Ok. I've made three resolutions this year, and I am making myself stick to them.
1) Be healthy. This means exercising and eating healthier. Stopping eating so much CRAP. I lost 30 pounds and have put 7 pounds back on in the past 4 months, just because I haven't been paying attention to myself.
SO
2) Pay attention to MY needs sometimes. My need to be healthy. My need to be sane. My need to have something for myself every once in a while.
and
3) Keep writing. It's what I was born to do. When I was 4 years old, I said I wanted to be a writer. I need to do this. And now my 7-year old son wants to be an author of scary stories. By watching me write, he will see that its possible and sometimes a necessity for some people to put their thoughts and words on paper. Or on screen.
And however his words come out, I will cherish them always, because they are his. A window into his heart and amazing mind. Autism or no, I am so proud of that boy.
Tuesday, January 3, 2012
Monday, October 3, 2011
It's Been So Long!
Gah, I just realize that it's been over a month since my last post! What have we been up to? Let's see...
1) Finished up with the summer craziness. I don't know if it's just us or all families have this problem, but summer kicks my ass! With three kids and different activities, I was driving kids here and there and everywhere, making sure Em was getting to all of his therapies and prepping kids for school.
2) The last week of summer, Chris took off from work and we spent three days hanging with the kids, going to the water park, the zoo, the playground, going to school orientation days, and just playing around. And then --
3) Chris and I got away for three days BY OURSELVES! We dropped the kids off with Chris' parents and flew down to Orlando for a few days or rest and relaxation. We went out to dinners, napped in the middle of the day, and rode roller coasters like crazy kids. It was wonderful - we had a great time but I missed the kids like crazy too.
4) Kids started school two days after we got back.
a) Sebastian had a hard time transitioning to all-day school. For the first two weeks, he would come home and cry for no reason. I'd ask him why he was upset and he would say, "I DON'T KNOW!" But he seems to be getting over the inital shock and getting into the routine of things and is really enjoying it.
b) Tristan eased into 2nd grade without too much trouble. BUT -- because of his disability, he's having some trouble focusing in class and keeping on task. I'm working with the teachers to set up a reward system for staying on task during lessons, so we'll see how that goes...
c) Little Em started preschool and he LOVES it. We kept him in the same school where he went to Developmental Group, so he feels like the big kid, showing the new kids around. I was worried that because of his speech apraxia, he would be lost with all of the typical kids, but because he's so comfortable with the class, he seems to be holding his own with the other children.
5) Tristan, Sebastian and I all had our September birthdays. The boys had a great Star Wars party with Darth Vader cupcakes and they got lots of cool boy toys like Hex Bugs, lightsabers, and Legos. I had a quiet birthday - shopping with my Mom (without kids, what a treat!), lunch with Mom and Em, relaxation time during afternoon nap, dinner with the fam, and then I saw "Jane's Journey" in the evening.
OK. Time for bed, more later...
1) Finished up with the summer craziness. I don't know if it's just us or all families have this problem, but summer kicks my ass! With three kids and different activities, I was driving kids here and there and everywhere, making sure Em was getting to all of his therapies and prepping kids for school.
2) The last week of summer, Chris took off from work and we spent three days hanging with the kids, going to the water park, the zoo, the playground, going to school orientation days, and just playing around. And then --
3) Chris and I got away for three days BY OURSELVES! We dropped the kids off with Chris' parents and flew down to Orlando for a few days or rest and relaxation. We went out to dinners, napped in the middle of the day, and rode roller coasters like crazy kids. It was wonderful - we had a great time but I missed the kids like crazy too.
4) Kids started school two days after we got back.
a) Sebastian had a hard time transitioning to all-day school. For the first two weeks, he would come home and cry for no reason. I'd ask him why he was upset and he would say, "I DON'T KNOW!" But he seems to be getting over the inital shock and getting into the routine of things and is really enjoying it.
b) Tristan eased into 2nd grade without too much trouble. BUT -- because of his disability, he's having some trouble focusing in class and keeping on task. I'm working with the teachers to set up a reward system for staying on task during lessons, so we'll see how that goes...
c) Little Em started preschool and he LOVES it. We kept him in the same school where he went to Developmental Group, so he feels like the big kid, showing the new kids around. I was worried that because of his speech apraxia, he would be lost with all of the typical kids, but because he's so comfortable with the class, he seems to be holding his own with the other children.
5) Tristan, Sebastian and I all had our September birthdays. The boys had a great Star Wars party with Darth Vader cupcakes and they got lots of cool boy toys like Hex Bugs, lightsabers, and Legos. I had a quiet birthday - shopping with my Mom (without kids, what a treat!), lunch with Mom and Em, relaxation time during afternoon nap, dinner with the fam, and then I saw "Jane's Journey" in the evening.
OK. Time for bed, more later...
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.
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
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.
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
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....?)
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.
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.
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.
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