It's the Most Germiest Time of the Year

Our kids hardly ever get sick.  I'm not trying to brag, I'm just stating the fact.  So it's weird that we've been to see the doctor twice this month.

A couple of weeks ago Aliza woke up in the middle of the night with a sore ear.  She had been coughing for a couple of weeks before that so it makes sense an ear infection would follow.  So off we went to the doctor for an ear check.

I'm anxious not to be one of those moms who runs in to the doctor every time one of the kids sneezes.  I consider it a huge faux pas if I have to hear "all the tests are negative.  It's just a virus, nothing we can do about it."  I hate viruses for their ambiguity and indestructability.  They show, up, dance around your kid's system, causing all sorts of havoc, and there's absolutely nothing you can do but wait until they get tired and die.

It feels like a failure to hear "virus."  Because if I go to the trouble of setting up an appointment and pulling a kid out of school or therapy to see a doctor, I want there to be a bona-fide, clear cut reason for our visit.  Not to mention an antibiotic, or some plan of attack.  "Go home, rest, get lots of fluids"..... I don't need a doctor or a $20 copay to tell me that.  I bring my kid home with my head hanging in shame.

So this is why it feels like a small victory when the cause of the trouble actually is something with a name.

A couple of weeks ago Aliza went to the doctor with one sore ear.  We left with a diagnosis of two infected ears and walking pneumonia.  I held my head high.

(Now I should point out here, she felt fine.  That is, until she heard the doctor say the words "walking pneumonia".  Then she started suffering outwardly.  She slouched and assumed the "I don't feel good" look.)

After this past holiday weekend all the kids seemed fine and I rejoiced, anticipating getting back to our school/therapy/give-mom-a-break routine.  I had my all-the-kids-are-at-school-and-I'm-home-alone party for about a half hour yesterday, until the boys' school called.  AJ had a rash on his left forearm, they wondered if I'd seen it. I had not. 

And I always feel bad when one of the kids has a bruise or scratch or mark of some kind I haven't seen, but let's face it, there are three of them, one of me, only about 6 hours of daylight per day right now, and none of the kids are very anxious to undergo full body searches.  So it happens.

But this rash -- it looked kind of bad.  I was surprised they were so casual about it on the phone.

So off we went back to the doctor.  I explained the whole Fragile x-autism situation to the nurse and then again to the doctor, because I'm pretty sure the whole "this-kid-will-fight-an-exam-like-a-rabid-dog" behavior is not listed in his file.  They took it in stride pretty well.

She tested him for strep.  I didn't know a rash could indicate strep, but apparently it's one of the many signs.  He was positive.  Another kid on antibiotics.

The good news -- he feels fine too.  And both of them are loving the sweet, cherry-flavored antibiotics.   Lucky them.

Why I Know the Mall of America Santa is the Real Santa

He is adorable!

No, that's not it. He's all things a Santa should be. He's jolly and friendly, great with kids, rosy cheeked with a twinkle in his eye. But there's more. When he is with your kids, talking to them and talking to you, you can tell that he knows he is Santa.

There's also the odd fact that in all the years I've seen him at the Mall, it doesn't seem like he's aged a day.

But here's why I know he is the real Santa Claus.  Last year Santa made me cry - in a good way.

We have taken the kids to see Santa almost every year. At the Mall of America Santa is very popular, so you have to make an appointment to visit, which works out nicely because then you don't end up waiting in line very long. Still, waiting even a few minutes is hard for Fragile X kids. (FX and autism moms, let's all nod together.....)

So we waited and we saw Santa. He's in a little cubicle area so you can only see him as you round the corner, after waiting in a short line. It's crowded with books, toys, a Christmas tree, a big puffy chair for Santa to sit in, and it is brightly lit as there are elves and helpers who take pictures and video, while you and your children visit with Santa.

Aliza talked to him first while we worked on getting the boys to at least sit down next to Santa's big puffy chair. Santa got down on the floor then and talked to the boys, tried to ask their names, but they were anxious and upset and wanted nothing to do with him.  I sat down with them so they wouldn't take off.  AJ tugged on his beard a bit, but mostly he just wanted to leave.

Santa asked AJ what he wanted for Christmas, and I told Santa the boys were nonverbal (which they were more or less, a year ago) but that Aliza was going to tell him what her brothers wanted.  She was very starstruck, but she managed to remember to say they wanted a train.

Anyway when our Santa Experience was over, we struggled with ferociously overstimulated boys, getting them settled back down in the stroller so Mark could take them for a walk through the mall and calm them down. This took several minutes, during which time Aliza stood by waiting for us. This is nothing new for her. But Santa saw her watching, and waiting.  While I was strapping one of the boys down in the stroller I glanced back, and she was back sitting on Santa's lap.  It looked like they were having an intent conversation.

Once we got the boys settled, we headed out to the lobby to look at our pictures and see if any of them turned out at all. Mark and I were pretty stressed over how uncooperative the boys were -- well, at least I was. The whole time they were yelling and struggling to get away and I was struggling to hold them down and comfort them, I was very conscious of everyone else watching us.

A few moments later, Mark had taken the boys out into the mall hallway to walk them and Aliza and I were at the counter to pay for our pictures. I looked back to make sure Aliza was right behind me, and saw that Santa had come out of his little cubicle and was standing there with one arm around her, bent over, talking to her as if he was telling her a big secret. Her eyes were like saucers. Then Santa looked up at me and smiled and said "She's a good helper, isn't she? She's a very good big sister."

He looked so out of place out there in the lobby -- it's all regular people out there, hustling and bustling, and he's such a huge, colorful, shining character.....and he came out especially to talk to Aliza. I said "she sure is a good girl."

And I was so touched at how he came out of his designated Santa-area just to talk to her and let her know how special she was, that I nearly bawled. And now, a year later, I nearly bawl just telling the story. She asked for an American Girl doll last year, and I wanted to buy her a bunch of them.  I wanted her to get everything she told Santa she wanted, tenfold.

He is the real Santa.  Aliza knows it too.

Long Weekend

This is a long weekend for us, both in the sense that it spans 4 days, and that it drags on and on.  We try to enjoy family time but it's so hard for the boys not to have their school/therapy routine.  We try not to let them bounce around in front of The Wiggles and the Wonder Pets all day long.  I keep wanting to write thoughtful, sweet and funny blog posts but can't get even a few minutes of uninterrupted time in front of the computer.

The places we always go are probably the worst places we could possibly take them to this weekend; Target and the mall.  We did go through Target briefly yesterday and they seemed okay, but I wouldn't want to wander around there too much.

Yesterday Aliza demanded that we put up a few Christmas decorations.  She dressed for the occasion.  I can put up Christmas decorations in sweatpants and feel just as merry, but Aliza needed a Christmas dress.

AJ ignored us while we unpacked Christmas bins, but Zack decided he really liked this snowman my grandma made.  He might love it to pieces, we'll watch him with it, but I know his great-grandma would love that he loves it.

Tomorrow we visit Santa.

One thing that is greatly underappreciated about this time of year in Minnesota....

Your backyard is your refrigerator.  Or your freezer, depending on what month it is.

If biting your bottom lip counted as smiling, this might be a great holiday photo.

Happy Thanksgiving!

"Good job, buddy!"

This is what AJ heard repeatedly the past couple of days as he participated in the Project on Early Word Learning in FXS and autism at the Waisman Center.  All weekend, while at the Waisman, at the hotel, in the pool, at McDonald's, he repeated told himself, me, and anyone else who might have been paying attention, "good job buddy!"
And he DID do a good job!

Really he did.  The researcher who interviewed me said they got a lot of great data from him.  We got done early every day, as he was more cooperative than a lot of kids, I guess.  I thought he might be, because a lot of the things they asked him to do are very similar to the activities he performs in his ABA therapy every day.

Guess what?  He cooperated for the hearing test.  Apparently the way it works is, they put up a picture of a rabbit on one side of the room and a dog on the other side.  AJ sat in the middle. Then there was a squeeking sound coming from the side where the rabbit was, and he looked toward the rabbit.  (I did wonder to myself, do rabbits squeek?  Maybe people who know rabbits know these things. Anyway, AJ knew that they squeek.  Or maybe he just turned in the direction of the sound and thought the same thing I did -- do rabbits squeek?)

When we weren't working at the Waisman Center, we mostly just stayed at the hotel.  AJ needed to unwind, and he does that best in front of a computer where he can go to either http://www.nickjr.com/ or You Tube and watch his videos.

We did go swimming a couple of times, but as I mentioned in this post, he wasn't too keen on swimming with mom.  I tried to be fun, but it just wasn't the same as having his siblings and/or other kids around.  And both times we went to the pool, we were the only ones there.

One afternoon I decided we needed a little fresh air, so I dragged him out to see the lake, and to the University of Wisconsin/Madison campus.   He hated every second of that.  We shopped for t-shirts for the family at the U of W bookstore, and he bit my hand the whole time.  After that we ran through a grocery store quick so I could get a few supplies for the hotel room and for the trip home, and he chewed on my hand throughout that store too, so that by the time we left my knuckle was bloody.  He was very stressed about the shopping.  He was not interested in seeing the lake.  He wanted to do nothing but hang out in the hotel room.  So, that's mostly what we did, and I got very few pictures.  This is about it.

Zack and AJ did not have the joyful reunion you might have expected.  They acknowledged each other when we got home, and then both went about their business.  Zack did seem to miss me, though.  Maybe he's on his way to being a momma's boy too.

There was some serious slacking (notice how I worded that in a way that implied blame absolutely nowhere) on Zack's bottle-to-sippy-cup transition, both while I was gone and a few days before I was gone.  So it's time to get cracking.

Brief Thoughts

High and low points so far on our trip to Madison for the language study:

~All my kids have sensitive tummies.  I should always have a roll of paper towels in the car.  Forever.  Always.

~When a kid throws up and then cries....it's really hard not to throw up and cry right along with them.

~Swimming in a pool with mom just isn't as fun as it is with other kids.  If AJ could talk in full sentences, he'd have told me this.

~Neither Zack nor AJ seems very upset so far about their being separated.  Neither of them was all that into talking or looking at each other when we Skyped today.  We will try again tomorrow, but so far it looks like I laid awake worrying about the separation for nothing.  Of course, it's just been one day....now we have the weekend coming up, where Zack doesn't have school and therapy to distract from his brother's absence.

~You may think a peanut butter and jelly sandwich is better on ciabatta bread than on regular toast, but AJ would not agree with that.

~This area of Madison is full of students who wear all black and dart across streets after dark.  They don't bother with crosswalks.  I would have taken pictures to show the all-black figures had I not been so worried about trying not to kill them.

~AJ functions pretty well when I'm not in the room.  When I'm there, he whines and hides behind me.  When I leave, he sits down and gets down to business.

~Even so, I'm convinced he can see me through that window/mirror.  You know, the one where in his room it looks like a mirror, but in the room next door, it's a window and I can see what they are doing in there.  He keeps coming over to the "mirror" and pointing and babbling.  He knows that's no ordinary mirror.

~When he's working, I'm overcome with pride at how adorable, hilarious and brilliant (well, you know what I mean by that) he is.  I can't stop smiling.  And I can't help but notice how the researchers working with him are pretty serious, writing things down, and not at all engrossed in his adorable-ness like I am.

~Tomorrow they are going to attempt a audiology test on AJ.  He has never cooperated with a hearing test in his life.  So this ought to be entertaining.

On the Kindle

Mark got me a Kindle for my birthday, and I love it, just like I knew I would.  I'm sort of a techie geek.  I've been loving my laptop, my DSLR camera, my ipod and my blackberry (although I'm envious of everyone who has the Smartphone now, or whatever those phones are called where you can just swipe your finger across the screen....) for ever.

I love being able to download books and have tons of them right there at my fingertips.  I love the idea of having 3000 books in my purse.

"I've got 3000 books in my purse right now.  How many have you got, wuss?"

Fun, huh?

The thing is.....I don't feel like I have the real books.  I have a great deal of respect for the written word.  I respect that a book written is a book, whether it is on paper or on a harddrive.  But when you think about a book that you've read, that you've loved.....you picture the cover, don't you?  The colors.  The design.  The art.  The font used for the title and author.  Naturally I remember the characters, the dialogue, the setting, everything else I loved about the story too, but I think recalling the physical book I held in my hands is a big part of that memory.

When I put the latest book I'm reading on the sidebar in this blog, I put the cover art.  You're looking at what I'm looking at every time I pick it up.  If I just put the text of the title there, even if it included a link, it wouldn't be the same.

I've had my Kindle for a week now, and here's what I think so far:

If I want a book, I'll get the book.  The paper copy.  The old-fashioned, traditional version where I can read the author's biography on the back cover and see his or her picture.  The one where I can see the color and design on the cover.  The one where I need a paper bookmark and, if the gods were with me, I found in excellent shape in the clearance section of Half Price Books (unless I really want to support the author and the story, in which case I might pay full price somewhere and get it brand new -- for example, Giving it All Away, the Doris Buffett Story, by Michael Zins).

But if I just want to read the story -- I don't care about the cover art and I don't have any personal interest in supporting the author -- then I'll download the Kindle version.  And this will happen too.  I've already downloaded a bunch of classics I have always been meaning to read; Pride & Prejudice (although I did read some of Pride & Prejudice & Zombies, does that count?) and Uncle Tom's Cabin, to name a couple. 

And I will feel SO hip, reading old classics on my trendy new Kindle.

Oh, My Babies

This week I'm busy getting ready for a trip.  AJ and I are going to Madison this weekend, so he can participate in a language study at the Waisman Center.  Just AJ and I.  Zack is not talking enough for the study yet.  We hope to bring him next spring.

I've had a lot of misgivings about separating the boys for 4 days and 3 nights.  They don't share a bedroom, they are separated all day for therapy, but they are very, very close in spite of all that.

I know, in my head, that it'll be a good experience for all of us though.  Zack will be fine at home with daddy and Aliza, and grandpas and grandma will be coming over to help out.  AJ will be fine because he'll be with momma.  And I'd be lying if I didn't say a part of me is looking forward to a couple of days away with just one child.

But then this morning, I see the two of them doing this ....

and my heart hurts....how am I going to pull them apart?  For such a long time?  They have never been apart for more than a few hours.  Certainly never overnight!  Is Zack going to wander the house, looking for AJ?  Is he going to scratch his face in frustration and anxiety (which he did quite a bit this weekend, we think perhaps due to the fact that his favorite Wiggles DVD snapped in half), is he going to bite himself?  Is AJ going to give me that teary-eyed look he is so good at and say "Sack?  Sack?"

We will have to Skype each other every day, at least once, so that the boys can see each other.  I hope that is a good thing, and not just torturous for them.  I hope they are comforted by seeing each other.

I know what Temple Grandin would say.  She'd say "Do it. It'll be good for them.  They'll be fine.  Do it."  in her gruff way.  I hope she would be right.

The First Snowfall: A Toy that Actually Falls from the Sky

90 Seconds:
How long it took the kids to get out of bed and come downstairs when they realized it was snowing

47 Minutes:
How long it took to get three kids dressed in boots, snowpants, coats, mittens, scarves, and hats to go outside

4 Minutes:
How long Aliza helped shovel the driveway before she abandoned daddy to make a snowman

7 Minutes:
How long they spent playing in the snow before they were bored/cold and wanted to come back in

3.5 Minutes:
How long it took to undress and throw wet boots, snowpants, coats, mittens, scarves, and hats on the floor

9 Seconds:
How long it took me to get tired of picking up wet outerwear off the floor

21 Minutes:
How long it took before two of them wanted to put on wet outerwear and go back outside

10.25 hours:
About how long it actually snowed yesterday

5 Months:
How long it'll be before I can send the kids outside again without spending the better part of an hour dressing them like mummies

Doesn't it look like they're screaming?

The BEST Birthday Present Ever

I can't wipe the smile off my face.  One of my favorite blogs, Rage Against the Minivan, does a regular feature called "What I Want You to Know."  And today she posted my entry!  It's right here, check it out and leave her a comment telling her how much you love that she spotlighted Fragile X today, on my birthday!

http://www.rageagainsttheminivan.com/2010/11/what-i-want-you-to-know-fragile-x.html

Between that, and the gift card to Caribou that my daughter just gave me, I couldn't be happier.

No idea who took this picture and who to give the credit to, but isn't it sweet?

Random Fodder from my Caffeine-Addled, Over-Tired Mind

The other day I was at Trader Joe's and I saw a transvestite.  Am I using the right terminology here?  I mean a man dressed like a woman, makeup and all.  His pink flipflops really completed the whole look.  Remember when we used to call flipflops thongs?  And isn't it funny why that's totally not appropriate anymore?

I love living in a big city though.  Actually we are in the suburbs, but we have easy access to all sorts of things that would be rarer in smaller towns. Target is never more than a mile away.  Used bookstores.  24-hour drugstores.  Nice parks roughly every 3 blocks.  Kids' clothing consignment sales.

Great doctors and specialists.  Tons of therapy options.  And other people like us.  When you have a somewhat rare disorder in your family, it's easy to feel isolated and alone.  None of our neighbors have Fragile X.  No coworkers or classmates or old college buddies can relate to this.  But there are just a few Fragile X families in the Twin Cities area, and I'm so thankful to have gotten to know them.

Yesterday my friend Bobbie and I did our annual take-a-day-off-and-go-shopping-and-eat extravaganza.  We started at Gerten's where they have amazing Christmas stuff; not just the usual lights, tinsel, and ball ornaments you find at your local grocery, department, or drug store.  They have special things.  Lights that look like little bunches of berries.  Ornaments in the shape of cameras (perfect for me) or a plate of sushi (perfect for Bobbie).  Pine greenery to make your house look and smell all Christmas-y.

Which reminds me, I'm really into "Merry Christmas."  Not "Happy Holidays."  I don't want to be generic. Am I wrong in thinking Christmas should smack of Jesus?  I love Santa and decorated trees and presents and wreaths and all the symbols, really, but I don't want to dumb it down so much that it's just a happy, be-nice-to-your-neighbors, smile-at-strangers, give-to-charities kind of time.  It should be a specific time to celebrate that Jesus was born.

Okay, stepping down from the pulpit now.....

We had a long Mexican lunch where we talked about all of our kids a little (six of them between the two of us), and pondered a few other important questions.  Like, is it "butt naked" or "buck naked?"  There are only so many people in this world you can ask a question like that, and I'm blessed to be good friends with one of them.

She did not have an answer for me, though.

We caroused the mall the rest of the afternoon, and when we felt we could drop, we stopped and ate again, this time at the Cheesecake Factory, which might hold a close second now to our top favorite place to nibble and chat, the Mystic Lake Casino Buffet.

Today is my birthday by the way, and the boys wanted to make sure I didn't miss a minute of it.  They got up at 4.  AM.  This morning.  By now I feel like it should be late afternoon and it's barely past lunchtime.  This is why my internal clock is such mess.  This is why I have to drink caffeine to stay conscious during the day, but quit drinking it by mid afternoon so I can pass out at night.

Oh, no news on the sippy cup struggle.  This morning Zack demanded a bottle at 4 AM and as it turns out, I have very little fight in me at that hour, so he got what he wanted.  He wanted another one and I resisted until 6, when I gave in yet again.  I'm so tired of this war.

I'm going to take my scatterbrained self outside to pick up the toys in the backyard.  Snow is in the forecast.

Wordless Wednesday (captions don't count, do they?)

Backpacks are so preschool; in kindergarten it's all about frontpacks.

Testing those Sensory Issues

There's nothing like a trip to the Mall of America on a Saturday to check the sensory issues.

Now that I sort of grasp the idea of sensory problems and how it might feel to be a kid with autism and/or Fragile X Syndrome, I have a new awareness of my surroundings.  I notice when the TV and computer are both on and making noise at the same time.  When I put lotion on the boys' dry skin, I really try to warm it up in my hands before rubbing it on them.  My first thought when the smoke alarm goes off is not Where's the fire? but Shut it off, it'll terrify the children! (I should explain that the smoke alarm goes off once a month or so when I cook.  Not that I cook only once a month or so -- that's just how often I set off the smoke alarm.  That's another story entirely.)

Yesterday we took the kids to the Mall of America, and I was hyperaware of all the sensory stuff going on in there.  It's brimming with people in early November -- all the Christmas decor is up and the shoppers are out in masses.  Not that we were surprised.

But sensory-wise, behavior-wise, the boys do pretty well at the Mall of America, because the thing about that place is, even if it's crowded, it's huge enough to handle a crowd.  The hallways are gigantic, the ceilings are crazy high, so even if it's packed with shoppers and mall-walkers and people watchers, you don't really feel claustrophobic in there.  It's almost like being outside.

We thought we'd check out the brand new Microsoft store and here's where we were stupid, because, duh -- if we thought the rest of the mall was packed, of course the newest, hottest store was going to be buzzing like a bee hive.  It's like there were rock stars in there or something, you could hardly get near it.  Then we found out later that Kelly Clarkson was coming to promote the new store, so it wasn't just LIKE there were rock stars.  There were.  If you consider Kelly Clarkson a rock star.

So naturally when we got wind of the crowds, we steered clear.

Next we passed by a store that just sold model trains and accessories for trains -- it was the coolest.  It was also pretty jammed but it didn't look like it would be impossible to get a double stroller in there, so we went for it.   And both boys enjoyed watching the toy trains toodle along on their tracks for a few minutes.  Like a couple of regular old 5 year olds.

Since you sometimes end up waiting awhile for an elevator, we figured we ought to head up to the food court and get our McDonalds and find a free table before it got any closer to lunchtime.  This is something else we've done with the boys a few times, and they love sitting up there over Nickelodeon Universe, watching everything that goes on down there while they munch on chicken nuggets.  They don't love to walk around in Nickelodeon Universe -- but they do enjoy looking at it from afar.

After lunch we just walked a bit, the boys taking turns walking and riding in the stroller, and though the people were thick and the noise level was aggravating, they both tolerated it so well.  Even when we walked by an area where a group of dancers were performing to a percussion group (i.e., a lot of drums!), they walked by without incident.  I was so proud of them.

After a quick walk through the American Girl store (as no trip to the MOA is complete without that, if Aliza is along), we were out of there, utterly proud of how great the boys behaved the whole time.  Generally, outings with the boys last an hour, maybe an hour and a half if things are going particularly well.  Saturday, though, they stayed happily at the mall with us for over 2 hours!  A very huge accomplishment.

Sunday we went to Nana & Grandpa's house for a little rest, relaxation, and football.  Here are some photos especially for Nana, since she wasn't there.  Jocelyn kept asking where Nana was, and saying Nana had gone "bye bye."  We missed her, but I am pretty sure she's having a great time visiting her cousins!

 

I love this picture of Zack!

Going for a stroll in daddy's shoes.







P.S, for anyone who is keeping score -- no progress on getting Zack to take a sippy cup.  Grandpa worked on him Sunday afternoon a little bit, but he's hanging tough.

P.P.S., I thought I'd pretend I'm a pro and put the blog name on some of these photos, but it takes for-ev-er to edit and save them with the name on there, so I'm not going to bother with it.  Just please don't steal my pictures!

Nope. Nothing.

It's been 10 days now, and Zack has been a formidable opponent.  He has held his ground and so have we.  He has not once put his mouth on a sippy cup without a strong reinforcer (note the ABA-speak here, people.  I'm converted.).

Can't blame the kid.  He's been drinking from bottles since the day he was born.  Literally.  Actually he had a bottle shoved into his mouth within the first couple hours of life, due to a bit of low blood sugar.  I have a great picture of a nurse holding his bony little 5 lb. 8 oz. self, giving him his first bottle ever.  Unfortunately I can't find it, but I did find this cute one of Aliza giving a bottle to one of the boys, who for the sake of this story, we are going to assume is Zack.

On the other hand, Zack has become quite adept at handling a spoon -- a previously unperfected skill.  Well, I might be pushing it to say he's "quite adept."  He can spoon feed himself applesauce because he's decided it's watery and a good substitute when he's thirsty and sippy cups and regular cups are all he is ever offered.

Oh, this is about to get really really painful, though, because I know what the next step is.

We've been giving him one bottle in the morning, with his chocolate milk and his liquid multivitamin in it.  There are two reasons for this; one, I'm really anxious for him to take that multivitamin, since he has never in his life willingly and knowingly consumed a vegetable, and two, I wanted him to have that milk in his belly before he goes to school so he's not hungry/cranky for his teachers.  As we all know, hungry and cranky are hand-in-hand best friends so I like to keep them out of Zack's life, if possible.  He has enough troubles.

So what I'm going to have to do is eliminate that morning bottle.  That one last bottle he's been clinging to for dear life.  It's going to be loud.  The screaming, I mean.  His, I mean.  Mine will be all in my head.  Maybe I'll get the video recorder out so I can post it here and you can all share in the torture.