Sunday Review: FALLING (a new Off Broadway Play at the Minetta Lane Theatre)

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FALLING boldly explores the dynamic and complicated reality of a family with an autistic young man. When a relative comes to visit, the entire family is thrown out of equilibrium, with everyone trying to balance what is best for the family and what is best for them. The play bravely speaks a truth about love and family and about hopes and dreams. It asks “How do you love someone who is difficult to love?” 

FALLING is a new play written by Deanna Jent and directed by Lori Adams. The stellar cast features Daniel Everidge, Daniel Pearce, Celia Howard, Jacey Powers and Julia Murney.

***

The stage was immediately familiar to me. A wall calender covered with scribble and post its, toy trains scattered around the living room floor. Then 18 year old Josh (Daniel Everidge) walked on stage, his self stimulatory behaviors and speech reminded me so much of The Boy. Much of the dialogue between Josh's parents, Tami (Julia Murney) and Bill (Daniel Pearce) - a disconnected couple, struggling to work together as a team - was also painfully familiar. 

I felt like I was thrust into my future.

Twenty minutes into FALLING I was in tears. There were moments throughout FALLING that were so intimate, it felt almost intrusive. And there were parts of the play that made me feel less alone in my thoughts.

You don't need to be a parent or educator or have a connection to autism, FALLING is a must see for everyone. Beautifully written and brutally honest, for parents of children with autism Deanna Jent's new play epitomizes the meaning of unconditional love, acceptance and all the complex feelings of parenting a special needs child. And for everyone else, FALLING begs the question: how can we be taught to help.

The reality of FALLING will kick you in the gut and haunt your thoughts long after you've left the theatre. FALLING sparks a conversation that is long overdue.

After the play, the audience was invited to stay for a talkback with the playwright, director and actors. Deanna Jent shared that she drew from her own personal experience to write FALLING. I especially appreciated that she stated that her portrayal of autism in FALLING is not the reality for all parents and families.

When I asked if she felt compelled to write a happy ending, she admitted it was a struggle. Deanna wanted to write a play that was honest, she wanted to create characters that were real and that it was important for Tami to find peace. And I guess, peace is just as necessary as happiness. 

FALLING is about as real and raw as it gets.

***

FALLING is playing at the Minetta Lane Theatre 

To purchase tickets click HERE and use the code MARK for discount.

Show Dates:
Performances from 27 Sep 2012
Opening 15 Oct 2012
Closing Open-Ended

Performance Schedule:
Tuesday, 7PM
Wednesday & Saturday, 2PM & 8PM
Thursday - Friday, 8PM
Sunday, 3PM


Tickets:
800.982.2787 (mention code MARK for discount)
Pricing: $39.50 - $68.50

Show Run Time:
75 minutes, no intermission

Disclaimer: I was provided with 2 tickets for the play.  All opinions are my own.

What Autism Insurance Reform Means To Us

In case you haven't heard, Governor Cuomo signed the one of nation’s strongest autism insurance reform measures into law. 

THANK YOU! THANK YOU! THANK YOU!

It's about time.  Because autism ain't cheap.  And for a family like ours, it is a huge relief.  HUGE.  

Ever since September, we've been paying for Occupational Therapy for The Boy.  When The Boy was in CPSE and the DOE was paying for it, we had 2 hours of OT at the Sensory Gym.  Now that we're paying for it, we can only manage 1 hour a week. 

The going rate for an hour at a Sensory Gym = $175/hour.  That's $1,400 so far.  

We've also started with a private homebased ABA therapist.  I haven't even gotten that bill yet.  I'm trying not to think about it right now.  

Did I mention we want to start the theraputic listening?  Yeah, that's about $300 to start.

I don't think I've felt the financial burden until most recently.  Up until now, we've been able to manage.  I mean, last year was tough for us financially but we squeaked by.  But at some point, money runs out.

That's where we are. 

I hate that the phone rings constantly.  I hate that I have to check the caller ID before picking up because I'm hiding from some collection agency.  (I hate hiding the phone from The Boy because he's just discovered the "talk" button and likes to answer the phone when it rings.)  But it's for a $1000 medical bill that I just can't pay, not right now. Should I pay $1000 for the baby I lost when that money could help The Boy? And I really hate that it's a decision I have to make.

For the last few weeks, I've been thinking: how are we going to continue paying for the Sensory Gym and the ABA therapist?

Will it come down to other decisions like - Do I cut the cable?  To afford one more session of OT.  Do I only pay half of the Con Ed?

Should The Husband or me get a part time job? 

Do I drop out of graduate school?  After this semester, I'll be 4 classes away from an MFA degree.  I could teach part time.  But is it fair to take money and time away from The Boy?  I have a few more weeks until spring registration to decide.    

In order to pay out of pocket for services that The Boy needs, these are the sacrifices I am willing to make.  

And there's a small  huge part of me that's embarrassed by all of this.  Because The Husband and I both have good okay jobs.   Yet we still struggle financially.  And I shouldn't feel ashamed because I know, we are not the only parents out there making these kind of decisions.  It still doesn't feel good, admitting that we are living paycheck to paycheck.  But it's the reality of our world.  This is part of the journey.    

So...back to the Autism Insurance Reform Bill.   It's important.  It's necessary.  And it just may make our lives a little bit easier.  And maybe, hopefully, these decisions will not have to be made. 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~  
Summary of 2011 Autism Insurance Reform Bill in New York:
S.5845 - Sponsored by Senator Charles J. Fuschillo (R-Nassau)
A.8512 - Sponsored by Assemblyman Joseph D. Morelle (D-Monroe)

The bill would:

• Require private health insurance companies to provide coverage for the screening, diagnosis, and treatment of autism spectrum disorders including:
  
  • behavioral health treatment (such as applied behavior analysis)
  • pharmacy care (if the policy covers other prescription drugs)
  • psychiatric care
  • psychological care
  • therapeutic care, including non-restorative therapy (if the policy covers therapeutic care for other conditions)
  • any other medical care provided by a licensed health care provider
• Impose no age caps, and impose no visit caps that apply solely to ASD
• Provide coverage for applied behavior analysis to $45,000 a year; that limit will increase annually based on increases in the medical consumer price index
• Allow deductibles, co-pays, co-insurance, care management, utilization review, external appeals, and use of provider networks only in the same manner as a policy applies to coverage of other conditions
• Not affect any obligation to provide services to an individual under an individualized family service plan, an individualized education program (IEP), or an individualized services plan. The purpose of this bill is to require insurance coverage for services provided outside of an educational setting for services prescribed by a physician or psychologist
• Prohibit an insurance company from terminating coverage or refusing to renew, adjust, amend, issue, or execute a policy solely because the individual has been diagnosed or received treatment for autism spectrum disorders
• Take effect one year after signed into law
• Apply only to state-regulated insurance plans; it does not apply to self-funded insurance plans which are regulated by the federal government under ERISA law

I'll Walk To The Sensory Gym If Needed

On Friday night, I was almost tempted to cancel our session at the Sensory Gym.  I was tired and privately paying for therapy is starting to catch up with us.  But then I found The Boy in the bathtub, fully dressed with half a bottle of Johnson's soap poured all over him.  So yeah, cancelling was no longer an option. 

Since The Husband had class, I had to take The Boy on my own.  Which means not 1, not 2 but 3 buses to get there.   When The Boy and I left in the morning it was raining,  a little light drizzle but I decided to run back upstairs to get an umbrella.  The result: missing the 1st of our 3 buses.

Someone once told me that sensory gym doesn't do anything academically for The Boy, it just makes him a more well rounded person.  NOT TRUE!  The Boy is so much more focused.  So if it takes 3 buses in the rain, sleet or snow to get there - I go.  I'll walk if I have to - because I know that an hour in the gym makes a huge difference.  See for yourself ~

The Boy in the swing, engaged in listening therapy

 

In another swing, getting a little massage.  Notice the dim lights.  With the music.

After 15 minutes of the swinging and a brush massage (I watch with envy, wish someone would give me a brush message to help me relax).  It's time for the rock wall.

"To infinity and beyond!"

After doing this a few times, The Boy is ready to write.  

The Boy with the OT - drawing a boat

The OT's boat is on top.  The Boy copy of a boat.  His is right under.  GOOD JOB!

When we left the sensory gym - it was snowing.  And I was happy The Husband was picking us up. 

View from the car. The Boy told me it was "Christmas time!"

After the sensory gym, we have lunch at our favorite neighborhood restaurant where The Boy loves the Horchata. 

Just another day in our city!  

What's a Sunday like in your City?  Unknown Mami wants to know!  Go on over to Sundays In My City.              

And The Dept of Ed Does It Again...

2,500 kindergarten students have no appropriate school placement  for the fall.
The DOE missed the June 15th deadline. 

Read more:  

$79 million special ed program's technical difficulties blamed for delay in kindergarten seating.

Earlier this year (April) the DOE rolled out a new program called SESIS - a Web-based system for tracking students with disabilities, called the Special Education Student Information System (SESIS).

The program is supposed to ease the schools' delivery of services for disabled students by providing a system for tracking students' needs, but some teachers say it's riddled with problems.

They say they never received proper training, schools don't have enough bandwidth to run it properly, and they wait up to two hours when they call the program help line.

"It's impossible to know how many kids throughout the city aren't getting services because of problems with SESIS," said Julie Cavanaugh, a special education teacher at Public School 15 in Red Hook, Brooklyn.

 "It's not functioning properly - there's a serious flaw in the design," said Cavanaugh, adding that it's taking her twice as long to create records for students with disabilities using the new system.

And basically what it comes down to is: poor planning and lack of basic training. While the DOE and New York State cry broke, slashing budgets and cutting funds, implementing SESIS mid-year was reckless, completely inefficient and an extreme waste of money.  

Luckily The Boy has a place for kindergarten.  But my Turning 5 meeting was kind of a nightmare.  And it was confusing.  Not for me, but for the educators, psychologists and social workers running the meeting.  I mean, no one really seemed to have a clue.  There was a lot of questions and "I'm not sure" and running out of the room to ask someone else.

But let's get back to the 2,500 kids who have no place to go in September. If the the DOE fails to provide appropriate placement, the kids may be provided with a Nickerson Letter.*  Getting the Nickerson Letter is like hitting the lotto; it allows kids to a private school education for one year.  Sound great?  No - it's really not.  Because we're in June, almost July.  And most likely, many of the schools that accept the Nickerson Letter will be full.  

And then what?  Crossing my fingers and hoping the DOE has a Plan B.

~~~~~~~~~~~~~~~~~~~~~~~~~~
*Nickerson letter (only in New York City): If the CSE fails to offer your child an appropriate placement within 75 days from the date of request for evaluation, within 65 days from the date of consent to evaluation, or within 30 days from the day of the CSE review that made the program recommendation, the Board of Education should automatically give you a Nickerson letter. In this letter, the Board offers to pay your child's tuition at any state approved non-public school that accepts your child for the remainder of the school year, or, if you enroll after April 1, until the end of the next school year. With the Nickerson letter, you will receive a list of the schools in which you may enroll your child. You should be aware that this list of schools is limited, and a Nickerson letter does not guarantee that you will be able to find a place in one of these private schools for your child. If the CSE offered you a site or sites, but you feel their recommendation was inappropriate, you may also request a Nickerson letter from the CSE, but it will be more difficult to obtain one.  

TTLG: "Me? Courageous?" by Patty O. of Pancakes Gone Awry

My friend called me courageous today. 

Me. Courageous.

I don’t think anyone has ever called me that.

I’m kind of reserved, a book worm, if you will, and I am definitely not the life of the party.

I am deathly afraid of heights and would never, ever go bungee jumping or hunting in Africa.  I’m not much of a thrill seeker.

No, I’m just stay-at-home mom of three kids, one of whom happens to have autism.

A mom who sees a huge need in our area and has decided to do something about it.  We have no social skills group in our town, though there are plenty of kids who desperately need one. 

Instead, I have recently decided to start a social skills group in our area myself.  One that uses LEGOs to teach kids to work cooperatively.  I found a center that will train me in this program, but it costs money. 

A lot of money. 

This is why I applied for a Pepsi Refresh grant; the money I win from this grant will cover training and many of the supplies I need.

It is because I started this project that my friend, who happens to be the most active autism advocate I know, called me courageous.

My first instinct was to deny her compliment.  Who, me?  Courageous?  Pffft.  Not me!

But the more I thought about it, the less I dismissed her opinion.  I realized that parenting a child with autism does take courage. 

It takes courage to take your child in for a diagnosis and listen white knuckled as some stranger puts a label on your wonderful little boy. 

It takes courage to seek out help for your child, to take her to numerous therapists and specialists and to follow their advice.

Taking your child to a birthday party takes levels of courage I imagine would be necessary for going to war, because you know things could turn ugly faster than you can say “Sensory Meltdown.”

Courage is imperative when you sit your child down and explain his diagnosis with him, desperately trying to convince him that he’s not strange or weird or bad in any way, that he’s just different.  

You need to be brave when your child has been made fun of because of her differences.  And it takes courage to do your best to convince her that she’s perfect just the way she is.

Courage is a necessity as you fight the schools to ensure your child gets the services he needs.

And I suppose it is brave when you decide to quit waiting around for the system to provide the services your child needs.  When you take matters into your own hands and start a support group or a play date or a LEGO social skills club.

So, I will no longer scoff when someone says I’m courageous.

Because I am courageous. 

And so are you.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Please consider voting for my Pepsi Refresh Project.  Throughout the month of May I need as many votes as possible, so I can win the $5,000 grant which will pay for my training and supplies.  Thank you so much!  To Vote Now click on this link.

Patty O. is the mother of 3 kids: a 7 year-old boy, a 5-year-old daughter, and 2 year old son. Her oldest son has Sensory Processing Disorder and is on the autism spectrum, while her daughter also has SPD. Patty is currently stay at home mom, but used to be a college and high school English teacher. Please follow Patty at Pancakes Gone Awry.

The $93,000 Question

The Boy willl enter Kindergarten in the fall. 
We've applied to 8 schools. 
We've been rejected from 3. 
2 are still pending but highly unlikely we'll get in - considering the 3 schools we've been rejected from.
1 (my top choice) is still pending but since I've made 2 calls and sent an email and haven't heard back.  I'm doubtful.
1 is still pending but it's charter school lottery.  
We were accepted into 1 - Let's call it the "Money Bags School"* 

And the tuition for the Money Bags School is $93,000 per year.  That's right, every single year The Boy goes to the Money Bags School will cost us $93,000.  The school goes up to 21 years old.  Let's do the math on that.  If The Boy were to attend the Money Bags School for the next 16 years it would cost - are you ready? - $14,880,000. And I'm not taking into account tuition hikes.  So the cost could easily (and will mostly likely) increase.

To put things in perspective.  Harvard Graduate School of Education costs about $62,000 per academic school year.  HARVARD.  GRADUATE SCHOOL.

But wait.  There's more.  More?  Yes!  More.  In addition to the tuition fees, we will need to obtain an attorney.  So that we can sue the Board of Education for tuition reimbursement.  An attorney will cost anywhere between $4,000 - $10,000.  And suing the Board of Ed ain't a one time deal.  It's every single year.   

Now the Money Bags School doesn't expect parents to pay the full tuition amount up front. To guarantee The Boy's seat, the deposit is $10,000.  

Now this is the $93,000 question - or I guess, $103,000 question (including attorney fees):

CAN WE AFFORD THIS?   

HELL NO! 

But - there is something called Connor's Funding. (<-- link to interesting blog post regarding Connors) Now, I'm not an expert** on this but this is my understanding of Connor's and how the Money Bags School exlained it to me.  If a family's total income is less than $200,000 per year, they qualify. And Connor's is something we absolutely qualify for.  So this is how it would go:

• I can either pay for the deposit or take out a Sallie Mae loan to cover the deposit. The Money Bags school will hold off on recieving full payment
• Obtain an attorney
• File an impartial hearing/sue the Board of Ed for tuition
• If we win - the Board of Ed pays tuition to the Money Bags School (anywhere between 90 - 100%).  We may or may not get reimbursed for the deposit.
• If we lose - appeal the case and this will cost more money.  

And we have to do this every single year.  Let's do the math on this.  If we retained an attorney every year for the next 16 years at $6,000 per year and took out a Sallie Mae loan for $10,000 every year for the next 16 years.  The total would be: $256,000.  However, that would not include interest rates or any other additional fees - so let's boost up this total cost up to $350,000.  But I guess, in the grand scheme of things $350,000 is so freaking cheap compared to $14,880,000.

So the next question is: can we afford the $16,000 (deposit + attorney fees) per year to get into the $93,000 per year school? 

No.  Not unless we want to eat tuna fish and PB&Js every single day. Not unless we never want to take The Boy to a movie or buy him a toy or book just because. Not unless we cut every possible corner, because every single extra in our lives would have to go. And that makes me feel pretty crappy.  Like it's a personal failure.  Because we're not willing to make that kind of financial sacrifice.  I'm not a gambling kind of gal - and the Money Bags school will be a huge financial risk - especially in this economy where no ones job is guaranteed. 

And we need to sit down and go over the numbers again for the 100th time and ask ourselves: Is it worth the risk?

We have until the 10th of April to give the Money Bags school our final answer.
                    

*Obviously the name of the school isn't the "Money Bags School" but on the off chance I win the lotto or have a long lost distant rich relative die and leave me with their fortune and I can afford to send The Boy here - I don't want to piss them off.  

**Again, I'm not an expert, a lawyer, advocate - I'm just a mom figuring this stuff out too.  Please do your research and consult with an attorney/advocate to see what's best for your family.  This is just my experience and beliefs.  :) 

     

It Takes a Village (My speech given at St. John's University 1st Autism Awareness Month event)

When Alissa (the founder of Sprinkles of Hope) first asked me to speak, I was surprised and flattered and nervous.  I thought to myself – what am I going to talk about?  Writing a blog, updating my facebook status or tweeting is one thing – addressing an audience is another.  For the last 3 weeks I’ve been thinking about what I wanted to say – something that would be inspiring and hopeful. 

But last night I came home after a long day of work and a two-hour session of sensory gym with Norrin and I received another rejection letter from a school.  We’re in the Turning 5 process and it’s the 3^rd rejection letter we’ve gotten this month.  Our Turning 5 meeting was canceled the week before it was supposed to take place and I have no idea when it will be rescheduled.  And I have no idea where Norrin will go next year for Kindergarten.  It seems the decision is out of my hands.

March has been a tough month.  I’m far from inspired or hopeful –

I am frustrated.

A few months ago, Dr. Oz featured a show on Autism.  The parents Dr. Oz focused on described their life as “a nightmare,” and their children as “broken.” And Dr. Oz spent a great deal of time on “what causes autism.”

I don’t care what causes autism.  We are beyond that conversation.  The conversation that needs to happen is: How do we provide the proper support and services for our children. 

Autism itself is not the “nightmare.”  The nightmare is dealing with the Board of Education, budget cuts, and insurance companies, Medicaid waivers, never ending waiting lists, lack of services, lack of awareness and lack of acceptance.

The nightmare is calling an agency for services and hearing “Sorry – we don’t service the Bronx.”  Or calling the only after school program for children with autism in The Bronx and being told that there’s not only a 1 – 2 year waiting list but due to budget cuts – the program may terminate by September. 

The nightmare is the financial strain autism puts on a family.  Paying for private evaluations or therapies that insurance companies won’t cover or lawyer’s fees to secure appropriate school placement because our children are not entitled to the best.  Or families taking out 2^nd mortgages to pay for private school tuition – hoping the Board of Ed will reimburse them before the next years tuition is due.  The nightmare is pulling your child out of that program because the Board of Ed hasn’t paid you back and your money has run out. 

Our children are not “broken” and they don’t need to be fixed.  They need to be taught in a way that they can learn.  Considering we’ve been rejected from three schools this month, I am starting to wonder – who will be able to teach Norrin in the way that he can learn.

I’ve been told that I should move – to Queens, Long Island, Westchester or NJ.  Anyplace with a better school district.  But moving shouldn’t be an option.  Or a solution.  And even if I could afford to move, what about the other kids in the Borough that are left behind?

There is talk about restructuring Early Intervention – having parents pick up a percentage of the cost.  When Norrin was diagnosed 2 ½ years ago, we bombarded him with Early Intervention services.  We had a service provider in our home 5 – 6 days a week in addition to his center based program. 

At the time he was diagnosed – he had no language.  He couldn’t point, wave, make eye contact or sit still long enough to complete a simple task. 

But after months of intensive therapies – Norrin achieved all of those things and so much more.  His development has been amazing to watch and we never take a moment granted.  Every milestone is celebrated.  And there are moments, when it’s very easy to forget that there is a diagnosis, moments when he is just a boy and the words - typical or atypical – do not exist. 

The diagnosis has not defeated me, but the system comes dangerously close.  So while navigating the labyrinth of the Special Education System is financially and emotionally exhausting – hope sustains me.

When Norrin was first diagnosed we didn’t know anyone who had a child with Autism.  No friends or family member who can speak from experience and say – your child will be okay.  And there was no greater moment of isolation.  We had to create our own network.  And years later, my blog – AutismWonderland – was born.

But since Norrin’s diagnosis – our nephew and my best friend’s daughter have been diagnosed with autism.  And I want them to have the same level of services that Norrin received.  Services shouldn’t become privilege or a luxury, our children need the services and they are entitled to them. 

We’ve all heard that old proverb “It takes a village to raise a child.”  When it comes to having a child with autism or any other special need – it really does take a village.  It takes a village to support our children and it will take several villages to maintain appropriate services.  One person or parent or therapist cannot fight a system.  It takes every single person in this room to create a village and advocate.  It needs to be a collective effort.  To call, write or email the Governor, Mayor, Cathie Black, Borough Presidents and other elected officials.  We need to tell them what our children need.  We need to become one big loud squeaky wheel. 

Tomorrow is the first day of Autism Awareness Month.  But for me, and many of us here – it’s every day.  And Norrin has shown me the difference a day can make.  So let’s make our every day count.  

(from left to right) Angelica, Kenia, Me, The Boy, Allie & Alissa

The Price of Advocacy

Yesterday I called a Special Education Advocate. Thinking, that if I can't find an attorney - I'll use an advocate for my Turning 5 meeting.  


Curious to know how much an advocate will cost?  Let me break it down.  


The Consultation - $450.  It's a 3 step process:

1. A face to face meeting.  
2. A review of all documents. 
3. Discussion of retainer and other fees.

If you don't wish to retain the services of an advocate, you also have the option of using them for one CSE meeting.  The fee? $750.  And there are no guarantees.  You may still need an attorney if it gets to an impartial hearing.  


Every day I realize more and more, that Norrin's future is completely in my hands.  And mine alone.  Without the aid of a Special Education Attorney or an Advocate.  I have to be both.  I need to be Wonder Woman. 

“If it means interfering in an ensconced, outdated system, to help just one woman, man or child…I’m willing to accept the consequences.” -Wonder Woman #170