What's in a name?

I think if I'd known I was going to have twin boys who would have such a hard time learning to talk, I might have given my firstborn an easier name to pronounce.  With the L and the Z, it's a lisper's nightmare.

Here's a short list of some of the names the boys have called their sister:
Elijah
I-la
Asia
I-na

This morning I think, I THINK, AJ was saying "hi Aliza."  It came out more like "hi Sea-ah."  Pretty close, actually. 

"I think he just called me Isaiah."  Aliza said.

Although on second thought I don't know if I would have named her something else, because I loved her name so very much.  When we were pregnant with her we didn't know she was a girl, and I told everyone that if this baby wasn't a girl that I could name Aliza Jewel, I was going to change my own name to that.

Now she tells me, if it were up to her, her name would be Sarah.  Or something you can find printed on a mug. I understand that, too.  I always wanted to be Jenny or Amy.  Bonnie was almost never on a mug.

Before and After Photo - Doing the Blog Hop

I'm playing in a blog hop today at Pixel Perfect, where you show before after versions of a photo you edited.  I wasn't just trying to pretty-up this shot of Zack.  It NEEDED Photoshopping.  In photo #1, note the bruising by the eye, and the bat in the cave.

And in photo #2, no bat in the cave, no bruising, and the skin tone warmed up.  I cleared up the chapped lips just a little, too.  Nice, huh?

Shot with a Nikon D3000, and edited in Photoshop.  Just touched up and fixed blemishes and warmed the color temp.

Which One Should Get the Dumbest Pharmacy Award?

I won't divulge the names of the pharmacies in the interest of their privacy, and in the interest of their not getting mad and spitting in my prescriptions -- since we still get drugs from both of these places.

1.  One medication the boys take comes in a liquid form, 30 doses to a bottle.  Not long ago, a pharmacy gave us that medication in 15 different bottles, each with only 2 doses in it.  Oh, how I wish I'd taken a picture of that bag full of prescription bottles before I consolidated it into just two!

2.  A different pharmacy can't seem to keep in their records that the boys both have Medical Assistance, and they messed up the processing the first time around, and had to call M.A. to straighten it out.  In the meantime they made me drive around the building and get in the back of the drive-thru line so they could help the cars behind me, while waiting on hold with M.A.  When I got up to the window the second time and she said to me "we are still on the phone with M.A.  It'll be just another minute or so.  You can wait there, but if a car comes up behind you could you drive around again please?" I nearly got out of the car and decked her.

Help me decide which one should get the trophy.

Political Me

I"m not really the political type.  I always vote and try to pay attention to issues, but I've never really been able to get into it.

Yesterday was "Disability Matters Day" at the Minnesota state capital in St. Paul, and I thought I'd see what it was all about.  I registered through ARC Twin Cities, and Mark took the day off work to wrangle the kids.  I was very excited to to get all polished up and go spend my day with people who polished themselves up.  I got a new pair of cute, but completely sensible shoes for the occasion.

Then the night before, I started to feel a little weird about going by myself.  Which is odd in itself because I go places by myself all the time.  But this was really going to be a "fish out of water" experience.  I hadn't been to the capital since 6th grade.

So I drove up to the capital in the morning, and after a little scrambling to find quarters to pay for a parking meter, I grabbed my bag, including my Kindle in case there was some down time, and headed up the capital steps.

Outside the marble rotunda, everywhere there were people in wheelchairs and with crutches and canes.  People who were obviously mentally handicapped, following other people around.  Many, many people with Down's Syndrome.  I thought about what my boys would be like there.  I thought about the screaming, whining, biting my hand, and trying to bolt for the door.  I pictured the Cookie Crisp and Froot Loops all over the capital rotunda floor.  I figured it wasn't likely were many autistic kids there.

The first legislative briefing was already underway, but they were going to be repeating it in a half hour, so I figured I'd wait till then to go in and find myself a seat.  As I stood there right outside the rotunda trying to decide what to do while I waited, suddenly behind me I heard a very familiar, sweet little voice singing:

"Come on, vamonos!  Everybody, let's go!  Come on let's get to it.  I know that we can do it!"

I turned around and there was a little boy sitting on a bench with his mom, watching Dora the Explorer on a Smartphone, or something.

"Where do we need to go?  Bridge..........jungle...........pyramid!"

I think I even know what episode they were watching.  Yes, that little Dora, she follows me wherever I go.

And I thought, maybe there is one autistic kid here today.

So I went to the legislative briefing, and the rally after that.  I clapped when everyone else clapped, held up a sign that said "INDEPENDENCE COSTS LESS" that someone handed me when I registered, and cheered and whooped when everyone else did.

ARC had emailed a template for writing up a "family story" to give to your legislator, to briefly summarize your family's disability situation.  So even though I didn't meet with her, I did leave a copy of "The Korman Family Story," complete with an adorable photo of the boys, at Pam Mhyra's office.  A couple of the workers at the registration desk wanted copies too, so I felt good that I got some word out about our family.

But I'm still not feeling it -- whatever it is that drives people to be political.  To shout at rallys and sign petitions and promote their agendas.  Maybe I'm lucky.  Maybe I don't feel it because I've never had to fight for my rights.  But I think I'll go to these things occasionally to make sure things stay in my favor.

Or maybe next year, I'll have Mark attend Disability Matters Day.  He's always had a bit of a political bug in him...

My Favorite Alternative to Holland - Amsterdam International

I've mentioned a couple of times how I feel about Welcome to Holland.  I mentioned that I hated it, and I wrote a sort of addendum to it about having to live in Holland and Italy at the same time.  Then a few months later, I read another terrific alternative Holland story.

A couple of months ago I stumbled across this blog called "Uncommon Sense", about an absolutely adorable little two-year-old girl with lots of developmental delays.  No diagnosis.  Of course I stared at pictures and video of her intently, trying to decide if Fragile X was a possibility.  Not that you can always tell by looking.  But sometimes there are similar facial characteristics in children with Fragile X, and sometimes you can tell in the mannerisms.  So I watched the videos of her with particular interest.

I've read most of her blog, looking to see if they've tested her for Fragile X Syndrome, and I don't see that they've done that particular test.  They did have a microarray test done, which looks for chromosome section deletions or duplications.  Fragile X is caused by a repetition of part of a chromosome, so I would imagine that a microarray test would have shown that, but I don't know for sure.  At any rate, in the videos and pictures of the little girl I don't see anything that jumps out at me as being FragileX-y.  But I'll be the first to admit I could be wrong.

Then I found this awesome story she wrote -- her version of Welcome to Holland.  Which I think is SO fantastic.

I would have found it so much more comforting than Welcome to Holland when my boys were first diagnosed, four and a half years ago. One of the therapists from the school brought me a bunch of autism information, along with a sheet with Welcome to Holland printed on it......and I hated it.  Just being honest. I was not in Holland, not by a longshot.

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This is Dana Neider's "Amsterdam International."

Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.

And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

© Dana Nieder 10/2010 All Rights Reserved

Sippy Cups Revisited

It's been quite awhile since I mentioned our sippy cup battle.  I know, and I'm sorry. We started it in late October of last year, and the saga continued into November as Zack stubbornly held out.  By Thanksgiving, we'd given in.  He had his bottles back.

I didn't want to have to write something all negative, like "well we've gotten nowhere fast, Zack wins every battle hands down because I can't take his screaming."

I didn't want to bring it up, until I had some real progress to report.

So, here's what happened.

One day last week, the boys' teacher called me and said that she thought Zack was thirsty at school, because he sticks his butterfly chewy under the faucet and then licks the water off of it.  So she wondered if I could send a sippy cup into school for him.

I thought quickly - well he doesn't actually drink from sippy cups yet, but there's no way I'm sending a bottle in to kindergarten with him - and reinforcing his bottle obsession.  So I told her, sure, I'll send in a sippy cup, you see if you can get him to drink from it.  Good luck with that.

And the very next day she emails and says casually "Zack drank about half the water out of the sippy cup today."

"Are you kidding?  He drank out of a sippy cup?  He drank WATER out of a SIPPY CUP?!"  I wrote back.

So we've kept a sippy cup at school now for the past few days.  Apparently since he has never, ever seen a bottle at school, he didn't even fight it.  He seems to accept that it's the sippy, or nothing at school.  She did say the second day he was less enthusiastic about it.  She had to reinforce (that is ABA therapist speak for "bribe") him with Cookie Crisp to get him to take a drink.  But, he's doing it.

So, we have created a plan to bring the sippy success into the house.  I'm going to have him drink from sippy cups every day at school, until it's just so normal for him, he doesn't even think twice about whether to accept it or not, when it's offered to him.  We'll start putting juice in it at school, the same juice we drink at home, so it's real tasty and familiar. 

Then one day, he'll get to bring his sippy cup home on the bus.  Maybe more than one day.  He can drink from it the whole way home.  And then he can bring it in the house.  And on that day....perhaps.....there just aren't any bottles in the house anymore.  So it will, in theory, be the smoothest transition possible.  If I have my way, he won't even realize a change took place.  We'll pave the sippy cup road from school to home as smoothly as possible so that it just slides in, seamlessly.

Now, if only they would both just start casually going potty at school......

How's that for Feel Good Friday material!

This is what an 8 year old looks like

Good Morning!

8 years ago this morning, we were still dinks.

I think maybe the very day Aliza was born, her dad knew she'd be a great big sister.  It might have taken me another day or so.  I was under anesthesia that day.  It took me a day or so to emerge from the fog.

Even then, I remember saying "yeah, well, let's wait and see how this first one turns out."  I've never been one for planning, for committing to things.  I'm more "let's see where life takes us."

And Aliza, sweetheart, it's been quite a ride!

Truly, she turned out so wonderful that barely 18 months later, we decided we needed to have another one just like her.

Aliza, if you look it up, is Hebrew and means "joyful."  It couldn't be a better fit for her.

Wordful Wednesday - Riding in the Car, Topless

Temperature outside: 13 degrees.  Temperature inside the car:  around 78 degrees.

I think AJ would like to say "Dude, don't do that.  People are looking.  Come on."

And in case you were wondering how fast I was driving when I took this picture, I wasn't.  I was sitting at a red light and I just held up the cell phone and blindly clicked.  I didn't even turn around.  So no worries!

He Is Not a Fan of Balloons

One of the things the ABA therapists will do with Zack is to use a pump to blow up a balloon, and then let it go so it flies around the room, making that incredibly loud screeching noise.

Zack doesn't like it.  The other day his therapist got the balloon pump out was digging through the bin for the balloons when he realized Zack had left the room.  He got up to look for him and found him standing in the corner of the shower.

"No pump."  Zack looked up and told him.

He's a little man of few words, but he gets his message across.

Rearranging the Furniture

You know how when you rearrange the furniture, first you have to move all the little stuff around the furniture out of the way?  And then there's the measuring, moving even more stuff, stopping in between for potty breaks and meals, help with broken DVDs, answering phones, and tears and joy over rediscovered toys.

And living underneath the newly moved furniture is an entire ecosystem including dust bunnies, socks, slippers, headbands, books, Little People, Barbie clothes, candy wrappers, and junk mail which then has to be cleaned up?

And then once the furniture is moved to its new space it has to be sat upon, or jumped upon, or otherwise man-handled and admired, because being in a new place, it's like brand new again.

So that by the time the furniture moving, cleaning, and admiring is done, it's almost supper time and you're too exhausted to put back all the little stuff you moved in the first place - sound familiar?

That's pretty much what we did this weekend.

In the last couple of months, AJ seems to have lost the ability to spend a whole night in his own bed.  So we thought, if we moved the queen bed we had in storage into his room, at least then I could just lay down with him and eliminate the need for him to be in our bed.

The bed AJ had been sleeping in was actually one of Aliza's bunk beds, so first we cleared out space in her room for the bunk to move back in.  Then we moved the queen bed into AJ's room.  Then I had to prioritize the activities of the rest of the day, because it was getting late.  I figured, at the very least, the beds need to be made so everyone has a place to crash tonight, so I took care of that.

What took me only about three paragraphs to describe took most of a weekend to accomplish.  Maybe I should have embellished more.

Anyway AJ is thrilled about his new bed.  He and Zack throw all the blankets and pillows on the floor and jump on it at least twice a day.  But more importantly, he has spent the last two nights sleeping all night, all by himself, in his own bed.

And I have no pictures of that because it only occurs to me to take pictures of them when they are sitting together being cute.  Like this.

And these are pictures I took at a park one morning last week, when it was snowing.



Same picture as above, only with a bit of "it was a dark and stormy night" look to it.



In Photoshop this is called the "old newspaper" photo effect.



Looking forward to when the snow melts, and we can come back to this park and feed the ducks on the pond.

There are a lot of us.

I am surprised and humbled (but sheepishly smiling as well) to have won this month's iwrite-iblog-iwin contest over at The Girl Next Door Grows Up, for this post.  I'm surprised, because I thought there were so many good entries -- over 60 of them, I think.  There's a list of all the entries right here.

You should know, though, that there are a bunch of us who clean up big kid and adult diapers every day without commenting on it.  They are all saints (something I was amused to be called a couple of times, in the comments.  Clearly they don't know me in real life!).  And they all deserve prizes for doing it in a way that doesn't humiliate their children and for loving their children wholeheartedly throughout and despite any and all unpleasant parental duties (heehee, I said doodies.  Sorry, couldn't resist.).

I'm pretty sure, if you look through the list below on the sidebar of Fragile X Blogs and Special Needs Blogs that every single writer there has done it.  I think you should start at the top and read each one of them. They may not blog about it specifically but each of them is doing things for their kids that most moms and dads of "typical" kids probably couldn't imagine having to do.

And if you thought this was a personal, honest, and painfully straightforward commentary, wait till these boys hit puberty.... stay tuned and let the good times roll!

A Train! A Train!

This is post is specifically so grandma & grandpa can see how much the boys like the bathtubThomas the Train toy they got for Christmas.....well, and here's another example of me giving Zack credit for something only AJ does.  Zack just sits there while AJ hollers "A train!  A train!"  But Zack looked happy, so I'm going to assume he loved it too.

The enthusiam was much more exhuberant a couple of minutes earlier, and so by the time I had Mark run downstairs to get the camera it had calmed down a bit.  But you get the idea!

Aggression

You'd think after 2 1/2 years of ABA therapy, we'd be compliant, and done with aggression.  And most of the time, we are.  I have weekly meetings with the lead therapists and they tabulate the number of aggressions each boy had from that week (mostly biting and pinching) and the numbers have been way, way down.  AJ actually had his first zero aggressions week.

But today has been rough for some reason, and yesterday wasn't exactly a walk in the park.  I'm not sure what has changed, and it's exhausting to constantly try and come up with a reason for it.  Has anything in the routine changed?  Are there new therapists or teachers?  A change in medication?  Have either of them been sick, or not sleeping well?  Is he hungry?  What is the mysterious reason for this change in behaviors?

At least one of these things occurs practically all the time.  And the reason is Fragile X.  I get so tired of trying to think of what might have caused a behavior.  And trying to figure out what to do about it.  I hate when they ask me.  I want to say, isn't that why you are here?  If I knew what the heck to do with these kids, I wouldn't need a team of 8 therapists rotating through my house every day.  One night this week three of them were here until almost 7:30.  They were training someone, and I had no idea how much I rely on their leaving by 7:00 PM until they were here later.  I was just desperate for them to leave so I could relax, put on my mental PJs.  I mean, with people working in my house all afternoon, I can't really let my hair down, you know?  And I didn't realize how much I need them to leave until they didn't.

There's even therapy on Saturday morning.  I so look forward to Sundays, when nobody comes over!

I might have to take this show on the road

  Get more Feel Good Friday at The Girl Next Door Grows Up.


Are you familiar with the children's game "Hedbanz?"    Each player wears a headband with a card stuck in it, that all other players can see.  Then players take turns asking questions in order to figure out what they are.

It comes with a list of suggested, logical questions:

Do I have legs?
Could I be a pet?
Can I swim?
Do I make noise?
Can I fly?
Am I a vegetable?

But when you are eight years old, you don't need suggestions.  I sat in the living room last night, listening to Aliza and the little neighbor girl playing Hedbanz, and they went back and forth asking questions.  They started out right away with specifics.

Am I scissors?
Am I a basketball?
Am I dice?
Am I a spoon?

Then they got the hang of it -- general questions will offer clues to your identity.  So they began with:

Can I be chewed?
Am I slippery?
Am I boring?
Am I invisible?

And then it started to go in an odd direction.

Do I have wood on me?

and then....

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Can I be rubbed against the wall?

And I couldn't take anymore.  I fell on the floor laughing.  And immediately got up to start writing it down.

People, I could not make this stuff up.  I wish I could.

The Five Different Animals

A play by Aliza Korman, 7 years old

Narrator:  Once there were five animals and they were all different.

Cat:  Turtle, you move so slow.

Turtle:  Cat, you have too long of a tail.

Dog:  Hamster you are so, so small.

Hamster:  Dog, you are too big.

Mouse:  Everybody stop making fun of everybody.

Narrator:  But no one listened!

Turtle:  You want to fight me, cat?

Cat:  Yes.

Dog:  Hamster, do you want to fight me?

Hamster:  Yes.

Mouse:  No one can fight at all!

Bird:  I'm going to eat you, mouse!

Mouse:  HELP!

Narrator:  Everybody looked

Turtle:  Hang in there, mouse.

Dog.  We are coming, mouse!

Cat:  Mouse look out!

Bird:  Ha ha ha.

All (except mouse):  Are you ok?

All.:  And today's moral is:  Do not judge by skin or size and listen to people when they are talking.

A Big Mess

How come they can't make all the electronic gadgets we have to charge up work with the same electrical cord?  I would love to have just one that works with everything.  That would eliminate problems like this:

They are the same on the plug-into-the-wall end.  Why can't all the manufacturers of MP3 players, ipods, ipads, cell phones, digital cameras, mini DVD players, and Kindles all get together and decide on one type of plug, once and for all?  It would really go a long way toward destressing my morning.

I did it!

I did something awesome today.

I talked to the boys' kindergarten class about Fragile X.

I was so nervous!  Silly, I know.  I was just worried they'd ask me questions that would be hard to answer.  But they didn't, they were very easy and very sweet.

I asked them if they’d heard of Fragile X. Nobody had.  I told them Fragile X is kind of like autism, and that it's something they were born with, that makes their brains not work quite like everyone else’s. They didn’t get it from doing something wrong or different, they were born this way.

I said it makes them different in a lot of ways, but they are the same as the other kids in a lot of ways, too.

Then I told them I had brought something that I thought might help them understand how Zack and AJ are different, and yet the same.  And I brought out the toy car.  It's pretty cool.  AJ got it for Christmas.

I pushed the button that makes the car rev its engine, flash its lights, and then go forward, popping a wheelie.  I started to go into how fun the car was and immediately they interrupted me and wanted to know what the other buttons on the car did.  So, we had to try out each button.  Then one by one, half the class needed to tell me about the remote control cars, trucks, and helicopters they have at home.  And one boy didn't have one but he'd seen one at the mall.  So I let them tell me about them all, and then we got back on track.

I told them how the car was pretty fun, but if it didn't have the lights and the noises and stuff -- if it didn't go unless you pushed it with your hand, it would still be really fun, right?  You could still play with it.  They all agreed (thank goodness) that it would still be fun.  Then I said, that's what Zack & AJ are like -- they are like the toy car that doesn't have lights or noises, and doesn't go by itself.  You have to play with them a little differently, but they can still be a lot of fun.

Then we made a list on the whiteboard of everything they like to do.  And they were very enthusiastic about this task.  They could have spent the rest of the day telling me things they like to do, and watching me write them all down on the whiteboard.  I prompted them to say things like "playground" and "swimming" since it's winter and I don't think they necessarily have those activities on their minds at the moment.

Then we went through the list, one by one, and talked about each thing.  I asked them if they thought Zack and AJ liked each thing too, and they guessed, yes or no.  It was funny, most of the time they were completely right.  They understand already what the boys can and can't do.  They knew they liked puzzles, books, and swimming, but knew the boys would not play football.

Then I lowered my voice and told them I had one more thing to tell them, something very special and just between us.  I asked Mrs. Williams if she could give us a moment to chat, and she agreed (she was in on it, I didn't surprise her) and she went to the back of the room.

I leaned in a little closer to the kids, and they leaned in closer to me.  They were all ears and big eyes -- I had them.

I asked them, who do you think is the most important person in this room?

One boy knew right away -- he said Mrs. Williams.  Yep, I said, she is the one who will teach you and help you with everything you need in this class.  Now, who do AJ & Zack learn from?

And that same kid said, "Mrs. Williams?"

I said, nope.  They learn from each of you.  They won't actually learn much from Mrs. Williams, but they are watching and listening to you guys, all the time.  So it's very important that you act appropriately and do what Mrs. Williams tells them too.  Even if they aren't talking to Zack & AJ, even if they just let them watch what they are doing.....they are important teachers for the boys.

Then I called Mrs. Williams back over and told her we were done talking, and thanked her for understanding.

I told the kids that it’s okay to notice the ways in which the boys are different. It’s okay to ask your teacher questions about them, anytime. It’s okay if you don’t always understand what they say or do. But I told them it’s never, ever okay to make fun of them, or anybody else for being different.

Then I told them, go ahead and say hi to the boys when you see them next, and then offer them a high five -- they love high fives!  Then I gave each kid a high five.

I thought it went really well, I was just racing with adrenaline when I left.  I am very excited that I did it!

Poop: The Hard Truth

As moms and dads of special needs kids, we talk about almost every aspect of our lives.  We share our hopes and fears, our trials and triumphs.  We express great joy at milestones finally reached, and desperate despair that some milestones will never be realized.  We talk good days, bad days and everything in between. 

There is one piece of reality, though, that I rarely see discussed.

This is about poop.  The poop of a 45-pound, five-year-old kid (two of 'em, actually) with sensory issues and anxiety but no sense of what is gross, who isn't potty trained.  At all.

Most of your five-year-olds have reached a point where mom doesn't have to be involved in their potty activities as much.  You might have your occasional constipation issue or God forbid, diarrhea, but by and large they are taking care of their bathroom needs themselves, like the rest of civilization.  You are probably only dealing with a little mess, while they perfect the art of cleaning their own butts.

Not so at our house.  I am as involved in the boys' personal bathroom experiences now as I was the day they were born.  The two of them poop an average of twice a day (not much constipation here, folks) and they are 5 years and 11 months old, which makes them (getting out my calculator out now) around 2,155 days old, which means there have been 4,310 poops per child, times two for twins -- 8,620 poops since February, 2005.  Roughly.  Now they were in daycare for about two years, and Mark changes his share, and we do get help from family, so it's not like I've changed all 8,620 of them.  But I've definitely changed the majority.

By the way, if the title wasn't warning enough, this post is not for the squeamish.

Gosh, there are just so many awesome things I have to say about the poop in our lives.  I hardly know where to begin.

First off there's the marvelous fact that I'm still shopping in the baby section for diapers at Target, for the 8th year in a row.  (Aliza was two and in diapers when the boys were born, and they are almost six now...I didn't even have to use the calculator for that one).

Secondly, there's the fact that I'm still dealing with things like diaper rash at age five.

But that's all nothing.

I have to worry about whether they have pooped and will smell in public, especially at school, when they are trying to find a way to fit in and get the other kindergarteners to accept them.  And when I say "they are trying" I mean, their teachers and therapists and I are trying.

While they aren't in control and aware enough of their functions to actually go in the potty, they are aware enough to know that they are uncomfortable after pooping and sometimes will stick their hands down their pants to itch or otherwise seek out what is making them feel uncomfortable.  That's certainly not going to lead to social acceptance.

(eeuuww, I know.  I"m sorry.  Hang in there.)

A faint aura of poo hangs in the air like a mist throughout the entire house, nearly all the time.  It's like we have a poo-scented air freshener.  We take diapers out to the garbage immediately to get them out of the house which helps eliminate some of the pungence.  But by garbage day, the stench around the garbage can is sometimes horrifying.

They aren't always cooperative with a diaper change.  There can be a lot of squirming.  Kind of like an infant might squirm, only they are 45ish pounds, and strong as oxes. 

You can scrub the top several layers of skin off your hands with antibacterial soap after changing a poopy diaper, but sometimes that smell just endures for hours.  Many days, I spend a great deal of time looking at my hands, sleeves, shirt, and pants trying to figure out if I got a little on me somewhere.  The scent of poo follows me everywhere I go.  (Oh my, no one is ever going to sit next to me again without sniffing suspiciously, are they?)

I've seen every form of poop that has ever existed.  I've seen hard and soft.  Rolly and sticky.  Runny and thick.  Stay-in-one-place, and go-all-over.  Brown, tan, beige, cream, green, black, orange, and yellow.  But basically, all the forms of poop can all be slotted in one of two descriptions; the rolly kind, or the sticky kind.

While I'm changing the boys, I'll discuss with myself the pros and cons of each type.  I can't decide which kind of poop is my favorite. 

The rolly kind is easy to pick up and dispose of, but is all too likely to roll right out of the diaper and onto the floor.  I may see it immediately and pick it up, or I may not see it.  In that case, either I see it within a few minutes and pick it up, or someone steps on it.  Preferrably me, or someone who will notice it right away and won't track it all over the house.

Or, do I prefer the sticky kind, which is nice because it doesn't fall out of the diaper and onto the floor.  It stays put on the diaper and the skin pretty well.  But if it does get onto something, its stickiness is less of an asset (nope.  pun absolutely ignored).  It sticks to hands, socks, knees, rugs, jeans, toys, books, couches, and pillows.

It's just such a tough choice.  Both kinds have their good points.

Can't wait to come over, can you?  I clean the floors and rugs regularly.  Lysol is my friend.  Come on by for visit.  Sit on the couch, hang out with me for awhile.  Just don't walk by the garbage can on your way in.

Don't you dare freaking say Jenny McCarthy.....

I love how you can say the most outrageous things and it's hilarious and not offensive, as long as you are a cartoon character.

Yesterday

It seems like things happen in waves.  Groups.  Like, I know three people pregnant and due in February.  I don't know anybody due in January or March or April.  Three in February.  Last year I knew two people who were due in October. 

Right now, it seems like I keep hearing about people getting divorced.  Some I know fairly well, some I don't really know at all, but for a few years I didn't hear about anyone getting divorced -- and now suddenly, people are splitting up everywhere.

So it seems especially important for me to comment on what happened yesterday.

January 5, 2002



Yesterday was Mark's and my 9th wedding anniversary.  We've been married for 9 years, 3 kids, 4 cars, and 2 houses.  They've flown by.  I know everybody thinks this, but.... little did we know, 9 years ago, what was in store for us.  And, perhaps that ignorance is a very good thing!

We barely have time to say good morning and good night, much less to stop and acknowledge our anniversary, but it's important to recognize that we are still a happy couple, despite having been through at least 3 of the top10 stressors in a marriage.  I definitely needed to stop and thank my husband for being supportive, flexible, and always, always loving.  I have never, ever had to wonder how he felt about me.  He is the greatest husband and father I know.  I am enormously blessed in the partner department!

I was so excited yesterday, to find our wedding video and show it to Aliza after the boys went to bed.  I dug around through all the stuff in the basement storage to find the box of VCR tapes that I knew was down there and finally found it.  I brought it upstairs, put it in the VCR (one of those that is built into the TV, that we haven't used in months, maybe years....) only to find, it doesn't work.  Hm.  Maybe that's why we stopped using it.

So now I have to have the VCR tape made into a DVD, I guess, if we want to see it. Until then we can just look at the pictures. 

But I'm glad we acknowledged it, and it would be easy to overlook our anniversary, sandwiched between Christmas and the kids' birthdays like it is.  It is an important day and thank you hon, for making sure our family celebrated it.  And thanks too, for the last 9 years.  Here's to 99 more.


Most of our wedding party, at our reception



Spelling -- What are these words?

Sometimes I'll look at Aliza's spelling pretest and try to figure out what the words are, based on how she guessed they were spelled.  Can you figure out what these are?

huged
sckped
sckping
sines

If you are thinking "scalped" and "scalping" for the middle two words, you are wrong, like I was.  I was quite relieved that they aren't teaching my daughter the proper spelling for "scalped."

Fragile X, Autism, and the Holidays

Today I'm happy to be participating in a blog hop on Adventures in Extreme Parenthood; Different but not Less.  If you don't know what a blog hop is, (I didn't, a few months ago) it's when a bunch of bloggers write on the same subject or theme, and then all those blogs are linked together so we can read each other's entries.  To see all the entries, click on this link and scroll to the bottom.  The theme of this one is:

How does your family celebrate the holidays?


What changes have you had to make due to raising children with special needs?

The way I see it, there's two ways to do the holidays with Fragile X/Autistic kids.  You can force them through the traditions and rituals that make it a "typical" holiday.  Force them to visit Santa.  Make them sit in a crowded room full of relatives and open presents in front of everyone.  Strap them to a chair so they'll sit at the table with the family for a nice Thanksgiving, or Christmas dinner.

In other words, try and force them to act like "typical" kids.

Or, you can relax on all the holiday customs and activities.   You can decide to spare your kids the whole Santa Experience.  Let them hide out in the other room during the present opening extravaganza.  Allow them to eat dinner at the small table in the kitchen.

We've done both.  The last couple of years I forced the boys to see Santa.  To sit for a picture with him.  I alternated between feeling like "this is hard, but good for them" and "this is totally not worth the agony."

This year we tried to find a happy medium.  We all went to see Santa, but the boys were allowed to hang around the outskirts of the Santa room, while Aliza had a nice visit with him.  As it turned out, AJ lingered sort of near Santa, while Zack stayed as far away as he could.  And it was okay.

As far as opening presents was concerned, we took a "wait and see" attitude, because last year we got both boys interested in actually opening presents for the first time.  This year AJ was all over opening presents.  He didn't care if they were for him or not.  He was happy to be ripping paper.

Zack didn't want much to do with the whole scene.  We tried to entice him with presents wrapped in Dora the Explorer wrapping paper.  We tried tearing off enough paper just to show him he would like what was inside.  But it didn't work on him.  He struggled mightily with the crowd of people, even though it was his own family, gathered around the tree.  So we let him go back downstairs.  No point in making him miserable.

We had an extended family gathering this weekend, and we planned ahead.  See the thing is, we know the boys will struggle with getting through it, but there's no way Aliza wants to leave early.  She has a good time with her cousins.  So, we went to this family gathering in two cars.

Both boys get pretty wild.  They run around the house from room to room, upstairs and downstairs, in the basement and kitchen, like wild animals desperate to escape a cage.  We brought the portable DVD player and some of their favorite movies, but they couldn't settle down.  So after chasing them around for about an hour and a half, I brought them home, where they could have their sandwiches and then have a bath and settle down before bedtime.  And this worked out perfectly.  The boys socialized just a little bit, all the family got to see them, and then they got to come home early, but Aliza didn't have to come home yet.

I say it worked out perfectly because this is what we planned.  Before we came with a plan, nothing worked out perfectly.  Either one of us drove around with the boys for awhile so that Aliza could stay, or we upset her by leaving earlier than she wanted to.  Neither situation is preferred.  A couple of years ago I'd get pretty sad that the boys couldn't handle social situations like other little kids.  But we have adapted to something that works for us.