Monday, August 22, 2011

Back to Basics

Our AC broke yesterday. Luckily, it was not a 90 degree day.

I opened up all of the windows to try and get a cross-breeze going. And it was a lovely rainy day, so you could hear the drizzle of water from the gutters all afternoon. (After a hot NY summer with very little rain, this was welcome and calming, which in a house of three little boys, a little calm is nice.)

The heat rises something fierce in our house and even with the AC going, nights can be uncomfortable. I also opened up all of the windows upstairs to make sleeping better for the boys.

Then, in the middle of the night, I remembered why I don't like the soft breezes in the middle of the night in our house.

It's frakkin' LOUD outside our house. And we live in the suburbs. I suppose those that live in NYC are like "C"mon, woman, how loud can it be? We have traffic 24/7!"

So yes, it's not loud like a traffic jam outside my window at 3 a.m. But we live in a town that has rail road tracks going through the center of town. Every time a train comes through town, it's procedure to blow the horn before going through the intersection.

You know how many trains go through upstate NY?

Lots. Who knew rail transportation is so popular these days...?

And the frakkin' birds at 4:32 a.m. Really? Must you chirp that early? And with such exuberance?

I had to sneak into the boys' rooms and close their windows with the stealth of ninjas in the dark of night, just to make sure the train and birds didn't start our day hours prematurely.

Friday, August 19, 2011

Way to go, Broadway!

Broadway For Autistic Kids: 'The Lion King' Will Slightly Alter Show        

Broadway Autistic Kids
First Posted: 8/17/11 11:52 AM ET Updated: 8/18/11 03:17 PM ET
MARK KENNEDY / AP
NEW YORK -- Families of autistic children have a new place to engage their sons and daughters – Broadway.

The Theatre Development Fund, a nonprofit organization focused on providing access to live theater, announced Wednesday it will present an autism friendly performance of "The Lion King."

The Oct. 2 matinee of the long-running musical at the Minskoff Theatre will be slightly altered to make those with autism more comfortable, including cutting jarring sounds and strobe lights.

"We are so excited about this and, at the same time, I'm apprehensive because no one has ever done this before," said Lisa Carling, the director of the fund's accessibility program. "No one knows what the effect will be when you put 500 to 600 children and adults on the autism spectrum in an over 1,600-seat theater."

Three quiet areas with beanbag chairs and coloring books, staffed by autism experts, will be created inside the theater for those who might feel overwhelmed. Ticket prices have also been reduced, with the top seats going for $79, down from the top range of $133.

The fund bought every seat in the theater to gauge interest and word-of-mouth has already left few seats available. Organizers, who say this is the first time such an experiment has been attempted on Broadway, want to see if it should be replicated at other productions. "We'll be looking at the dynamics of the audience, seeing if everyone is having a good time," said Carling. "We want it to be a very welcoming, nonjudgmental environment."

Autism disorders strike one in 100 children, according to U.S. government estimates. Children with the diagnosis are often sensitive to loud noises and harsh lights, and find it hard to sit still or remain quiet. Autism spectrum disorders include both severe and relatively mild symptoms.

For many families who have a child with autism just going out to a restaurant – much less a live theatrical event – is a daunting proposition.

Alicia Hart, an advocate for children and adults with autism and author of "Brains, Trains & Video Games: Living The Autism Life," welcomed the experiment, calling it "great leap into the future."
"Theater, in and of itself, is a phenomenal vehicle for children with autism," she said from her home on Merritt Island, Fla. Autistic children, she explained, must learn in public to modulate their voices, their bodies and their facial expressions – just like performers.

"In essence, they're really acting – they're acting their way through life. This is the greatest performance that they'll ever give and it doesn't stop," said Hart. "The theater is not used enough as a teaching tool and this is going to open a lot of doors."

To accommodate the special audience, experts identified several moments in "The Lion King" when the sound or lights needed to be toned down, but none was more than 30 percent softened. There were seven changes in all, including the volume adjusted down in the opening number, to steam blasts and to Mufasa's roar at the Elephant Graveyard. The show will not change the opening sequence of actors and dancers in animal costumes parading down the aisles to "The Circle of Life."

A 16-page downloadable guide available at the fund's website tells children with autism what to expect during the show, including what ushers do and what to do during a curtain call.

"If I want to clap, I can. I don't have to clap if I don't want to. If the clapping is too loud, I can cover my ears, wear my headphones, or hold my Mommy or Daddy's hand," the guide advises.

At another point, the guide tells the children not to be scared by the actors: "Some of the animals and singers may come close to me. The animals are not real; they are just actors wearing costumes and makeup, like on Halloween."

The advocacy group Autism Speaks, noting how restaurants and movie houses are reaching out to autistic kids, helped the fund figure out how to make children with autism feel more comfortable at the theater.

"There's definitely a nice movement in that direction to accommodate families with autism and be more compassionate," said Dana Marnane, an executive at Autism Speaks.

Hart acknowledged that having a theater filled with children with widely different needs and abilities may be stressful, but at least it's a start. And even if the experiment is deemed a failure, she said there likely will be lessons for the next attempt.

"There are going to be children who go to this and it's still not going to be right for them. It's not maybe the right fit, maybe not the right time, maybe they're not ready for this. But that doesn't mean we stop trying," she said.

"The Lion King," recommended for children 6 and up, runs a comfortable two and one half hours, including one intermission. All the changes to the musical were made with the approval and blessing of Disney and everyone from the ushers to the actors are on board.

"The Lion King is honored to be the first Broadway show in history to perform a specially tailored performance for the autism community," said Thomas Schumacher, producer and president of Disney Theatrical Productions.

Carling said the fund recently received an inspirational email from a mother in upstate New York who said she was tired of trying to take her autistic child to a musical and have people stare at her and her child.

"There are so few opportunities so hopefully this is the beginning of many more," Carling said.

Thursday, August 18, 2011

My Job is Done

Ha - a self-imposed time-out!
He can discipline himself now!

Autism or Apraxia?

Last January, our youngest was diagnosed with Autism. The docs who diagnosed him said that between the speech delay and the lack or social interaction, it was a definite.

Then, this Spring, Emerson's Speech Therapist came to me and said she thought that he has something called Childhood Apraxia of Speech. I had no idea what that was, but geez, another diagnosis? Really? C'mon.

I sighed. Waited a few minute to sink in and then went into research mode.

OK, he has Apraxia. Now what?

Of course, Dr. Google always helps (notes below are from asha.com):

Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.

  • Only a few different consonant and vowel sounds

  • Problems combining sounds; may show long pauses between sounds

  • Simplifies words by replacing difficult sounds with easier ones or by deleting difficult sounds

  • May have problems eating

  • Makes inconsistent sound errors that are not the result of immaturity

  • Can understand language much better than he or she can talk

  • Has difficulty imitating speech, but imitated speech is more clear than spontaneous speech

  • May appear to be groping when attempting to produce sounds or to coordinate the lips, tongue, and jaw for purposeful movement

  • Has more difficulty saying longer words or phrases clearly than shorter ones

  • Appears to have more difficulty when he or she is anxious

  • Is hard to understand, especially for an unfamiliar listener

  • Sounds choppy, monotonous, or stresses the wrong syllable or word


  • I also went to You Tube and there are tons of video examples of kids with apraxia talking. I was able to hear their speech patterns and know that Emerson does in fact have it.

    The above checklist could be written describing all of Emerson's speech troubles. He frequently uses one to three word sentences instead of longer sentences, just because he can count on people understanding one or two words. If he uses more than just a few, he loses intelligibility.

    Here is some video of Emerson's speech:



    So here is my big question, which I will be posing to doctor's at his next appointment: Does Emerson have Autism (because the checklist above also applies to kids with ASD), or does he have Apraxia and is just a little shy?

    (And does it really matter, because they're just labels anyways....?)

    Sunday, August 14, 2011

    How come I'm not like Angelina Jolie?

    When I was younger, first married and having my first child, I always said I wanted to do a lot of traveling with my kids. I wanted the kind of family that picked up at a moments notice and flew to some exotic location. I'd have kids that we comfortable with airports and hotels and restaurants.

    Kinda like Angelina Jolie is today. You always see photos of her and her kids in some airport, all holding hands as they trek through the crowds in France or Kenya.

    And then two things happened:

    1) We had more than one kid. With three kids, it costs a lot of money to fly anywhere. I guess if we had Angelina Jolie's money, we could hop flights anywhere, but when we have to shell out $1800. just to get somewhere, we really have to save up and plan to go anywhere.

    and

    2) we had kids with Autism. Ease and comfort are not usually in our vocabulary. Flying, staying in a hotel, restaurants, lines - all are a challenge for our family. We do our best, and are getting better all of the time, but its been a huge learning curve. Learning to prepare our kids well in advance of traveling with social stories about the trip, what flying in an airplane in like, what our hotel will be like, researching menus of restaurants in advance to make sure there are foods our kids will eat...

    BUT

    I am proud of the level of comfort my kids with Autism have about being in the community. Since they were little boys, I have always taken them everywhere. Grocery stores, the movies, restaurants, stores, concerts - and most of these outings have made them very comfortable with crowds, waiting and new experiences. I know our limits; we don't go to the opera, ballet, or Michelin-start restaurants. We try to keep our activities family-friendly. And we have walked out of places before, if the boys just aren't going to make it, but we at least TRY new things on a regular basis.

    So I may not be as super-cool as Angie Jolie, but I'll give her a run for her money on a Mama of the Year award.

    Friday, August 12, 2011

    Age Game

    When I was younger, I could always win a prize at the Carnival if I played the "Guess Your Age" game. The guessers always thought I was at least 5 years younger then my real age.

    But then came kids and I just hoped that I just looked my actual age, because I always FELT 10 years older than I really was.

    In the past year, I've lost 30 pounds and have been trying to take better care of myself.

    Yesterday, another Mom told me I had a baby face and she thought I was 30 years old. I will be 39 next month.

    THANK YOU.

    Thank you, kind Mom-of-my-son's-friend. I don't know if you were just saying that to make me feel good, but mission accomplished.

    That felt GREAT.

    Potty Training with a Twist

    Today, the article I wrote months ago on potty training boys came out on the Huffington Post Parents page. I'm so thrilled. It's so nice to see your own name in print (or online...)

    You know, having three boys, I FEEL like an expert in this area, just because I feel like I've been potty training for YEARS, and yet I'm still struggling to potty train my youngest boy.

    As difficult as it is potty training boys, its ever so much more difficult potty training boys with Autism. I didn't discuss this in my published article, but its something we've struggled with figuring out with two boys now.

    I think there are two main hurdles with potty training boys with Autism - the communication barriers and the sensory issues.

    With our two sons with Autism, they just didn't have the language to tell me that they were wet or needed a diaper change. It took forever for them to have the words "I have to go potty." It was only after many hours of speech therapy and potty practice that the words came and were used at the appropriate times.

    Our oldest son wore Pull-Ups on his first day of kindergarten, just because he wasn't quite all-the-way potty trained. I was afraid he wouldn't tell the teacher he had to use the bathroom and pee his pants. And with his social difficulties, I didn't want him to immediately become the "pee pee boy" at school, the one who peed his pants all of the time. (He eventually became comfortable with the bathroom at school and was in undies by the time November rolled around.)

    And the sensory issue. How difficult is it to potty train boys who may or may not be able to feel the urge to pee or poo? Or tell when they are wet? Without the language piece, how can you tell if they are feeling it or not?

    I've had so many discussions about potty training with other parents of kids on the Spectrum and one thing is for sure: there is no reliable time-table. No "tried and true" method that will work with every kid. It's as individual as each kid with ASD.

    And just know that your frustrations are valid and felt by so many other parents going through the exact same things as you are. Just keep trying. Gently trying.  It's all you can do.





    Thursday, August 11, 2011

    Too much t.v.?

    We're all sitting at dinner and Tristan turns to us and says, "You know, I think we should be giving Emerson some Pedia Sure Milk."

    Chris and I look at each other and grin...

    "Really Tristan? Why do you say that?"

    "Because he hasn't eaten anything for years and years!"

     Yeah, he's been watching lots of commercials again. At least he's showing concern for his little brother.

    Genuis or good rememberer?

    OK. Now, I happen to think my three-year-old is a genius, but he also has Autism, so knowing whether he is a genius or just autistically quirky can be tricky.

    Not many three-year-olds I know can read, but Em has about 20 sight words down. The other day, he was playing with my other son's cootie catcher. (I didn't know this paper contraption was called a cootie catcher until our speech therapist mentioned it.) See photo below:



    Em was upset that he didn't get a turn, so I took the catcher and gave him a turn.

    "Pick a color," I said.

    "Yellow," Em said and pointed to the word yellow. (Our cootie catcher does not have the colored dots on the triangles like in the photo above, it just has the words written on them.)

    Huh. Interesting.

    We played out the game, and then I turned on the video camera:




    So he knows how to spell his colors.

    And yet when asked to read the words out of context of the cootie catcher, he didn't know them. But asked again on the C.C., and he read them.

    Genius or good rememberer?

    Monday, August 8, 2011

    My Old Friend's Wedding

    (And let me preface this with this: When I say "old," I mean I've known my friend a long time, I don't mean that SHE is old!)

    I recently went to an old friend's wedding. She and I met "back in the day" when we were both lowly admin assistants fresh out of college (well, she was out of college, I was on a "break" from college). So we've known each other since 1995? 1996?

    Anyways, it was "out of town" - which meant 2 hours away from home. The wedding didn't start until 6 p.m., so overnight accommodations were needed.

    Unfortunately, we didn't have a sitter, so I was going to the wedding solo, unlike the two other girls from this old workplace gang; they were bringing husbands, so I was going to be the 5th wheel. Chris was going to have to stay home with the boys.

    BUT

    being mostly ALONE for almost 24 hours was thrilling. I had a two hour car ride down, which I found heavenly. No one was screaming in the back seat about how he dropped his small baggie of goldfish crackers on the floor of the car - not once did I have to pull over to get said crackers. I put in an audio tape of a deliciously cheesy book and listened in bliss as the Amish countryside rolled by.

    I got to the hotel and went to the POOL TO READ A BOOK for an hour before getting ready for the wedding. I took a shower without small children peeking in while I was shaving my legs to ask me what I was doing. I did my hair and make-up without a little boy asking for me to also apply eye shadow to his eyes and cheeks.

    BLISS.

    And the wedding was a blast. My friend is a bit hipper than I am (at the moment. I blame parenthood for taking my hipness away. But who has the time or energy to even know what IS hip when you're wiping asses, making lunches and doing laundry all day!)

    The wedding was in a dinosaur museum, so there were all sorts of dino skeletons hanging from the ceiling. My friends made sure I didn't feel like a total heel for being the wheel of the group, and I took lots of photos to post on FaceBook later for the bride to tag herself in.



    I wish the bed in the hotel was more comfortable; I didn't sleep well, which feels like such a shame when you can sleep through the whole night without little ones needing something at 2 a.m. (last night was Monster dreams from the 3 year old!)

    And the ride back again was also a dream. I skipped the Amish country route on the way home, and took the awesome scenic lake route instead. I had a strong urge to stop at the outlet mall on the way home and just wander stores and try things on - just for fun - but the pull on home was calling me back.

    And who doesn't want to walk in the door to hear screams of "MAMA!" as they all run and plow into my abdomen?



    Sidenote: Sebastian's main concern with me being gone for a night was with what Dada was going to feed him while I was gone. He said, "You'll come back tomorrow, right? And what if Dada feeds us TUNE FISH?" This coming from a boy who has never even tasted tuna fish....

    Thursday, August 4, 2011

    Throwdown in the Supermarket Parking Lot

    Let me say something before getting into the story...

    Other than hitting a boy on the bus in 5th grade, because he called me a nasty word (of which I didn't know the meaning, but knew it was BAD), I have never been in a physical altercation before. It's just not me, I'm more of the easy-going, passive kind of person. I try and let everything roll off my back, if possible. So the thought of me being involved in an altercation, for those who know me, is just plain ridiculous.

    Here's the set-up -

    The kids got sick. Really sick. I was bathing them in rotational shifts to get sick off their bodies as well as cool their fevers down. I was washing, changing, and rewashing sheets, because we only have two sets of sheets per bed and we were blowing through those every few hours. I was cleaning puke out of the rugs.

    Then it was off to the pediatrician's office to figure out what was going on in their little bodies. Now, I normally would not take all three kids to the pediatrician's office, but I didn't want to infect other family members, asking them to babysit. And I wanted them all looked at, because I didn't want to have to come back to the doc's office AGAIN. One trip is enough.

    We spent an hour and a half in that small exam room. Wait 20 minutes for the doc to see us, another 10 for the nurse to come back and administer the strep cultures, another 20 minutes for the cultures to develop, and YES, a round of strep for the Thibault family!, then another 20 minutes for the Doc to come back and give us prescriptions.

    Oh, and because of his Autism, Tristan doesn't like to be in small enclosed spaces like an exam room. Oh, and he puked on the floor of the exam room while we were waiting and I had to call someone to come and clean it up and also make sure none of the kids were stepping in it while we were waiting.

    THEN after all of that hell, it was off to the Supermarket to get the prescriptions filled. Another hour wait, because it was cold and flu season and everyone was there doing the same thing as we were -- getting meds. I pushed them around in the cart, tried to make up games to keep a sick 6 year old, a sick 4 year old and a 3 year old busy inside of a supermarket for AN HOUR.

    FINALLY it was time to go home with meds in hand. I was close to the point of tears as I pushed the kids out to the car and put them in their car seats. I just wanted to GO HOME and lay on the couch for the next three days and SLEEP.

    I pushed the cart to the front of my car, near the light post, and started to walk back to my car - when I saw HER. Do you remember the hag in "Princess Bride?" The only who shouts at Buttercup in the dream sequence? This woman was looking at me in the same way, mouthing the words "Shame!"

    Let me just pause and say this: I usually park close to the cart return so that I can take the kids out of the cart, put them in the car, and put the cart in the return. On this day, returning the cart was not my top priority.

    So this woman is giving me the stink-eye and mouthing the word "Shame" over and over again as I back out and start to pull away.

    And I snapped. Had enough stress and misery for one day.

    I pulled my car around to the spot next to this HAG. I got out of the car, walked up to the open window and asked, "What is your problem?"

    Hag: "Could you be any lazier? So lazy that you can't return the cart?"

    Me: "Listen, lady, not that its any of YOUR business, but I've had a really hard day, and I didn't feel like leaving my sick kids in the car, ALONE, while I traipse across the parking lot to the return. The cart is out of the way."

    Hag: "People like you are just so lazy. So rude. What's wrong with you?"

    Me: "Are you kidding me? Seriously? I have three kids in the car, all sick, two with a disabilty and I don't feel like I should need to explain myself to you."

    Hag: "Your kids aren't disabled. I saw them. They looked fine to me. Now you're not only lazy, you're a liar."

    Me: "Whaat?"

    Now here is where I wanted to have a Master's degree in Profanity. I wanted to let loose a 10-minute tirade on this woman, but in stressful times like this one, I lose all ability to spew really creative strings of cuss-words at people. (I have two friends who are masters at profanity, and I have always secretly envied them for having the right insult for every occasion!)

    And I felt the rage bubbling up. I wanted to scream at her. Make her feel 1,000 times worse than she was making me feel at that moment.

    I also wanted to drag Tristan out of the car and have him cough all over her and strep her up - that would teach her.

    But finally, with a loss of words and patience, I said:

    "BITCH"

    and got in my car and drove away.

    Two lessons from all of this:

    1) Never judge a person or situation before you know the whole story.  You don't what that person has been through or is going through. Instead of commenting, offer some assistance. Be nice.

    and

    2) Always have a practiced-set of profanities ready for any situation...

    Kids Say The Darnedest Things

    Tristan this morning: "I don't have autism anymore."

    Me: "Really? Why do you think that?"

    Tristan: "Because it came out with my tonsils."




    Hmmm, if only that were true, sweetie...