February Break Day #1

O.k. today starts February Break 2012.

I'm going to rate my Sanity Levels every day this week and see how I do.

For those of you unfamiliar with us, we live in Upstate New York, which doesn't have the greatest weather in Winter. Usually, we are up to our armpits in snow. This year, we've been fortunate to have a mild winter, and I can actually see grass outside right now. But it's still 32 degrees outside, so its not like the kids are throwing on their sandals and playing outside much. Whenever I send my boys outside, I bundle them up (which takes 15 minutes) and then end up playing in the cold for approximately 7 minutes before begging to come in again for some hot chocolate.

So school breaks can be ...A CHALLENGE.

Three young boys, 7 years old and younger, two with Special Needs, cooped up in the house for a week.

Now, I'd love to take them out places every day and Do Stuff with them, but everyone in the area (and their brothers) flock to the few indoor places to play in the area, so each place is jam-packed with kids and covered in germs. And for kids with sensory issues, crowded places and lots of noise in not always welcome. I've seen my sons cover their ears and look for quiet corners to take a break in places like these.

So we avoid the popular places during breaks.

So, my sanity levels during these school breaks take a hit. We usually do well for the first three days. The kids find it novel to play together at home, playing games and making up games and forts to play in - but then we start to lose it on Day #3. There is a lot of  "He's copying me," "He's touching me," "He's being mean to me," "He hurt me," and so on.

(Rating scale: 10 - Completely relaxed and with it. 1 - Need an immediate dose of chocolate or alcohol. Or both.)

So - Sanity Level, Day #1: Rating - 10. No immediate stress. Kids are watching Phineas and Ferb, having eaten breakfast. Getting dressed soon, and running a few errands with them this morning. Possible play date with friends this afternoon.

Perhaps I should do End of Day Updates as well, to check Sanity Levels then...


End of Day UPDATE: Sanity Level Day #1:  2. Day was going well until the trip to Target for new sneakers. I had one kid running the aisles, one kid being ungrateful and cranky, and one pretending that no size sneakers would fit his feet. And then I accidentally bonked him in the head with my elbow while trying to get the shoes on his feet. Lots of tears, some by me, but all was fixed with McDs Happy Meals on the way home. I was hoping Little Man would take a nap in the afternoon, but NO.
By the time Husband got home, I was close to losing it. A hot bath at the end of the day helped me recharge a little. I put my head under water and listened to myself breathe for a bit, for my Zen-;like moment....

It's All About the Money, Honey...

So our town is going through a financial crisis and there are major budget cuts being made in the schools. Gone is the Music program for elementary schools, gone is the Gifted and Talented programs, gone is some of the advance placement programs, gone are at least 37 teachers, gone are a serious list of electives, and gone are some of the programs for kids with Autism and Special Needs.

Sigh.

Ok. Here it is: I feel like our community is setting up our kids to be Medium. You can't reach for greatness, because we don't offer that. But don't have learning needs either, because we don't offer that either.

I'm in a unique position to see more than one side of the issue here.

I have one son with Autism, and his needs are significant. Currently, he's in an integrated classroom with a General Ed teacher and a Special Ed teacher, co-teaching for many hours of the day. He also shares an Aide with another student, for support, redirection, help with transitions, and with focus on his lessons. He's "on grade level" for most areas of study, but below with Math.

This plan has worked, for the most part, for this past year. We've had problems with focus and attention, with some socialization issues on the playground during recess, and with keeping him motivated to complete his class work and home work. I was hoping that, because its been working, we would say something like "Let's stay the course" at his next Annual Review.

BUT, then the budget crisis happened.

Last week, I found out that the Integrated Class program has been suspended. It's no longer available.

Now, it has always been my hope that my son would be mainstreamed into a General Ed class at some point, but no way did I think it would happen by the 3rd grade.

HE'S NOT READY. But because of budget cuts, he's "ready" whether we like it or not.

So into the General Ed class we go next year. AND it's a new school for him. AND we've heard that 3rd grade is fairly challenging, academically. AND I'm unsure if we will be able to keep his Aide for next year - his teachers have been trying to prep us for the fact that he may lose her at some point.

So 3rd Grade for a student with Autism - with no supports.

That doesn't sounds great. At all.

Now - on the other end of the "spectrum," so to speak, I have a 5-year old typical son in Kindergarten and a 4-year old son with Childhood Speech Apraxia, going to Kindergarten in two years.. Both show signs of being above-average in reading and the 5-year shows the signs for Math as well. (The 4-year old is already reading most of the things that the 5-year old brings home from school!)

I would like to see both boys challenged in these academic areas at school, but with the budget cuts taking out the Gifted and Talented programs, it won't be possible. They can only rise to grade level and not advance any further. This, again, I think is a huge mistake.

I will make no claims as to understand budgets or money or the legality of the issues that the Board of Education is facing in our school district. (I personally think I have dyscalcula, a math-form of dyslexia) I'm sure there are issues I'm not factoring in here.

BUT

I can say that these cuts are AT LEAST restricting students, and AT THE MOST setting students up for failure by not supporting them in the way they need to be supported.

How is this acceptable?

Happy New Year!

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.

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...

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.

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.

My Job is Done

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