Holiday Weekends Suck Sometimes

Oh, the long holiday weekend.

It's supposed to be relaxing, enjoyable family time.  But it takes us out of our routine.  Our beloved, so important daily routine.  It makes the holiday weekends harder to appreciate.

I'm having trouble mustering up excitement for summer, too, as far as that goes.

I realize this is supposed to be special, quality time and I try not to wish it away, but I'm not the only one who doesn't really enjoy it.  The boys struggle all weekend long with no therapy and no school, no matter what else we do.

This morning the boys were all "bus?  bus?"  And Aliza told them "nope, no bus today, boys."

And so they began to tear things apart and look for trouble.

They know I keep stuff they can't have on top of the fridge.  So they were hunting.

In order for holiday weekends, and any time that takes us out of our routine, to go smoothly and happily, we have to have a plan.  An organized, stringent, minute-by minute, detailed strategy of what we are going to do during that time.

And that is not relaxing.

What are we going to do today?  Don't know yet.  And that isn't a good sign.

Happily, Grandpa is coming over to hang out with us, so the kids won't outnumber the grown ups today.

Your Sunday Best

Jocelyn, hitching up her Cinderella dress as she pads across the rain puddle.

See the other Your Sunday Best Photos at www.aruraljournal.com

How do you play with that?

"It is a happy talent to know how to play."

~Ralph Waldo Emerson

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It will never cease to amaze me how hard it is to teach Zack and AJ to play with toys.

Who has to be taught how to play?  Who ever heard of such a thing?  It absolutely boggles my mind.  Like pigs flying.  How does anyone not just.....know?

And it is, of course, enormously important for kids to play.  Developmentally important.

I mean, everyone has to be taught how to play games.  You need to know the rules, who the other players are, and the objective.  Nobody is expected to pick up Stratego and start to play it right off the bat, without any instructions.

But if you reach into a toybox and pull out a toy car, you know how to push it and say "vroom, vroom," right?  Isn't that just human nature?  If I hand you a toy microphone, you know to hold it to your mouth and pretend to sing.  If you see a big pile of blocks, you might start stacking them.  Maybe you'll even build a tower.

I guess we learn what to do with those things from seeing them in real life.  Or from watching other kids play with them.  The boys have seen other kids play with cars, though, and they didn't put two and two together.  We have toys all over the house, and Zack and AJ just don't have any idea what to do with them.

We spend a great deal of time trying to teach the boys how to play like typical kids.

They learned quickly to like books, probably because they are so much like movies.  Pictures, words, stories ...... a definite beginning and a definite end.  All books follow that format so they have a great element of routine to them.

The boys are great with small puzzles, too.  I mean the little wooden puzzles, with around 10 pieces.  Those, again, have a very definite beginning and end.  You know when you are done.  There's a very clear path to follow to play with puzzles.  The rules are always the same.

But when playing with cars, or trains, or, say, a Little People farm set, there's no definite beginning and end.  The playing isn't done until the player decides it is.

The boys have had to be taught systematically how to play with toys like the Little People farm -- the chicken goes in the roost, the cow goes in the field, the farmer closes the door behind him.  They have to be shown over and over how to play with it, and then on their own, they go through those exact motions.  Every time we get the Little People Farm out and tell them to play, they will play just as they've been taught to.  Chicken goes in the roost, cow goes in the field, farmer closes the door behind him.  Then they look up expectantly, waiting for me to tell them they did a good job playing.

They have had to be taught how to put together a train track.  Make a train go around the track.  Put people on it.  To say "choo choo."

They have to be shown how to press the keys on the little Wiggles keyboard.  They've got no idea what to do with our toy Captain Feathersword sword.  (It plays songs when you wave it around.)

They will touch Play Doh (that in itself is quite an accomplishment) but don't know how to squish it between their fingers, roll it into a ball, or flatten it like pancake, unless I show them and make them do it.  With reinforcers (the promise of a Dora or Wiggles video).

Not only do they have to be taught how to play with toys, they have to be directed as to how long to play with them.  That's not a problem,when you're reading a book or putting a puzzle together.  (Those "definite end" activities.)

We have to set a timer so they know how long to play with the Thomas Train set.  Both boys know how to set a timer and play with an object until the timer goes off.  Zack will glance over at the timer every few seconds to see how much longer he has to play.

AJ gets into it a little, playing with his toys.  If I he does it enough times.  Zack is consistently only "playing" to please me.   He couldn't care less.

I'm mystified.  I'm at a complete loss.  Why aren't they at least enjoying the toys based on the Wiggles and Dora and Diego?  Why don't they like play-acting the movies they watch, at least?  You'd think that wouldn't require much imagination.

Is that what this is -- a lack of imagination?  This absence of pretend play?  Seems like people are more often accused of having an overactive imagination, than the other way around.  I can't wrap my head around it.  You might say I can't imagine it.  Ba-dum-bum!

I'm so jealous when I see other people's Fragile X kids playing with toys.  Really, really playing, and having typical-kid fun.

We take so much learning for granted; the fact that we recognize the emotions people are feeling  by the expressions on their faces; knowing that when someone nods their head up and down, they mean "yes."  We know that the proper and usually accepted response to "how are you?"  Is to say "Fine, how are you?"  We assume everyone knows that pants go on the legs, not the arms.

I think most moms and dads take for granted that their little kid is going to know how to put a toy car in his hand, run it across the floor, and say "vroom," and follow a train around a track and say "choo choo."  I know I certainly never dreamed I'd have kids who didn't know how to do that.

The Photography Gene

I got the "picture snapping" gene from my Grandpa George.

me and my Aunt Connie, snapped by Grandpa, in 1971.

Journal entry from 2005, or What I Knew Then

I was browsing through some old files yesterday and ran across this would-be journal entry (I didn't officially keep a journal but occasionally jotted things down as I thought of them.  Actually that's not much different from how I operate a journal now).

Whenever I talk about our Fragile X diagnosis, I usually stress that it was shocking to me because I didn't believe anything was really wrong with the boys.  I tell people that I was sure they would outgrow whatever was slowing them down developmentally and I thought everybody was just being crazy cautious.

Then I found this note I wrote on November 21, 2005.  Evidently I have blocked this out of my memory.

My dad told me recently too, that he remembers me telling him around Christmas time, the boys' first Christmas when they would have been 10 months old, that I was worried they had autism.  I don't remember thinking that, much less telling him.  I guess I didn't have my head buried deep in the sand, after all.

It's important to keep notes and journals.  Write down what you're thinking.  You have no idea how much you'll forget, or how valuable and astonishing what you are thinking today might be in 5 or 6 years.

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The boys had their 9-month check up last week, and they are growing well -- AJ was 19 pounds, 3 ounces (exactly what Aliza was at 1 year!) and Zack was 17 pounds, 4 ounces.  They are both growing so fast.  Unfortunately they aren't progressing otherwise very well, they should be sitting up well and starting to try to crawl by now, and they aren't at all.  So since last week when I became panicked about that, we've been working with them a lot and AJ can pretty much sit up now.  He falls down though after awhile, he hasn't learned to remember to continue balancing himself, after a minute or a few minutes, he forgets, and he reaches for something, and falls over.  Zack can't sit up at all yet.  We are working with him, but he just doesn't balance well yet. 
So Vicki thought they would benefit from a therapist, who will come over and talk to us about them, and will look at the boys and evaluate all their motor skills.  She might set up a weekly appointment with us, to keep up with their progress until they are walking.  That would be nice, I'd appreciate the help, because right now I'm frustrated that they aren't progressing on their own very well, and I'm worried more than usual (I always worry about this) about them being "normal".  When they were tiny, it was a good 3 months before Zack really focused his eyes, so I spent the first few months of his life worrying he was going to be slow, or blind, or something.  And then it seemed like Zack was raring to go, he rolled over first, and seemed more mobile, so then I worried that AJ was going to have cerebral palsy or something.  The thing is all these things are more common in multiples, so I'm very worried mine won't be normal, mine will be the ones who have problems.  Now that AJ is sitting up, I've shifted my worrying to Zack again, and the possibility of his physical problems.  I also worry that they don't pick things up and put them in their mouths.  This is good in that, if they don't chew on toys, they're less likely to be putting bacteria in their mouths and getting sick.  But at the same time, if they aren't picking things up and putting them in their mouths, they can't feed themselves.  They are great with being spoon fed, they open their mouths enthusiastically most of the time.  But if I put a piece of solid food in their mouths, they make faces like I'm poisoning them, and they spit it out 10 times before it finally has pretty much turned to mush and it stays in.  It's funny, this is the opposite of Aliza, she wasn't interested in being spoon-fed, she only wanted to eat what she could pick up and put in her mouth herself.
So I should probably make a list of things to talk to the therapist about, including the sitting up and crawling issues, and the feeding issues.  They just aren't like their sister in a lot of ways, and while I know every baby is different, it makes me worry they aren't "right".
They do babble a little bit, Zack does moreso than AJ.  So that's good, although I wish they did more of that too.  Zack babbles some actual sounds, and AJ just sort of hums and grunts, but it seems to have a rhythm to it, and he kinds of responds to us talking to him that way.  Zack is almost musical, AJ is more like a caveman.
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Funny, I don't remember being this worried, their first year.  I do remember that Zack didn't focus his eyes for quite a while, but I don't remember it going on for so long.  When tapped to remember something from their first year, my memory has rose-colored glasses.  Aside from the sleeping issue, of course.  I remember not sleeping.

To the lady who glared at me at McDonald's this morning:

I'm sorry, but get over it.  You are way over dressed for McDonald's anyway.  You, in your beautiful powder blue trench-style coat, heavily made up face, and beehive hairdo.

Both my boys were very distressed at how long they were taking with our Chicken Tenders.  Zack was screaming and AJ was reaching out to inch or grab at anything or anybody within reach.  Which unfortunately included a lot of people because it was fairly crowded.  I'm sorry you got close enough to the double stroller for AJ to reach up and brush his foot against your coat but you didn't have to glare at me like that, brushing at your coat viciously, as if he'd actually gotten it dirty.  He didn't even have his shoes on!  He barely came in contact with you.

Maybe if I hadn't been holding our receipt and AJ's shoes in one hand and trying to keep all 8 of the boys' limbs within the stroller with the other hand, while comforting Zack and watching desperately for our order, I might have been able to stop him.

You were at the Mall of America McDonald's on a Saturday, for crying out loud, did you really think you wouldn't come in contact with some children?  When you go to the zoo, do you complain that there're too many animals around?

I take it back.  I'm not sorry.  I kind of wish he'd been closer and could have kicked you good.

And to everyone who kept on walking, right toward us, forcing me to swerve the double stroller full of over 100 pounds of grabby-feet-dragging-overstimulated boys around you....thanks for not moving.  Next time I'll just run ya'll over.

Which is which?

Yesterday, AJ's therapist, who has been working with him since last July, mistook Zack for AJ and tried to bring him upstairs to begin working.  Zack backed away from her and giggled and told her "no, no, no."

I admit that if I dress them alike, I sometimes have to stare at them for a few seconds before I can discern which is which.

Can you tell?

Picture 1

Picture 2

Picture 3

Picture 4

Picture 5

Picture 6

Picture 7

Picture 8

Had to snap this one quick, before they bit each others' faces.

Put your guesses in the comments, and I'll comment with results in a few days.  Assuming I can tell which one is which.

Falling Asleep

I would have thought that someone who could fall asleep in school was obviously incredibly relaxed; sleeping is a sign of letting go of stress, right?  I have boys with Fragile X though, and I've seen them conk out during stressful times, so I know it can be a reaction to a great overload of stress, too.

Anyway, Aliza recently told me she has been soooo tired at school, and has even fallen asleep occasionally, during movies at school.

Foolish child.  She never should have told me that, because I upped her bedtime by a half hour.

Every day when I have picked her up in the past week or so, I ask her if she got tired or fell asleep at school that day.  Yesterday she told me that she didn't actually fall asleep, but she was soooo very tired in the morning that she had a headache for a little while.

Wrong answer.  Early bedtime.

She has not put this together yet -- that her complaints have directly resulted in my making her go to bed earlier.  I imagine it's only a matter of time, though.  Last night as she climbed up into her top bunk she looked out her window and exclaimed "but it's still light out!" Cry me a river, sister.  Stop telling me you're so tired, and I'll stop putting you to bed earlier than any other kid in the neighborhood.

I can make her go to bed early, but I can't make her fall asleep.  I put her to bed a little after 8 last night and at 9, she was still laying there, trying to fall asleep.  Don't know what to do about that.

Zack has been a sweet boy lately, not screaming or pinching or biting much at all.  Agreeable and smiley.  But today he fell asleep during a break in therapy.  I think the last time that kid took an afternoon nap was some time in 2008.

AJ has been very giggly, lately, but also very bite-y and pinchy.  I don't know why my sweet boy is doing this.  At school this morning, he swatted at a teacher who told him to sit down and wait for something.  I know this is a manifestation of his disability, his teachers know that, but I still feel like I should appologize for his behavior.

It's always something.  Everybody's going to bed early tonight.

Gratuitous Zoo Pictures

It was such a beautiful day yesterday, so we took the kids to the zoo.  I have loved going to the zoo (any zoo, really) ever since before I had children.  Did I ever mention that our wedding reception was at the zoo?  I REALLY love the zoo.

At one time I had this fantasy that I'd visit all the zoos in the United States.  You know, the way some people want to visit all the major league baseball fields.  It'll never happen, because I have other goals that are more important now, but I still love hanging out at the zoo and now my three children love it, too. 

We had a lot of fun at the Family Farm area of the zoo yesterday.  Here, they check out the goats.

 

And here, two goats come over to say hello, and three kids make themselves scarce because they aren't interested in that kind of closeness.  This is a little more goat-in-your-face than they were looking for.

 

They loved the trying out the tractor, though.

This tiger seemed very interested in the kids.  And they, in him.  There are several inches of glass between the kids and the wildlife here, in case you can't see it.

Why Zack would appear to love this tiger and yet hate our housecat is a mystery to me.

They did a little climbing.

Watched the takins head-butt each other.

Apparently we were keeping this camel from his nap.

We promise to make good use of our zoo membership this summer!

Carriers have trouble with math.....or just a Type A personality?

Every day when the boys and I pick Aliza up from school, I ask her three things.

"How was your day?"
"Did you learn anything?"
"Did you make any new friends?"

She usually responds with "fine."  "no."  "no."  That's just our routine, I guess.

So on Wednesday of this week we picked her up, I asked her those three questions, and she responded as usual.  Then she told me that a friend of hers had thrown up at school and had to take a nap in the nurse's office.  I asked her how she knew that and she said she'd seen her, laying on the cot in the nurse's office.

It didn't occur to me at the time to ask what Aliza was doing in the nurse's office, probably because I was maneuvering our way out of the school parking lot, dodging kids, parents, and cars, while watching the crossing guards and keeping half an eye on the boys in the back of the car.

When we got home Aliza went straight upstairs to unwind with a little iCarly, and I noticed a message on the machine.  It was from her teacher.

Apparently that afternoon, during math, Aliza had burst into tears, claimed she was very tired, and needed to go lay down.  Her teacher was really concerned because it was way out of character for her to suddenly fall apart in class like that.  She said that Aliza said she'd actually felt very tired, in the afternoons, a couple of times that week.  She wondered if anything else was going on that I knew of.

I got the boys settled with a Dora video and some cereal, so they'd be okay for a few minutes alone so I could go up and talk to Aliza.


"I don't know what 9 times 9 is." was Aliza's response, when I asked her what happened at school that day.

Evidently, they'd just had a timed multiplication test and she'd performed poorly.  She got only 14 out of 50, and she was really worried because next week they will have another timed test just like that, that will go on her report card.

The very first problem on the timed test was 9 times 9, and when she didn't know that one, she couldn't bring herself to move on very well.  She did, because she managed to answer 14 of them correctly, but she tortured herself over that first problem.

Sometimes I think it might be easier if I didn't know so much.  I know she's a carrier of the Fragile X gene and I'm always watching her for the signs of problems that carriers can have.  I know that carriers often have trouble with math (I certainly did, and do).  Every time she's doing math homework and has trouble with something, that's immediately where my thoughts go.

When if I stopped and looked at the whole forest and not each individual tree, I'd remember that she really is very good at math.

Of course if I didn't know about her being a carrier, I'd still think she got the "bad math" gene from me, because I always struggled with it.

So is it just her perfectionist personality?  And what can I do about that?  She certainly doesn't get that from me.

This is how I feel about math.

Trophys, Ribbons, & Metals

This past Tuesday, I got a trophy.   Two of them, actually.   It was the Minnesota Valley Mothers of Multiples spring banquet, and I was awarded one of two lifetime achievement awards.   I came home with two trophies.

Aliza, winner of numerous ribbons and medals from various extracurricular activities such as soccer, dance, and science fair, was green with envy.   She's never gotten a trophy.  It doesn't matter if she won first place; all that matters is what kind of award she got.

So when she saw my two trophies on the table, she went all wide-eyed.

"Can I have them?"  She asked.

"Sure, I guess," I told her. 

She quickly scratched my name right off them and put them in her awards display.

The important thing is the possessing of the award, not the actual winning of it, evidently.

(And I guess medals are often made of metal, so it only makes sense that the two words would be interchangeable, as well as homonyms.)

Look where I am.

Plus, I just figured out how to get a screenshot capture.  My night is complete.

Symmisms and other Arbitrary Thoughts for a Monday

You know those nonsense letters that some blogs need you to type in, in order to submit a comment?  Well, those usually nonsense words?  Today it wanted me to type in "symmisms."  Doesn't that sound like it should be a word?

I thought it did.  But I Googled it and Google had no idea what it was.  Google very politely wanted to know if I meant to type "Sammyisms."  What is that?  Sammy Davis. Jr. quotes?  I didn't take the time to investigate.

Anyway I've decided that "Symmism" is its own definition.  A symmism is random letters that when put together, both look and sound like they should make a real word.  But they don't.  Webster, you better credit me properly for that when it becomes big enough to be included in the official English Dictionary.  Or I'll bishimicate you.

Arbitrary Thought #2:  When it comes to photos, bigger is almost always better.  Closer is almost always better, too.

Nana and the Grandgirls

"I must do everything my big sister does."

Arbitrary Thought #3:  I'm 41 years old but I still can't swear out loud, very much, because of what my parents will think.  I swear in my head often though.

Arbitrary Thought #4:  It's both funny and silly that no hotel, at least no hotel I've ever been in, has a 13th floor.  Do they really think fate can be fooled?  The 14th floor is obviously really the 13th.  I wonder if more unlucky things happen to those who stay on the "14th" floor than the other floors?  Someone should research that.

Arbitrary Thought #5:  Whoever invented bubbles is an absolute genius.  I hope he/she was appreciated in his/her own time.

Aribitrary Thought #6:  How does Charlie Sheen still have any custody whatsoever of his children?  He must have a hell of a lawyer.  (Sorry, mom.)

Arbitrary Thought #7:  It's a crazy world we live in, when I paid $3.84 a gallon for gas this morning and felt like I got a good deal.


*By the way, thank you Twitter and Facebook, for rendering me nearly incapable of having an interesting thought more than 140 characters long.

Feel Good Friday: Spring Explosion

I have bene wanting to sit here and get a post ready for Feel Good Friday all day, but haven't had a chance to sit at the laptop and do it until now.  I volunteered at the boys' school this morning which was fun as always, and I met another one of the team that works with the boys.  Then I ran home, the boys got home from school and ate all their chicken for lunch (score 1 for Arby's).  Then the therapists arrived, and we have been working on FST (Family Service Training) for the past couple of hours.

But it's still Friday, right?  It's not like I'm too late.

Spring has finally exploded all across our backyard.  It's actually not the most colorful spring I've ever seen, but I'll take it.

Part of me wanted to smart off at it and say "took you long enough," but I feared retribution in the form of more clouds and rain.  So I kept my trap shut and got out the camera.

Zack and AJ played back there this week after school with a few of the neighbor kids.

Did you know there was a time when I thought I would never be able to say that sentence?

*Smile*  We are so typical.

I mean, they jumped in the trampoline, played on the swings and slide, and in the playhouse with their sister and two other kids.  At one point, a little girl actually got AJ to agree to sit down in a little lawn chair so she could play "school" with him.

AJ PLAYED "SCHOOL!"  Only for a few minutes.  But STILL!

We are so, so lucky to live in this neighborhood full of children ready to take on whatever challenges the boys might present, and find a way to play with them.  That little girl didn't care that AJ didn't cooperate too much as her "student."  She just played as much as he was able to.

Aliza swung herself across the monkey bars and AJ wanted to do it too (learning from imitation, at its finest, right here in my backyard) so she held him up and helped him across.

Well, Zack thought that looked pretty fun and wanted a turn, too (imitation, over and over, loving it!) but Aliza wasn't done with AJ yet, so she told Zack to get down and wait for his turn.  He screamed and looked like he was going to cry.  You see, he's not much for hearing "no."  It kind of feels like a slap in the face for him.  So Aliza ran right over and gave him a hug, and he hugged her back, and then we all clapped, and it was amazing!

How come those kind of interactions didn't happen inside, all winter?  What is it about the outdoors that makes magic like that happen?

Anyway, life is good.

Look at these cute tulips the boys made for me at school!  A couple of years ago I would get things from the school and I didn't really believe the boys had a hand in making them.  Picking up a bottle of glue and squirting it out onto construction paper was just not something they could even be bribed to do.  But now, I took these out of their backpack, held them up, and said "did you make these?  They are so pretty, I love them!"  And they smiled shyly.  Oh yes, those were handmade by a couple of little boys.....

It's a very feel-good Friday!  Check out the other Feel Good Friday entries over at Lia Sophia Tomgirl!  Sometime soon the originator of Feel Good Friday, The Girl Next Door Grows Up, will be back and online, but until then, many thanks to Lia Sophia Tomgirl for keeping it going!