The Fragile X Files

Vacay: Starting Summer with a Bang

noreply@blogger.com (Bonnie@TheFragileXFiles) — Wed, 30 May 2012 13:59:00 +0000

Sometimes it seems like the work involved in getting ready to go on vacation makes it almost not worth the trip. Not only do I have to get Mark, Aliza and I ready to go, I have to get the boys ready to stay home with their Grandpa. And an hour after our plane lands back in town next week, Aliza's due at her dance dress rehearsal. One hour. So I have to have all her costumes and tights and shoes and makeup and accessories assembled and ready to go now too. Then she has recitals all weekend. Then, six days later, AJ and I take off on a jet plane to the MIND Institute in Davis, CA to complete the second half of the word learning study.

So I'm a little bug-eyed and frazzled right now, making lists and crossing things off and worrying that I'll forget something. It's almost not worth it.

I'm sure I'll be singing another tune on Saturday, though, when I'm lounging in a beach chair, watching the waves roll into Galveston. In the back of my mind is the prize. I will miss my boys, but I can't wait to go spend a few days without them. To be able to actually pay attention to everything around me and take endless pictures, and not constantly have an eye and two hands tied up with the boys.

Potty training sucks. There's probably not a parent alive who wouldn't agree with me. No progress so far. I've gotten some great ideas though from a reader. We've been emailing back and forth and I am so grateful for the support and encouragement and advice, because yesterday, just for awhile, I really lost hope it'll ever happen. I'm posting her suggestions as comments on the post right before this one. Check it out. I'll post more about that later, when we find time to put the program in action.

Back to my list I go, but first, this cute (although grainy) picture of AJ:

AJ's one glove obsession continues. I'm going to find him a shiny, sparkly one and teach him to do the moonwalk.

My Manny's Take on the Potty Wars

noreply@blogger.com (Bonnie@TheFragileXFiles) — Fri, 25 May 2012 15:37:00 +0000

Potty training has been slow and without progress, mainly because we aren't consistent. We sit on the potty and try when we have time, but then when we have to go somewhere, which seems like it's all the time, we put on a pullup and off we go.

So this week Zack decided he's not liking the feel of a pullup with, shall we say, stuff in it. He takes it out. With his hands. He's done it every day for almost a week now. (Sorry for the TMI, but this is my life.) I will be horrified if he ever does that at school. Luckily, he usually doesn't do that at school at all. He holds it all day and saves it for home.

At our appointment with Dr. Berry-Kravis this week, she said that's his way of telling us - I need to be doing this on a potty!

Which, duh - we know.

So we decided to make some changes to our schedule, and we've quit Courage Center. For at least two weeks, we aren't going to have outside therapies, so that we can come home from school and sit on the potty until we see some action. I am just working on Zack right now. Because the last time I worked on them together, they ganged up on me. AJ sat on the potty and tried, and nothing happened, so he put on some Go Diego Go undies and went to the computer to wait for Zack to take a turn. While Zack was sitting, AJ peed. A gallon or so. While I cleaned up AJ's mess, Zack took it upon himself to get up off the potty and pee on the floor, too. I swear they plan these things.

So I'm letting AJ off the hook for awhile and focusing my efforts on Zack. When Zack finally does poop on the potty, I told him I'd get him a new episode of Super Why for the iPad. They are only $1.99. Then later it dawned on me that I'm setting an expensive precedent, if every poop is going to cost me $1.99.

I'm a little disappointed that my manny Ryan Gosling isn't really here to help me with this training, but alas, he is imaginary, and our training needs are very much not. When the poop is on the wall, it's time to crack down. I guess it's time to stop waiting for my Fairy Godmanny to show up and do the work.

Check out the other Special Needs Ryan Gosling entries here, at Adventures in Extreme Parenthood!

Baseball with the Miracle League

noreply@blogger.com (Bonnie@TheFragileXFiles) — Wed, 23 May 2012 16:53:00 +0000

Catching up on a few updates here...

The boys had their first baseball game with the Miracle League last Thursday. We found a brochure for this program for kids with special needs to play baseball at Courage Center where they have speech and occupational therapy, and we were excited to give it a try. The first game was kind of a disaster, but every single thing we do is a disaster, the first time. Remember Vacation Bible School, last summer? It took them a few days, but by the end of the week they were really getting into it.

They just need a few more weeks to get used to the baseball game routine, and then they will tolerate it much better. Who knows, maybe they'll even enjoy it!

As long as they let me wear my gray glove, I'll be okay.

Uh oh. Starting to be not so agreeable to this....

Yep, definitely going downhill....

What do you mean I have to stand here on base? What kind of sport is this? I want to run around!

As far back in the outfield as they could possibly get.

As it turns out, there is, in fact, a little crying in baseball.

It took both Mark and me all our attention and energy to keep the boys from abandoning their team and running for the hills, so Aliza took almost all the pictures. She did a great job! We rewarded her with a Sprite and a ring pop from the consession stand.

It was a little disheartening, to see how difficult it was for them, especially when all the other kids with special needs seemed to tolerate it a lot better than they did. I realize comparisons are useless, but I can't help but notice.

I think we are the family that everyone else looks to and thinks "wow, it could be a lot worse, look at them!" Yep. I think maybe our purpose is to make other families with special needs children feel better about their own situations.

I'm just glad we can be of service to others.....

But I plan for our boys to be the most improved of all the kids, too. Just give them a little more time.

What I've Been Doing

noreply@blogger.com (Bonnie@TheFragileXFiles) — Sat, 19 May 2012 15:30:00 +0000

Sorry I've been MIA lately. I've been working. Yep, got a part time job subbing in the school cafeterias. They can call me to work for any school in the district, and this past week I got to sub at Zack and AJ's school! I was tickled to get to see them at lunch.

They behaved exactly as I expected them to - that is, they looked at me like I was an alien. Because it's weird, seeing mom at school. Just like seeing a teacher at the store ... I was out of place, at their school.

Actually Zack smiled at me a little, and then I saw him turn to look up at his aid and say "my mom!" AJ, however, was pretty bothered.

They both got over it and didn't let it ruin their day, though.

It was so great to meet the cafeteria workers, because they knew who my boys were right away. When I said I was Zack and AJ's mom the lead cook said "oh, I know them! They like chicken!" Yes, that's all they serve at the school cafeteria that my guys will eat!

I met one of the janitors, and he lit up like a Christmas tree when I told him who my kids were.

"I love those guys! I always say hi to AJ, and then he ducks his head down real shy-like, and starts to walk away, but then he'll look over his shoulder at me and say 'HI!' "

Isn't that awesome? When it was my last day this week, I was sad to go, but the caf ladies said they'd watch my boys for me. It takes a village, and I am loving my villagers!

I've also been busy with another creative endeavor - I'm writing that book people have been telling me to write. So that's where most of my of my prose is going, lately.

I don't promise it'll be done soon. Actually I don't promise it'll be done ever. But I'm trying to focus on it as much as I can because it's something I have always wanted to do, and if I don't do it, it'll be my biggest regret, because the only thing that has kept me from doing it is laziness. And maybe a little ADD, which I can blame on the Fragile X gene. But I'm not going to use that as an excuse anymore. So I've cracked down and gotten started. I'm about 13,000 words in so far, around 48 pages!

I would equate the writing process to having the flu. Writing is like throwing up. It's painful but you can't not do it, it just has to come out of you. And you feel so much better after you get it out.

I'll try to do a better job of keeping this updated.... Please send me productive vibes!

- Posted using BlogPress from my iPad

Bottle Battles and the Potty War

noreply@blogger.com (Bonnie@TheFragileXFiles) — Mon, 14 May 2012 14:32:00 +0000

Come on, tell me that's not the best titled post I've ever had?! A totally typical mommy blogger title (from this very nontypical mommy blogger).

We have completely, undeniably, utterly won the bottle battle. Zack drinks from a Nuby sippy cup (and no other kinds) regularly, and bottles are history. This is a HUGE step forward. I didn't have a lot of faith it was going to happen, and thanks to the unwavering support of the teachers at school, therapists at Courage Center, and Mark, we made it. I don't give myself credit at all, because I alone could never have done it. I'd have someday in the future had a 6'5" 20 something-year-old drinking from a baby bottle. And you, you bunch of wonderful, supportive, loving friends and family, you wouldn't have even blamed me, I bet. But I'm telling you here and now officially -- the only credit I deserve for the bottle banishment is setting a date to begin the battle, and organizing and educating the troops. After that I sort of just sat back and watched it happen, because I worried that if it were just up to me, the screaming and crying would have broken me down very quickly. I knew where the weak link was.

Oh, he still asks for applesauce. But I make him drink a whole bunch from a sippy cup first, and he does it. And he doesn't even mind.

Yay, I did it!

I hope the potty war goes just as smoothly.

We have begun that in earnest, although this past weekend we didn't have a lot of time to work on it.

They are so very pull-up trained. They know just how to wait until they have a pull up on, to go. At school, they wanted to know what we could offer them, if and when (don't you love my faith in success here? "If") they went in the potty. What would they just LOVE, what would make them want to go in the potty again, to get that prize again?

Well, there just aren't that many things we can work with here. I'm using the iPad just to get them on the potty in the first place. So here's the plan: we are going to take away their two favorite foods, right now. Zack gets no more Honeycomb. AJ gets no more Doritos. Until they have a success on the potty. Hopefully then they will think, "Oh, that's what I have to do to get more of these!"

The biggest hurdle is going to be consistency. We are busy after school and most evenings, so it will be hard to push them day to day, and not give them time off to just wear the pull ups.

There's next week, for example. We have another trip to Chicago. And I'm not putting them on gas station potties. Yucko. Yes, I know they will have to be able to use them eventually, but we aren't going to train on them.

We will just have to work it hard, whenever we can.

On Being Nonverbal

noreply@blogger.com (Bonnie@TheFragileXFiles) — Thu, 10 May 2012 14:28:00 +0000

Verbility (yes, I made up that word. Spellcheck is about to explode, it hates it so much.) is gray.

It's not "yes or "no." One doesn't suddenly, one day, develop the ability to talk and then graduate to the state of being "verbal." It's a very gradual process during which there are moments when you seem completely able to express yourself, and words are leaping out of you as if they've finally broken through a wall, and other moments when you are so silent and unresponsive, it's as if you've never spoken one word, and never will.

Watch it, kitty. I'll bop you right on the head with my monkey. I'm not afraid of you. Much.

Becoming verbal is a frustrating road full of speed bumps, blind crossings, and construction - lots of construction.

No one explained this to me, back when I was hoping, praying desperately, for just one identifiable word to escape their mouths. We got a word - "mom" - when they were 4, and I immediately leapt off the nonverbal train to grab onto the verbal one. Because that's where we were, now.

So I feel guilty being frustrated that I still can't understand a lot of what they say, now at the age of 7. Especially Zack. He murmurs things and I try so hard to figure out what he's saying. Because I'm really his best hope. I spend the most time with him, I listen to him the most. Of everyone he knows, I'm probably the most likely to be able to understand him.

So if I want others to understand him, and for him to really, truly, graduate to being considered "verbal" by regular people, I need to work on his clarity. And I need for him to speak in sentences. It's not good enough that when he says "mmmahkit," that I understand he wants the Team Umizoomi episode "Trip to the Supermarket." He needs to be able to say the whole name of the show.

And both boys needs to get over their slight issue with public and nonfamiliar people mutism. That is, they don't talk much, if at all, around people they don't know well and in unfamiliar places. It's hard to convince people, like doctors and therapists, that they can actually speak, when nobody but family ever gets to hear it.

Well, we're on the verbal road, I guess, and I'll just have to make sure I have good shock absorbers.

A Most Excellent Quote

noreply@blogger.com (Bonnie@TheFragileXFiles) — Mon, 07 May 2012 13:20:00 +0000

"The plain fact is that the world does not need more successful people, but it does desperately need more peacemakers, healers, restorers, storytellers, and lovers of every kind. It needs people who live well in their places. It needs people of moral courage willing to join the fight to make the world habitable and humane. And these qualities have little to do with success as our culture has defined it."
~David Orr

Pool Time with Ryan Gosling - Our (Imaginary) Manny

noreply@blogger.com (Bonnie@TheFragileXFiles) — Fri, 04 May 2012 14:42:00 +0000

Summer is almost here. The humidity creeped in yesterday and I almost turned on the AC.

Bring on the parks. Prepare the monkey bars, the rock walls, the swings and the slides. We've saved up our energy all winter and we're ready to hit it hard! (Side note - has anyone else noticed that although parks rarely have teeter totters anymore, those street signs indicating a park is nearby still show a tetter totter? Weird.)

We need to take this craziness outside!

That waterslide was a lot faster than I thought it would be! I don't think I was ready for that!

It IS a bit of an extreme sensory experience.

But I LOVE it!

Ryan Gosling is checking out the pool to make sure it's all ready. You know - the imaginary pool in our backyard. (Hey, if I can have Ryan as my imaginary manny, I can have an imaginary swimming pool in my backyard. There's an imaginary waterslide off to the left here, that you can't see in the picture.)

Check out the other entries at Adventures in Extreme Parenthood!

Books about Fragile X

noreply@blogger.com (Bonnie@TheFragileXFiles) — Fri, 04 May 2012 00:57:00 +0000

I just realized that I've had this book for over a year, and I haven't read it yet, and I'm ashamed. I'm working on my own family story about Fragile X, and I haven't even read all the ones that are right in my own collection!

It's called "Spelling Love with an X" by Clare Dunsford, and if you haven't read it you should because I'm only on page 28 and it's already made me cry once and made me think of things I want to write about six times.

The boys' bus driver asked me what book she should read, if she wanted to know more about Fragile X. I gave her "X Stories: The Personal Side of Fragile X Syndrome." I read it shortly after the boys' were diagnosed, and it horrified me. I don't think I was ready for it. It's a whole lot of realism.

That was 6 years ago though, I think I'll have to try reading it again.

What's your favorite special-needs themed book?

The Bottle is Banished!

noreply@blogger.com (Bonnie@TheFragileXFiles) — Tue, 01 May 2012 01:25:00 +0000

Zack's made a lot of progress in overcoming his little drinking problem. It hasn't been easy. He's had a few setbacks, but he never fell completely off the wagon.

He's eaten a couple of quarts of applesauce, drank a few cups of bathwater, and discovered that if he dips his monkey toy under the running faucet he can lick the water off it.

Saturday and Sunday night, Mark sat with Zack for over an hour, prompting and encouraging and cajoling him into drinking from the sippy cup. Over and over and over, Zack raised it to his lips and pretended to suck on it. And after awhile, he wasn't pretending anymore. He drank just a few tablespoons of juice out of the sippy cup and we were ecstatic. I emailed his teacher and told him to work him today.

And today after school, Zack came home and picked up his sippy cup of milk, and with just a tiny bit of encouragement from me, drank the WHOLE DARN THING!

Then he ate some more applesauce.

A couple of hours later, he picked up a sippy cup of juice and again, drank it all. Followed by another halfhearted request for applesauce.

The war is nearly over. And we've won. All of us. Zack too. Bottles will never be in this house again! (Unless, you know, a friend with a baby visits.)

Banishing the Bottle - Progress!

noreply@blogger.com (Bonnie@TheFragileXFiles) — Sat, 28 Apr 2012 17:49:00 +0000

He's clearly just humoring me here, and not really drinking, but at least he's not screaming and pushing it away.

I wish I had video of him when he lifts his shoulders to take a big, huge, dramatic, fake gulp, and then he smiles at me and rubs his tummy and says "yum."

What does it feel like to have Fragile X?

noreply@blogger.com (Bonnie@TheFragileXFiles) — Thu, 26 Apr 2012 14:35:00 +0000

A couple of weeks ago, while Mark and the boys and I were in Chicago, Grandma and Grandpa stayed home with Aliza. As is our usual routine, whoever stays home with Aliza takes advantage of the time alone with her to do lots of special things. This time, one of those special things was to take her out to lunch at the American Girl Bistro in the Mall of America.

To prompt conversation while waiting for your meals to arrive, they have questions on cards at every table. One of the questions at the table my parents and Aliza sat at was,

"If you could trade places with anyone for 30 days, who would it be, and why?"

Aliza pondered it for a few moments, and replied that she'd like to trade places with AJ.

"To see what it feels like to have Fragile X."

There she goes again - blowing me away with her incredible attitude and sensitivity.

I almost can't stand how amazing she is. She doesn't want to be a movie star or a rock star, or a super rich person. She wants to know what life feels like for her brothers.

She slays me.

Grandpa, Grandma, and all their grandkids.

The Battle of the Bottle, Part II

noreply@blogger.com (Bonnie@TheFragileXFiles) — Wed, 25 Apr 2012 01:10:00 +0000

We've decided to get down to business, and crack down on our bottle habit. We are 7 years old, and bottles should have no place in our lives.

Zack is not accepting it all that well.

AJ is having a lot of sympathy pains. He keeps coming over to rub Zack's back. Then he looks at me and says "good boy." I'm forever being prompted by these boys. I'm not sure who is raising whom, some days.

I've put away the bottles, which is good, because Mark can't break down and give one to him. And bad, because I know where they are, if I'm the one who breaks down. I know, I know, I should throw them away and get them completely out of the house so it's not even an option to break down. It's a crutch, though. I will be as strong as I can be, but I don't know what's going to happen. I can't throw away the crutch. Yet.

We will see how the next few days go.

Zack has been carrying on with the pink shirt, as usual.

Today at school a little girl in Zack's class was wearing a brightly colored shirt, with butterflies on it. Apparently Zack followed her around like a little puppy at recess. Kept trying to touch her shirt. The teacher explained to the girl that Zack's sister had a shirt just like it, She said it was very cute and the girl was a good sport about it. I hope so. I hope it wasn't creepy. Here at home, or in our neighborhood, with people he knows well, it's cute. I hope it didn't make the girl think he was weird.

AJ and one of the little neighbor boys had some bubbles as an appetizer before dinner tonight.

HE did it!

noreply@blogger.com (Bonnie@TheFragileXFiles) — Fri, 20 Apr 2012 15:34:00 +0000

One of the down sides of having siblings with developmental delays is that it's tougher for you to get in trouble and then blame them for what you did. Just ask Aliza.

This past week, we had one day of beautiful weather. After school, a bunch of the neighborhood kids came over to play in the backyard, and both boys played outside with all the kids. It was a great day.

Some of the time they were all jumping on the trampoline. Some of the time the girls were busy in the little red tent.

AJ hung out with them in the tent a little bit, but mostly just to periodically ask them

"Jump?"

He does loving jumping with those girls. They were busy, though, making a house, or a store, or a school, or who-knows-what out of the tent. Several items from the house came outside to help create the scene, including some shoes, a couple of books, and some toilet paper.

I didn't notice.

They did not make it back into the house at bedtime. And that night, it rained.

When I asked Aliza who brought those things outside and forgot to bring them back in, she shrugged.

"Are you suggesting it might have been one of the neighbor kids?" I asked her.

"No. Maybe it was AJ." She replied (lied to my face).

I can see what she was thinking. He is her best shot. He was hanging out with them in the tent for awhile. But no, I doubt the kid who isn't potty trained and has never willingly walked into the bathroom (unless Zack is in there sitting on the potty, and AJ wants to just see what's going on), gathered up the toilet paper and brought it out to the tent.

Now if it was a DVD, or a sippy cup, or Zack's pink shirt, that would be a different story.

I like how she's thinking though. I like that she is beginning to think it's possible that I'll believe AJ did something like that.

Wordless Wednesday

noreply@blogger.com (Bonnie@TheFragileXFiles) — Wed, 18 Apr 2012 13:29:00 +0000

They don't usually sit together on the bus, but sometimes circumstances necessitate change. They didn't mind.

Why I'd Never Make It on Dance Moms

noreply@blogger.com (Bonnie@TheFragileXFiles) — Mon, 16 Apr 2012 20:09:00 +0000

See that cute kid in the white t-shirt, second from the right?

That's my baby up on stage, accepting an award with the whole dance team!

They were first in their category (I think it was called Advanced Production), and first overall winners!

They got Double Platinum!

Do you know what this means? Because I don't. I'm not down with the dance-award lingo. Apparently Double Platinum is better than Single Platinum, but not as good as Crystal. And Gold -- don't get me started. Gold is crap, apparently.

(See, it's not like the Olympics, where everyone knows it goes Bronze, Silver, and Gold. Gold is a dance award level, but it's like 3rd or 4th or something. Tell Aliza you got Gold in dance, and she'll be all "yeah, whatever, that's not very good." And I think there's a Silver dance level, but not a Bronze. It's quite complex.)

This was the first of three dance competitions Aliza has this spring. She was magnificent, graceful, poised, elegant, and very hip. She had moves like Jagger. As for my performance as a dance mom - I don't think I'd have even gotten a Gold.

For example, a week ago I'd never heard the phrase "hair donuts," and this weekend I had to do them twice. A hair donut is a soft, donut-shaped thingy you slip over a ponytail and then wrap the hair around, to make a hair bun look huge.

It sounds simple enough, and I watched a You Tube tutorial so I'd know how to make them, but I had a hard time getting all the hair in nice and tight. About half the hairs on her head didn't want to cooperate. One of the teachers was helping me, and then she just sort of took over (and I let her), because I wasn't doing it right. Fail.

Then there was the fake eyelashes. Every time I did it, I didn't get the fake ones close enough to the real ones, and she'd open her eyes and have two, distinct levels of eyelashes on her upper lid. I couldn't get them close enough. So another, more experienced dance mom helped us with that.

Maybe by the time competition season ends, I'll have these things down, and I'll know what it means when someone gets Crystal. That's really good, from what I understand.

Zack and AJ went to see their sister's dances both on Saturday and on Sunday. It wasn't their favorite place to be, but they both stayed in the crowded auditorium full of screaming dancers for a very short time, and neither had a meltdown. That, to us, translates into success. I do think I'm going to look into getting some noise-cancelling headphones for Zack. He has his fingers in his ears more and more, it seems.

How much is too much? Ryan knows.

noreply@blogger.com (Bonnie@TheFragileXFiles) — Fri, 13 Apr 2012 14:03:00 +0000

I am wondering lately whether we are doing too much. This is the boys' weekly schedule.

School 5 days a week (usually, anyway. It seems like there are so many late-start days, professional days, holidays, conference days, and random-for-no-good-reason days off school lately)
Courage Center for speech and occupational therapy 3 days a week.

Okay so it doesn't make an impressive bullet list. Only two things. But it leaves them very, very little time left for just hanging out. I haven't given them a lot of free time in the past because they didn't do constructive, educational, developmentally appropriate things with their free time. They didn't play, like other kids.

If all they were going to do was yell and stim in front of the TV or computer for hours -- well, I wasn't going to give them a lot of time to do that. So I filled their schedules with beneficial things.

The past couple of weeks though I find myself being relieved whenever we could cancel one of their appointments. And I think the boys feel the same way. Last night at Courage Center, while waiting his turn for occupational therapy, instead of playing his favorite games on the iPad, AJ climbed into my lap and put his head on my shoulder. His therapist reported that he wasn't terribly cooperative. He sat or stood in the corner a lot and didn't liven up until she said he could be all done, and go back out to his mom.

And you remember how Zack was on Monday. He was very overstimulated when we left.

I wonder if I should be giving them more time to themselves. My manny, Ryan Gosling, is thinking the same thing.

See the other Special Needs Ryan Gosling photos over here at Adventures in Extreme Parenthood, written by the girl with the most fun name ever, Sunday Stilwell. You can also find them by hunting for the Twitter hashtag #SNRyanGosling. And thanks to Ryan for being such a good sport. Not that there's anything he could do about this.

Anxiety on the Rocks

noreply@blogger.com (Bonnie@TheFragileXFiles) — Mon, 09 Apr 2012 23:02:00 +0000

Shaken, not stirred. That's how I like my anxiety.

The boys have developed a new way to express their anxiety. They've always been calmed by counting, but lately when stressed, the two of them will shout "nine, TEN!" Over and over. "nine, TEN! nine, TEN! nine, TEN! nine, TEN! nine, TEN! nine, TEN! nine, TEN! nine, TEN! nine, TEN! nine, TEN! nine, TEN! nine, TEN! nine, TEN! nine, TEN! nine, TEN! nine, TEN! nine, TEN!"

Out and about, people tend to notice the kids who shout out two numbers much moreso than they noticed two kids who randomly counted things. Not that I care what people think.

Otherwise, they still let it out in their usual ways; AJ cries and chews on his clothes, and Zack pinches people and screams.

Today after school we had speech and occupational therapy at Courage Center. It's kind of a long day for them, but they are usually up for it.

When they were all done with therapy, they come to me in the busy waiting room, ready to go. Zack needs to go right then -- he's got no patience for my chatting with the therapists, getting the lowdown on how they performed. He is not interested in stopping in the waiting room for even a second. He barrels right on out, unless I hold him back. Then he starts in on the therapist. The poor woman, who only moments ago he was having a great time with, is now the target of his aggression. He reaches to pinch, we both tell him no, to be gentle....

Anyway, this was the scene today, too. Both boys started for the door in front of me while I said goodbye to the therapists, and another boy in the waiting room, who was there for therapy (and who I'm guessing has autism), suddenly screamed when Zack walked past him "HEY! THAT KID PINCHED ME! REALLY HARD ON PURPOSE!"

Time stopped, while everyone stopped what they were doing to look over. Zack started to scream and cry. AJ backed against the door.

And it's not like this has never happened before. Actually, this happens way too often. How come every time, though, I totally can't remember how to handle it? I have rehearsed this in my mind and in real life. It happens. Zack pinches and sometimes bites kids. But I still I stopped for a minute, not sure what to do. The kid's mom told him she was sure Zack didn't mean to hurt him. The kid continued to holler. "YES HE DID! HE PINCHED ME ON PURPOSE!"

I told the kid I was sorry too, and that Zack gets really really nervous around people. I told Zack "Zack, say 'I'm sorry.'" And then I said a superquick silent prayer, because you never know if Zack is going to say what you tell him to say. PleasesaysorryZackpleasepleasepleasesaysorry.

And he did. "Sowy." And then he cried. On the way out to the car, Zack got over it and stopped crying and screaming, and AJ started to cry. AJ cried for about 45 minutes. He was really upset about the whole thing.

Anyway, you see what I mean (in the post before this one), when I said I wished for a little more from this medication that is supposed to help with social anxiety? I can't take Zack anywhere without it ramping up anxiety for all of us, because you just never know how he's going to do.

And I can't help but think about the fact that we just increased the dosage for both boys, and the last time we increased their dosages, AJ cried all the time, and Zack became a lot more aggressive.

It's too soon to draw those conclusions, but it is on my mind. Sigh.

And now I will wrap up this stressful and unhappy post with a couple of cute swimming pictures, so it's not all doom and gloom.

High Expectations

noreply@blogger.com (Bonnie@TheFragileXFiles) — Fri, 06 Apr 2012 12:35:00 +0000

I had 'em. I expected STX209 to really turn the boys' lives around. I expected earth-shattering new awareness and interests. I knew it wasn't a cure. But I expected more, I guess.

We have an appointment this afternoon with Dr. EBK in Chicago to review how it's going, and always before an appointment I spend a lot of time thinking about what I'm going to report.

They both are doing well in school, Zack even moreso than AJ. Zack concentrates and pays attention and usually is able to control his body so well at school. But then back at home, he really retreats into his own world of videos and the iPad. Neighborhood kids come over to play, and Zack couldn't care less. He wants to be left alone to snuggle in his favorite pink shirt and watch Super Why on as many screens as he can get (he's happiest if he's got it on the TV, the computer and the iPad at the same time).

AJ has a tougher time controlling himself at school. He will jump up and bolt from the room during circle time. He is whiny and unhappy often. At home, he's a little ball of sunshine. He's filled with joy when the kids come over. He could run around with Aliza and the kids from our street all day, and the kids are really friendly to him. It's absolutely thrilling to see.

He does get whiny and anxious at home too, though. He doesn't have much of an appetite, and the size difference between the boys is more and more apparent. Zack is a pretty good eater, and is strong and basically filled-out. AJ is skin and bones. Almost every meal, I have to encourage bite after bite. He doesn't consume near enough calories to keep up with his activity level.

Both of them still show quite a bit of anxiety. They both need a chewy in their mouths for a large part of the day, and they both do this nervous self-talk constantly.

I don't want to seem ungrateful for the opportunity. It's just that I thought we'd be past some of these things by now.

My parents recently returned from 12 weeks away at their place in Galveston. We all expected they'd see major changes in the boys' behaviors, having been away for so long, but my dad admits the changes are pretty subtle, if they exist at all.

I feel bad complaining about the lack of "WOW" we've experienced. I'm glad we took part in the trial. But I have to be truthful. I'm a little discouraged at our lack of progress.

(Trying to get to sleep last night.)

My 2 in 88

noreply@blogger.com (Bonnie@TheFragileXFiles) — Mon, 02 Apr 2012 14:33:00 +0000

Unless you live under a rock (or just aren't as immersed in the special needs world as I am), you heard that the CDC said last week that 1 in 88 children today is diagnosed with autism.

Here's another stat for you: 1 out of 3 children with Fragile X is diagnosed with autism.

In honor of World Autism Awareness Day and Light It Up Blue, Zack and AJ are wearing their "Got Fragile X?" t-shirts today, which, appropriately, are blue.

It took Zack about 20 seconds to lose his socks this morning.

I got AJ to look at me and give me a half smile by singing one of his new favorite songs, from Bubble Guppies - "What time is it? It's time for lunch!"

Do we really need more autism awareness? This may be another case of my being biased because of being so immersed in the special needs world, but who hasn't heard of autism? Anybody who hasn't heard of it probably isn't traveling in the circles of people who will be talking about it today.

We definitely need more public knowledge and acceptance, though.

We're here.

We're at least 1 in 88 people.

We're quirky, and we're not going anywhere.

Get used to us!

My Manny, Ryan Gosling

noreply@blogger.com (Bonnie@TheFragileXFiles) — Sun, 01 Apr 2012 13:38:00 +0000

Some of you may recall that about a week ago (in my dreams), I hired Ryan Gosling to work as a manny for my kids. Ryan has been working out great. He is great with the kids and they love him. He's incredibly attuned to my needs too. I just wonder where he got all his knowledge about children with special needs. He's so well rounded. There's just nothing he can't do.

Go see the rest of the Special Needs Ryan Gosling submissions at Adventures in Extreme Parenthood..... This is something she does every Friday, and as usual, I'm running a bit behind. I figure, as long as the link hasn't closed and I can still add mine to the list, it's not too late. Right?

Spring Break - the last day

noreply@blogger.com (Bonnie@TheFragileXFiles) — Fri, 30 Mar 2012 20:19:00 +0000

We are lucky enough to be having a spring break where it actually feels like spring. As I mentioned yesterday, Aliza and a neighborhood friend just held their first lemonade stand of the year. I told the girls that a good rule of thumb is, if you still need a jacket to be outside, it's probably too cool yet for a lemonade stand. They respectfully disagreed.

Then they played on the trampoline. Half the time they aren't even jumping, they just like hanging out in there.

And AJ loves hanging out in there with them. It makes me so happy to see him out there playing with Aliza and the neighbor kids. Well, sometimes he's just playing alongside them, but he always wants to be where they are. They played Ring Around the Rosy. AJ doesn't fall down when "they all fall down," but he's good at the bouncing-around-in-a-circle part of the song.

Zack, on the other hand, would stay in the house by himself in his pink shirt watching "Super Why" all day long, if I'd let him. He has no social inclincations whatsoever. Every single social interaction is stressful for him.

We have an appointment in Chicago next week to talk about how the boys are doing on the trial medication. I wonder if we should increase Zack's dosage.

I do think he's doing better socially than he was a year ago. But most of the time Zack still chooses to be alone. When I encourage (force) him to be social, it's clearly pretty stressful for him.

The only thing that could make this more fun is if he had a clear butcket on his head. Now, that's more like it!

It's the last day of spring break. We've had a pretty good week, but I think we are all ready to go back to something resembling normal.

She Even Wrote in Fragile X - Teal

noreply@blogger.com (Bonnie@TheFragileXFiles) — Thu, 29 Mar 2012 22:07:00 +0000

Aliza and a couple of neighbor kids had a lemonade stand this afternoon. This was their sign. I think it's a little expensive for an XL size. The Meiudem is just about right.

But I love how they put "N" in parentheses under their fancy "N" in case people didn't get it.

They made $1.53 in tips for Fragile X! *smile*

Potty Training - An Update, Replete with TMI

noreply@blogger.com (Bonnie@TheFragileXFiles) — Wed, 28 Mar 2012 03:07:00 +0000

Heres how it went.

For an hour and a half yesterday morning, both boys wore underwear. AJ was fine with it. Zack did NOT want to wear it. He postponed putting them on for several minutes by choosing one pair, then changing his mind and choosing another pair, then changing his mind again. I let him get away with that for about 85 seconds, and then I chose some for him.

In the course of that hour and a half both of them took turns sitting on the porcelain throne. They sat and played with the iPad. For almost the whole 90 minutes, nobody did anything in the bathroom except play.

Then AJ peed in his pants, right after coming out of the bathroom. While I was cleaning him up, Zack peed. While I cleaned Zack up, AJ peed again, and this time when I took his pants off of him, poop fell out. Getting down on the floor to clean that up I noticed some more poop under the table. That one was from the cat though.

So by 10 AM, I'd had enough.

We're going to try again tomorrow. Maybe an afternoon will be better. I don't know.

Potty Training Confessional

noreply@blogger.com (Bonnie@TheFragileXFiles) — Mon, 26 Mar 2012 01:49:00 +0000

People are forever telling me what a great mom I am. I always feel guilty when I hear it, because the truth is, I'm a huge slacker.

My boys aren't potty trained, and you might think that's because they have Fragile X Syndrome, but that's not the whole of it. They aren't potty trained because I haven't really worked at it.

You might recall (or, more likely, this post will have the same labels as the previous potty training posts, therefore linking them at the bottom here) that awhile back we tried a hardcore potty training program with our ABA therapists.

It did not go well. Zack and I both decided that we weren't ready for that.

Fast forward almost two years though, and the boys are getting so ... big. We better get ready, because time is flying. And our ABA therapists are gone. Nobody is around to do this now, but me.

Aliza was so easy to train, you see, because her daycare provider did it. And if you are reading this, thank you, Jessica, I'm forever in your debt. Now will you come over and train the boys?

It's not that I don't know what to do. When someone in the Fragile X group on Facebook recently asked a question about potty training, I had a great suggestion for her. I'm very helpful and knowledgeable when it comes to what other people should do. Not so good at following my own advice, I guess.

So. Tomorrow morning (the first day of spring break) we are putting on underwear, and then sitting on the potty as much as possible. I know they like the comfort of the pull up. I also know they do have the self control to hold it and not go in their underwear. And I'm going to bet a lot of iPad time that I can get them to use the potty the way it was meant to be used. At least I'm going to try.

Wish us luck.