliant and happy throughout the appointment until the "lab" lady appeared, carrying her little tray of torture.

Much screaming and many tears later the blood draws were just a horrible memory.  And in the mail today, each boy got a musical birthday card from grandma and grandpa, which totally made up for the lab torture.

Just a little blue.

I didn't expect to be a little sad this morning. Yesterday was fine. It's just that today the boys are 6, and we spent so much time teaching them how to answer the question "how old are you?" with "5."

I didn't have any presents wrapped and ready for them because they don't care. We have presents for them. They just weren't ready for first thing this morning. I should have had them ready because maybe then I'd be a little less blue.

But what will make the boys most happy on their birthday is to have nothing be different at all. No fuss, no muss. Just an ordinary day.

Last night I got Valentines ready for their classmates. They couldn't care less about trading Valentines with their class, but I want the other kids to receive Valentines and candy from Zack and AJ. I feel it's important to keep them involved in the activities in the class as much as possible. Aliza helped me get them all together.

Preparing traditions and celebrations around them and behind their backs while they are oblivious is a little sad.

Luckily today is a busy day and I won't have time to dwell on it.  I may need an extra shot of espresso in my Caribou this morning though.

Happy Birthentine's Day

When your birthday is on Valentine's Day, you have to double celebrate.  It is after all, a day of love.  When you have twins born on Valentine's Day, you have to celebrate double time.  That's a lot of love, baby.  A lot of love.

We were graced with a little thaw yesterday so everyone went outside to enjoy the snow, before it turns into muddy slush.


"This is all a little too much for me."



This is the best one, I think.  Might have to turn this one into a header one of these days!



AJ, also known as the guy who doesn't need a mouth full of teeth to gnaw off the tops of all the sippy cups.



Yesterday we continued the tradition we started last year of taking Zack and AJ swimming for their birthday.  They don't like parties, cake, candles, singing, or games.  So we don't do the typical birthday things; they do love swimming, though, so we brought our little fishies back to their most natural habitat.

The sun was a little bright for Zack on the way there, and he doesn't wear sunglasses, but he improvised.

They apparently are going to continue into their 6th year much like their 5th, in showing utter fearlessness of the water.  Both of them prefer to be in up to their chins.



No birthday would be complete without a personal bag of Doritos.





A couple of times AJ was in up to his nostrils.  It didn't bother him, he sputtered a little, let me drag him back to where he could touch the bottom, and then bounced back over to where he barely could touch.

They went swimming and played in the snow on the same day.

More pictures and maybe video later of presents......

Where TVs Go to Die

Zack has to watch his movies on this little Kid Tough DVD player because he's so rough with things, it's the only kind that can withstand the abuse.  He's already broken several portable DVD players (note to grandma & grandpa -- he did not break the one you got him for Christmas, but he was going to -- which is why we got him this one).  We have a broken TV graveyard in our basement:

So, when the electronics failed him, after an appropriate mourning period.....

He put aside the DVD and played with a regular toy!  Granted, it's more of a toddler toy, but he played with it all on his own.

I have adjusted to a lot of new concepts and ideas since the birth of these boys, but one thing I will never stop being amazed at is how hard it is to teach them to play.  The very fact that they have to be taught to play astounds me.  It took a lot of encouragement over many weeks to get Zack to play with this.  So I'm pretty thrilled that he sat down and played with it absolutely with no prompting whatsoever.

Maybe we should unplug all the rest of the TVs and computers in the house and force us all to play with our toys!

It's a twin thing.

Zack and AJ have their routines when they get to school, I'm told.  AJ greets everyone by name enthusiastically, one by one, and then watches out the classroom window at the other students arriving.  Zack hangs up the backpack and then goes off to his own corner to bounce around and assimilate to the classroom.  He smiles a lot and usually greets the teachers, but none of his classmates.

One day this week, AJ had a dentist appointment so he got to school a little late, and Zack rode the bus and arrived at school without his twin.  And there, he came out of his shell a little.

He greeted all the kids by name, and watched out the window the way his brother usually does.  Maybe he was looking for AJ.  But it seems like maybe he was taking on some of his brother's mannerisms and personality traits in his absence.  I have read this is a twin thing - one taking on the other's personality characteristics in his absence.

Each twin has his own personality, obviously, but there often is a dominant twin and a passive twin.  I don't think AJ is in all respects the dominant twin, but he is definitely more personable.   Zack has always been more shy and socially anxious, and perhaps just more inhibited by the autism characteristics.

The last two of their three years of preschool, the twins were in separate classrooms-- both to keep one of them relying on the other too much, and to allow their individual personalities develop.  It worked out really well; Zack was able to blossom in a classroom without his brother, and develop into more of an individual.

Now, in kindergarten, it's not really possible to separate them, as there is only one autism classroom in their elementary school.  So they are back together.

When they were babies, we really thought of Zack as the dominant twin.  Zack was born first, crawled first, and walked first.  He's very determined and strong.  AJ was a much more laid back baby, content to watch his brother pave the way through all the development milestones.  Somewhere along the way, though, AJ's outgoing personality seems to have taken a lead role, and Zack's reluctance in social situations has held him back a bit.

That's why it's so fun to hear that Zack can let his little light shine.  He can totally be outgoing and say hi to the other kids.  And we'll have to try to give him more opportunities to emerge from his more boisterous brother's shadow.

She will make such a great therapist some day!

I don't want to put too many videos out here because I think they are time-consuming to watch, and my hope is for my blog to be something you never, ever get bored with.  And I know a video that drags on and on can get, well, long, and your attention will wander.

But I also think that seeing the boys live is the best way to see them as themselves.  I can write about how they act and how they talk and how they behave for years and not get through to you exactly what they are like in person at all the way a 1-minute video can.

So maybe if I set it up for you it won't be boring; Aliza is "working" with AJ here.  In the beginning she's reading him a Dora book.  Zack is just hanging out with them.  Then the timer goes off, which AJ knows means it's time to get back to work so he runs over to shut it off, and then Aliza gets him to sit down and say something very cute, that Grandpa will love.  *smile*

Check it out.

Aliza also made me very proud this weekend, when she bought an autism awareness necklace with her own money she got for her birthday, and she's wearing it proudly at school today.  Some days I just can't believe how enormously lucky I am to have her!

Our Public Life

We love Sundays around here. It's the only day we get any privacy at our house.  Every other day, the house is full of therapists.

I'm not resentful.  I see the benefits. I don't have to drag the boys here, there, and yonder every day, through wind, snow, rain, freezing temps and icy roads, to get to their therapy. They get to stay right here in the comfort of their own home, while therapists come to them.

I'm just really, really grateful for the one day a week that none of them come over.

It's just.....my home is not my castle.  Well, unless by castle, you mean a place where I can't run around in my ratty old bathrobe, and I have to be aware and on top of things at all times.  Which I guess, most castles are probably like that.  A lot of the areas of a modern day castle are probably full of servants, assistants and random castle-workers, making them public places.  But in a castle I'd have a whole wing of rooms to myself, where I could lounge in my jewel-encrusted bathrobe to my heart's content.  And I'd have hand-maidens to handle all my business, including dealing with the therapists when I just couldn't get out of my bathrobe to go do it myself.  And I'd have court jesters to entertain me.

But I digress.

I would compare our level of privacy here to when you spend a few days in a hotel room, and you leave it for the day, knowing the maid will be in there to clean up after you.  You might be careful not to leave your underwear laying on the floor.  You might take care not to leave snotty kleenex on the counter.  You might rinse your toothpaste out of the sink.

What?  Am I the only one conscious of those things when I stay in a hotel?

We definitely don't leave underwear laying around the house.  Not even in our bedrooms.  Those boys cover every inch of this house, dragging therapists behind them.

It didn't start out this way.  We started having therapists come into our home to work with the boys in April of 2008, and we began at only about 45 minutes a day, a couple of days a week.  We gradually increased the time until we were at our current rate of around 6 hours a day for each of them.  Two three-hour shifts.

At least two therapists are in the house all afternoon, sometimes more.  Some days the lead therapists come in to supervise and shadow the others.  Some days trainers and/or trainees are here to get experience.  There's a family therapy specialist who comes in once in awhile to help with special problems like the sippy cup situation, and potty training.  Three times a year the lead psychologist comes in to review all the boys' progress and determine whether the path we are currently pursuing is appropriate.  That's the one who says the words "mental retardation" to me too many times.

Naturally, we are overjoyed at the great progress they've made in fine and gross motor skills and student skills, and of course most noticably in speech. It's all due to the hours and hours of ABA they've received. Their behavior and communication strides have been instrumental in our ability to be a much more normal, happy family.

Which we totally plan on being today - Sunday - our only therapist-free day.

Feel Good Friday: AJ's a Comedian

Check out the other Feel Good entries at The Girl Next Door Grows Up!

It's fun watching the boys' personalities emerge as they get more and more language.  AJ is quite the little comedian.

There's a dalmatian on the side of the new Fire Station tent we got this week -- just scroll down to the post below this one for pictures -- and when I asked AJ what it was, he said "a cow."  And his therapist and I laughed so much, that now he'll walk up to it randomly throughout the day and he'll make sure I'm looking, and then point at it and say "a cow" and giggle.

He also repeats a lot of what he has been hearing from Dora the Explorer for years.  I always thought one of their first words was going to be "Dora," and I wasn't far off.

Dora episodes are all about repetition -- something little Fragile X and autistic kids often love.  The Map always starts out by saying "I'm the Map" and singing a whole big "I'm the Map" song.  So AJ will say "hi, I'm the Map" randomly throughout the day.  He's mostly just talking to himself but it's so cute.

One day last week he started patting himself on the chest and telling people "Hi, I'm Dora."  And we'd laugh of course, so he takes several opportunities throughout the day to regale us with his humor.  He won't say it for just anyone.  There was a lead therapist here yesterday he doesn't know well, and AJ barely tolerated his presence.  He prefers an audience he's familiar with.  Maybe he wants to be sure he'll get laughs.  Not bad for a starting performer.

Zack is a little tougher to get to know.  His words have come slower, with more space in between them.  I still look at Zack and wonder about the little boy who seems to be locked up inside him most of the time.  But occasionally, when we aren't paying attention, he'll let a little personality trickle out.

The other day we were watching Diego (whom we love nearly as much as Dora).  Zack was laying on the floor on some pillows, being still and watching quietly, and I was taking advantage of the opportunity to lose myself in a book for a bit.  In this episode, Linda the Llama was carrying a bunch of books to the library when a big wind scattered them throughout a field.  "Oh no," Zack said softly.  He's almost 6.  I've never heard him say "oh no" before.

You have to understand that while he has a lot of words in his vocabulary, he is best at repeating things you tell him to say, or answering questions appropriately.  He almost never comes out with a comment without prompting.  It was momentus.  I stared at him in awe.  And he was so into the show, he wasn't even aware he'd done something amazing.

It's so awesome to get these glimpses into their little souls. 

My Stay at Home Uniform

Almost every day, I wear a hoodie and yoga pants.  It's my stay at home mom uniform.  Sometimes I mix it up with jeans and a non-hooded sweatshirt, just to keep my family guessing.

The other day, on a whim, I put on a denim button-down top with my yoga pants.  It's about 15 years old and has some stains.

(Which by the way, isn't yoga pants just a nice, new way of saying stretchy pants or sweatpants?  Wearing sweatpants no longer really implies you are exercising, does it?  It just means you're lazing about.  If you say yoga pants there is an implication you might be doing some yoga at some point today.

By the way, my dad would call all of them easy pants.  I like that).

Anyhew, I'm in my old faded, stained denim top and Aliza looks at me strangely, and says "why are you dressed all fancy?"

So apparently I need to mix it up a little more.

 In other news, I got a great deal on this Fire Station tent and as expected, the three musketeers love it.  Which is good, since it takes up most of the living room.

"I don't need AJ, I'l just push all the buttons and see if the Wiggles video plays."