How Autism Impacts Minorities

Dr. Sanjay Gupta and Everyday Health explores how Minorities are disproportionally impacted by the rising autism rates. With less access, it could drive up healthcare costs for all in the long run.

Oh...and I'm also in the video.

You can read the article - Autism Strikes Some Families Harder Than Others - on Everyday Health.

Just to clarify some things in the video:

* Norrin was still getting home base (and center base) services from a SEIT (Special Education Itinerant Teacher) between 3 and 5 years old through CPSE (Center of Preschool Special Education). Unlike like our Early Intervention experience where we got really lucky with an amazing therapist, we went through 6 SEITS in 2 years before hitting the jackpot with a really great person. One SEIT quit after 3 days because of parking (she was used to visiting homes, where she could park in a driveway) and another SEIT told me, "my husband has concerns about me coming to this neighborhood." One agency dropped me after I expressed concerns/complaints about a SEIT.       

* Norrin was placed inappropriately during his kindergarten year. That was the year I had to sue the Department of Education because the school failed to provide an Occupational Therapist. After 8 weeks of paying out of pocket (totaling $1250.00), I was given a waiver letter to continue outside OT services and no longer required to pay out of pocket. The OT was able to bill the Department of Education. I sued the DOE for full reimbursement for the money I spent on OT and later that year, I had to sue again to have Norrin removed from the school. 

* For the last 2 years we've been paying out of pocket for ABA therapy at home (after school) from an agency called Center for Autism and Related Disorders. We use our medical insurance to pay for this therapy. I am very lucky to have a job with really good health insurance coverage (we have an autism advocate that helps file medical paperwork) and thanks to the Affordable Care Act, I live in a state with autism coverage.    

* Over the last five years, I've read many books that were helpful and inspiring. However, they are predominantly written by white, upper middle class women who were able to either move, hire an attorney and/or quit their careers to stay home with their children. These were not options for me. And reading these books in the beginning, I felt as if Norrin would never be able to "get better" since I could do any of the things I was reading about. I now know better.   

Sometimes Things Fall Apart...

"Sometimes things fall apart so better things can fall together."

(not sure if this is the exact quote or who even said it.)

The other day one of my FB friends posted this quote or something similar (I can't remember exactly) as their status update.  And well, I certainly hope this is the case.  Because lately things seem to be falling apart.

There is so much uncertainty lately.  Well, if I'm going to be completely honest - there's been uncertainty since The Boy's first day of kindergarten.  I remember this time last year, feeling tangled in red tape, overwhelmed and unsure as to what would happen in September.   

And so much has happened this school year.  Things I cannot write about.  But I will say this.  It's been incredibly disappointing.  And frustrating.

And while The Boy has come so far since September and I'm please with his progress.  I'm still at a complete loss. 

And I have raised questions and concerns that go ignored and unanswered.

And I have become cynical.  And I have lost both faith and respect in the New York Board of Special Education. 

And that's unfortunate because I wanted so hard to believe that ultimately - people will do right thing by a child with special needs. 

And bottom line.  More often than not.  They don't. 

Children are no longer children but a number in a broken system.         
 
And then last week - I stood in the rain for an hour.  Waiting for The Boy.  With The Boy's ABA therapist (that I pay for privately).  Needless to say, The Boy lost an hour of therapy. 

And when I called the school bus matrons, I was told that 2 more children were added to the route. 

And I could hear The Boy in the background - his high pitched perseverating speech.  And I knew he was confused.  Nervous.  Unsure of what was happening because The Boy memorizes routes.

The Boy is put on the bus at 2:20 pm (I think this is the time.  Though when I called The Boy's school to confirm, no one seemed to know.  But they did tell me, the bus is often late.  But that's for another post...)  And he didn't get home until 4:45 pm.  That means my 6 year old autistic child was on a school bus for 2 hours and 25 minutes.  And the matrons told me that 4:30 - 4:45 would be his new drop off time.

And I'm supposed to shut up and be okay with it?  Oh Hell Motha Effin NO! 

The school is less than 6 miles away.  He just turned 6.  He's autistic.  He has a 6 hour school day and over 4 hours in commuting each way.  I'm sorry, I don't want to be on a bus for more than an hour - let alone 2! 

So I wrote a letter to the person in charge of Office Pupil Transportation (OPT). 

And I may have cc'd the Borough President.  And um...The Chancellor.  (Because you know, me & Dennis are cool like that.)

They are working on it and The Boy has been getting home a few minutes earlier every day.

And you know what the OPT dude had the nerve to say that it wasn't necessary for me to cc those folks. 

Well...I beg to differ.  I will cc whoever it takes.  I will call and write whoever I need.  And I will do whatever it takes.  To make sure that The Boy's needs are being met.  That he has the appropriate services he needs.  That is my job.

And even when the NY Board of Ed & OPT don't do their jobs - that's fine.  I will continue to do mine.

So let things continue to fall apart.  Mama's putting it back together. 


(Yeah...um, this post is kind of all over the place.  But I have lots going on and my mind if sort of all over the place too.)         

         
 

The IEP

For those of you not in the know - the IEP stands for the Individualized Education Plan.  The key word being I N D I V I D U A L I Z E D.

You see, when you have a kid with special needs, all of a sudden you become part of this team of therapists, special education teachers, social workers and psychologists.  This Special Education team that will discuss and determine the Individualized Education Plan for your child.    

However, the IEP meetings that I've walked into, I've always been made to feel as if I'm just there to sign the forms and be on my merry way.  And during more than one meeting, I've said - are we creating an Individualized Education Plan or a Generalized Education Plan?

Because when I've requested an additional speech session or OT at The Sensory Gym in addition to OT at school, they say "Generally, we provide...blah blah blah..."

Remember  - it's a dollar and cents game.       

Ever since The Boy's diagnosis in 2008, I've had to fight for services and fight to maintain.  And fight, I will.  Because if The Boy needs something.  You best be sure, I'm going to do my damnedest to get it.  And while I loved The Boy's progression.  I know that for every single step forward, the DOE (Dept of Education) is ready to take something away.  

I'm not a difficult person by nature.  I'm not confrontational or argumentative.  I'm a happy go lucky gal.  Super easy to get along with.  I can make friends with anyone.  But when it comes to The Boy?  And what he needs?  I will fight.  Because it's for him.  Isn't that my job?  As his mother.  

And I'm not making this IEP stuff up. It's the law.  BY LAW - The Boy is entitled to FAPE guaranteed by IDEA.  (for those of you not in the know - FAPE stands for Free and Appropriate Education and IDEA stands for Individuals with Disabilities Act).  

Okay - enough alphabet soup and back to the IEP and the point of this post. 

Lizbeth of Four Sea Stars wrote a great post, Anatomy of Classroom Desk where she  posted a photo of her son, Alex and all this stuff around his desk - to make his day easier.  And it's on his IEP. 

When I saw it, I said to myself - damn, why didn't I do any of that?  Oh well, the upside to IEPs is that they can get revised at any time.

And Lizbeth's posted prompted THIS IEP MEME.    

So, I here I go.  

My last IEP meeting was a joke...But if you're up for a laugh.  Because sometimes you just have to laugh.  You can read it here.

1. There are no tools on The Boy's IEP.  None.  I provided the school with a squishy pad to sit on.  I provide boxes of gum and squishy toys.  Do they understand why he needs these things? Do they use it?  Does it work?  I have no idea.  I've been pushed out of the loop of communication.  The Boy's OT suggested headphones to help The Boy cope but since I don't know whether or not they will use it during the day - I haven't bothered to purchase them.  The Boy's class does have a visual schedule posted but I'm not sure if he has one on his desk.

The Boy does have a BIP (Behavior Intervention Plan).  But I'm not really going there with that one and again - I'm out of the loop.   

2. The Boy receives Speech 3x30; OT 3x30 and PT 1x30.  The Boy attends a "regular" public school but is in a "specialized" class for children specifically with autism.  It's a 6:1:2.  (The Boy also has 8 hours of ABA at home.  This is not on the IEP - we pay for this privately.) 

3. Since The Boy has started kindergarten at this school, I have seen progress.  However I'm not completely convinced it's due to his school placement or services.  I'm not convinced of their effectiveness. 

The speech therapist is really nice, very enthusiastic - which is great to see.  However, she is doesn't have a background in autism - she's learning.  And The Boy's services are in a group of 3 - he needs to have at least 1 individual session.  The speech therapist recommended this too.  But since she's the only one for the entire school, she does not have room in her schedule to provide a one on one session. 

As for OT - The Boy was not provided with OT services at school for the first few months.  The school did not have an OT.  (I was paying for OT sessions privately) When I requested an RSA letter, I was initially told to call 311.  We finally have an RSA and we have a fabulous OT.  And I am certain that she is effective when working with The Boy.        

What I do find most effective is not on the IEP - is the BCBA/ABA therapists that come to our home.  We pay for this privately but it's worth the sacrifice and I'm fortunate to have really good insurance.

    

The Autism Misdiagnosis

Back in July two articles came out that ruffled my feathers: 

Faking Autism Diagnosis - "Parents are seeking the autism "label" because funding for the condition has increased and more assistance is available for autism than for other conditions."

Autism: "A Popular Fad Diagnosis" - "The most likely cause of the autism epidemic is that autism has become fashionable – a popular fad diagnosis. Once rare and unmistakable, the term is now used loosely to describe people who do not really satisfy the narrow criteria intended for it by DSM IV."

These articles ruffled quite a few feathers actually.  For good reason.  For parents who are absolutely certain of their child's diagnosis, it's insulting for autism to be called a "fad." I am certain of The Boy's diagnosis. Hearing it wasn't a surprise.  

But I've spoken to other parents who have said their child was given an autism diagnosis (by medical professionals) just so that their child may get the services.  Even when The Boy was going through all of his initial evaluations, I heard The Boy didn't really need physical therapy.  But I was told, "It's better to have it and not need it than to need it and not have it."  I think this seems to be the general consensus when (mis)diagnosing children with autism. 

As parents we want the best most appropriate services to help our children succeed.  Except those services are dictated by diagnosis.  So if your child has a Learning Disability or mild Intellectually Disability - an Autism diagnosis/classification may be the way to go.  Simply because autism is the magic word for receiving necessary services. 

Classifications never really bothered me until recently.  As I went through the Turning 5 process I began to understand the significance of proper classifications.  And now, with The Boy in a specialized Kindergarten program, I realize how critical an accurate diagnosis/classification is.

As I was touring schools last year, I heard a lot of "We accept children with an autism diagnosis, but we do not accept the autism classification."   

How does this even make sense?  It was explained that while some schools accept children with a medical autism diagnosis, the classification on their IEP must reflect something else - usually Learning Disabled, Speech Impairment or Other Health Impairments is assigned.

This leads me to wonder whether or not these children are actually on the spectrum. Are these schools simply accepting the "easy" autistic kids?      

And so, when I look at some of the children selected or rejected for the Horizon program, I have doubts.  When I look at the children going into, not accepted to or being counseled out of the NEST program, I have questions.  Does the Department of Education understand autism?  Are they prepared to handle this population of children who need specific teaching methodologies and therapies (Occupational and Speech).    

I get that autism is a spectrum, a complex neurological disorder.  But aren't there consistent commonalities?

The New York Department of Education seems to be creating these programs for children with autism, however the children selected may not have an autism diagnosis.  And the programs sound great in theory, but when put into practice there are too many loose ends and not enough education or staff support. 

When The Boy's teacher told me on the first day of school that The Boy "didn't want to make friends,"  I was taken aback.  Because the class is supposed to be for children with autism.  And typically children with autism lack the "ability to socialize or form relationships."   

When a child is misdiagnosed with autism and goes into a classroom environment with children accurately diagnosed with autism - the perception of autism becomes skewed and the reality of the diagnosis becomes compromised.

The saddest part about all of this is that, it's all done with the best of intentions.  But somewhere along the way, there is a huge disconnect.  And children are left behind.

Keeping an Open Mind

Last week I wrote a post about Assumptions - well, today was the first Parents Association meeting at The Boy's school.  I was pleasantly surprised.  I met two AWESOME moms whose kids are in the ASD Horizon program with The Boy.  And I was reminded of all the reasons why I was so impressed with the school.

Last week I made assumptions of my own.  And I should know better.  But I think as a Special Needs parent, I have become jaded against the Board of Education.  I think at times, it's easier to believe that they will fail before given the opportunity to succeed.  I think that I have built a wall of protection, with a guard and a wrought iron fence around me.  Today I was reminded - I need to work at tearing down that wall.  Or at the very least, giving the guard a break.      

It's been a rocky beginning for all of us.  Just as The Boy is having difficulty with the transition.  So am I.

All this week, I've been in communication with the teacher and more importantly the Principal.  She truly is a dedicated professional.  And I feel reassured that they will do their best to help The Boy. 

I remembered what both the Teacher and the Principal said last May when we met.  They were clear to tell me they weren't promising miracles.  And I remember saying, I didn't expect any.  All I wanted was for The Boy to be given a chance.

And that's exactly what they're doing.

So for now, I'm keeping an open mind.  In the end, it really may not be the most appropriate placement for The Boy.  But I will know that they tried.  And that's all I ever wanted them to do.            

Building a Dream School

I've been thinking about this for while.  Especially once the Turning 5 process began and all the schools I was considering were in the City, Westchester, Queens, Brooklyn, Long Island. 

Aside from the District 75 schools and the ASD Horizon/Nest programs, there is not a single school dedicated to children with autism in The Bronx.

Let me be more specific.  There is not a single school dedicated in The Bronx for children with autism like The Boy.

The Boy is somewhere in the middle.  And so many children fall into that category. Bright kids.  Sensory seeking kids.  Kids who don't how to make a friend.  Or carry on a conversation.     

What I discovered last year while touring, applying and talking to directors of these special needs programs is that while they accept the autism classification, they do not accept children with behaviors.

Think about that for a second.  A child with autism.  With no behaviors.     

After being rejected from so many schools, I had a candid conversation with the director of my dream school.  She pretty much said, if The Boy didn't have any of his behaviors, if he didn't need the constant redirection - he would have been accepted.

Last night I recieved a call from my friend Gen.  She also happens to be The Boy's former ABA therapist. (She is also pursuing BCBA certification.)  She knows everything we've gone through in the last year.  And she said, "It's great that you write your blog, but we need to really do something."

Gen wants us to start a school in The Bronx for kids like The Boy.               

The Boy needs a school where they follow a combination of ABA and TEACCH.  The Boy needs a school with a sensory room, with an OT who is on staff not contracted.  The Boy needs a school with speech pathologists and Behaviorists and Special Education teachers and assistants who have a true understanding of autism.  The Boy needs a nurturing environment.  The Boy needs a school with sensory friendly classrooms.  The Boy needs a school that involves the entire family. 

Does this sound like the kind of school your child needs?  
Well...Let's create one.  WE need to "be the change that [we] wish to see in the world."

Yeah, I know this seems like a pretty lofty idea.  But every dream starts somewhere.

If you live in The Bronx, if you're a parent of a child like The Boy, if you're a service provider, teacher, therapist and social worker and are interested in our "Building a Dream School" project, email me at autismwonderland@gmail.com


*This post was inspired by many events that have happened over the course of the year and by a Kick in the Blog.   
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
 At first, dreams seem impossible, then improbable, and eventually inevitable.
~  Christopher Reeve

Any dream worth dreaming, is worth the effort to make it some true.~ Evan Gourley


Never give up on a dream just because of the time it will take to accomplish it.
The time will pass anyway.
~  Unknown

The People We've Met Along The Way

This last week, I've been reminded of how much progress The Boy's made.  Like the other night when he sang "If You're Happy and You Know It" at 4 in the morning.  How amazed I was that he was able to sing the whole song and do all the steps simultaneously - effortlessly.  

I think about how when The Boy started  Early Intervention he had no words or way of communicating.  How he gradually acquired five words, then ten and now - three years later - he has enough words to carry on an argument. 

Me: How about Pizza for dinner?

The Boy: No.  How about another dinner?  I want Chinese rice.

And I think about all the hours of therapy it has taken him to get to this point.

  

All the people at school.  All the teachers, therapists and aides that have held his hand.  The revolving door of therapists coming in and out our home.  All the extra related services.  All the Board of Ed officials that I spoke to, faxed, emailed or argued  disagreed with.

All the people we've met along the way to help The Boy.  And us.  

All the people that provided advice.  Offered suggestions.  Gave us support.  All the people who listened.  Who let me cry in their offices.  Who willingly gave their time and energy to talk to me, answer my questions and address my concerns. 


All the people who were so patient in teaching The Boy, the most basic of tasks.  


All the people who rejoiced in The Boy's achievements as much as we did.  All the people who advocated for us.  All the people who assured me that there was hope, that The Boy had potential.  All the people who told me, everything will be okay. 


It wasn't one person, one program or one therapy.  It was a collective effort to get us to this point.  We could not have done this alone.  And I can't think of all the progress The Boy has made without thinking about the people we've met along the way.


How can I possibly thank them?  How can I possibly repay them?  There is no monetary value that I can place on that kind of assistance.  Or on the amount of gratitude I have.  And how can they possibly know the difference they've made in our lives? 

Yesterday was The Boy's final day of school. (read post here)  And after I put him on the school bus and walked away, I couldn't help but feel sad.  As if we were losing something special.  We've said goodbye to so many therapists over the last three years.   It still doesn't get  any easier.  The Boy doesn't really know the difference.  He's too young to value their importance as much as I do.  

I'm sure as the years pass, he may forget their names, their faces.  But I will remember.  And I will remind him.  The people that have walked into our lives, the ones I never expected to meet, the ones that changed our lives and the way we live - will never be forgotten.     

 

This post is included in S-O-S Best of the Best Edition 9: Therapy and Special Needs Kids. Best of the Best Editions are published on the 15th of every month.

Secretly, I'm Sort of Excited.

I know I've been going on and on about my anxiety over The Boy starting Kindergarten in September and losing all home-based services. (in case you'd like to catch up: One More Week of CPSE, I'm Not Ready & Hope is on the Horizon)  But secretly...I'm sort of excited. 


For the last three years, we've had a therapist in our home 5 to 6 days a week.  For the last two years, I've been schlepping The Boy up and down Fordham Road in the heat, sleet and snow - shoving him on one bus, dragging him off another.  We've had therapists in our home as early as 9 in the morning and at times until 8  at night.  We've rearranged work schedules, school schedules and personal schedules.  Our lives have revolved around therapists.

Imagine:  Your kid was up all night.  You've had 3 maybe 4 hours of broken sleep.  You manage to pull yourself out of bed and go to work. You're standing on a crowded platform train and strategizing how you will get a seat so you can get a few more minutes of sleep.  But there are delays, you stand the whole way into the city and you get to work late.  This throws your whole day off.  You have a crappy day at work.  Then on your way back home from work there are still train delays.  You come home exhausted and irritated.  All you want to do is peel off your clothes, take a hot relaxing shower, lay on your sofa and not talk to a single person other than your child and spouse - and only if absolutely positively necessary.


Except - you can't do this because when you walk in the door, a therapist is there working with your kid.  And you'll need to make yourself available to the therapist should they have a request or a question.  Maybe they'll want to show you something new that your child just did and that new thing will become the bright spot of your otherwise crappy day.  And you'll feel a little bit better.  Exhausted, but better.  And once the therapist leaves, you realize there's only enough time for a bath and a bedtime story.  Your crappy day is done and the only person that makes you smile, is ready to go to sleep.  

This is what the last three years have been like for us.

So yes, I'm nervous about what September will bring.  But I'm looking forward to getting my home and privacy back.  I'm looking forward to coming home from work, maybe taking The Boy out for a walk.  I'm looking forward to picking him from school and not having to rush him to a therapy session - maybe we'll go to the museum, library or out for dinner; maybe we'll pick up The Husband from work.  Or maybe, dare I say it: schedule a play date.


It doesn't really matter what we do, I'm looking forward to it being just us. 
  

ARTS Rx: Summer Social Skills Group in NYC

Earlier this week I was contacted by Lina Claire Meza-Murillo (MPS, ATR-BC, LCAT,CCLS
Licensed Creative Arts Therapist/ Certified Child Life Specialist).  She asked that I help spread the word about her organization. I am actually happy she contacted me - I'd love to sign The Boy up for this. And I'm more than happy to share this kind of information with parents. 

Lina runs an organization called ARTS Rx which provides Art Therapy, Music Therapy, and Dance Movement Therapy services to special needs children with ASD in the NYC area.

ARTS Rx has open registration for our 4 week Summer Social Skills Group Series for special needs children between the ages of 3-8. 

The Sunday program includes Art Therapy and Dance/Movement Therapy Groups. Art and Dance/Movement Therapy provide a non- threatening medium where unique outcomes are possible. They offer an integrated approach that combines hands-on creative arts experiences through the modalities of art therapy and dance/movement therapy with best-practice interventions to address treatment goals such as: Social Skills, Coping Skills, Communication, Sensory Integration, Attention Span, Self Esteem and Developmental Growth.

Sessions: 7/31, 8/7, 8/14, & 8/21

Time: 10am-11:30am

Group Size: Small groups with 8 participants maximum, Ratio of children to staff is no more than 2:1

Price: $35 per session/Sliding Scale Fee Available/50% Discount on Sibling Registration

Location: 39 West 14th Street, Suite # 508, NY, NY 10011

Easy accessible to subways: N,Q,R,4,5,6, to Union Square, F to 14th St./6thAvenue, OR 1,2,3 to 14th St./7th Avenue, Free Street Parking Sundays

Individual Sessions also Available.

For Registration Please Contact :

Lina Meza-Murillo

(917)596-8517Lina@ARTSRx.com

  *No compensation was received for this post.    

CLUE: The Autism Edition

What/who causes autism?

Me thinks it was Miss Scarlett (she was always my favorite one!) with the Lead Pipe (because lead just has a bad rap anyway) in the Billiard Room. 

I mean, isn't that what it's coming to these days.  Just this week I read three articles on the possible causes of autism.   

Fraternal twins with autism: Is risk in the womb?
BEWARE!  If twins run in your family or considering in vitro fertilization. 


Antidepressant use in pregnancy may raise autism risk 
Blame the mom (again). That's nice...a woman dealing with depression has one more thing to feel depressed/guilty about. 

New Study Implicates Environmental Factors in Autism 

This one is kind of my favorite.  Because if it's truly the environment - good luck trying to make changes.  I mean, there are still people who deny global warning.  Do you think they'd accept the link between the environment and autism?

Ultimately, I do NOT care what causes autism.  (And you all know, I could care even less about a cure.  4/4/11 post - A Cure? No Thanks, We'll Pass.)  Reading these articles is frustrating. Because I feel these articles do nothing accept promote more fear and guilt. 

Trust me, I can completely understand why some parents may want to know the cause.  But what will knowing change?  Knowing the cause of autism, isn't going to change the fact that The Boy has it. Knowing the cause isn't going to make our lives easier.  Knowing the cause isn't going to create programs, therapies or schools.  Especially when so many programs are losing funds and schools (Early Intervention) are closing and therapists are starting to pursue other career paths.  Knowing changes nothing.  So instead of trying to solve the mystery, I'd much rather know more about what will help my child.          

Wordless Wednesday: How Can You Help?

Came across this video a few weeks ago on facebook.  It's worth watching, especially if you're a Special Needs Professional, Service Provider or Teacher.  Thanks for sharing so many great stories Margie! To get your daily Autism News Post follow her blog:

Speaking on the Spectrum

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.  

A Sign of the Times: Losing Therapists

Last week our OT at The Boy's sensory gym told us she was quitting at the end of the school year.  She's taking another job.  

That kind of news is tough to hear.  Especially when you find a therapist that you like, one that works well with your child.  One that understands his strengths and weaknesses.  She's been working with The Boy since September 2009.  And now we have to find someone else.

It's kind of like breaking up with a long time love.  You know that it's the right thing to do.  It's just not an easy decision to make. But I completely understand.  She has a family of her own.  And she needs to get paid.  It's not easy working as a therapist under the Board of Ed. 

Most employees know when to expect their paycheck.  But therapists submit their bills and then have to wait for their checks.  Sometimes a few weeks.  Sometimes months. 

I mean think about it: How long can you go without a paycheck?       

And it's a complaint I've heard before.  Is it a sign of the times?  People do not want to deal with the Board of Ed.  People do not want to make phone call after phone call inquiring about when they will get paid.  Therapists/service providers are frustrated and fed up and leaving to pursue other job opportunities.  Jobs making more money.  Jobs that provide health benefits (because did I mention, the OT has no medical/dental insurance).  Jobs that have an actual pay schedule.  I don't think these things are too much to ask for or out of the realm of possibility considering the services they provide. 

So wake up Board of Ed - You're losing all the good ones!   

Guilt is Inevitable

I think while all mothers deal with feelings of guilt,

working mothers are plagued by guilt on steroids!
~ Arianna Huffington

Every Wednesday (since September) I leave work early (around 1 p.m.) to take the D train uptown to The Bronx.  Thirty to forty minutes later, I get off at Fordham Road station and I'm ready to RUN. My sprint begins on the Grand Concourse, all the way down Fordham Road and ends passed Fordham University. For those not familiar with The Bronx, Fordham Road, is a long downhill (or uphill) busy stretch of street with stores, street vendors, shoppers, baby strollers, shopping carts, school kids, solicitors and the occassional undesirable.



Fordham Road (Sabo/NY Daily News)



By 2 p.m., I pick up The Boy at school and then walk the three blocks to the bus stop.  Depending on the weather, my mood or amount of the time we're waiting - we can take the BX 9 or BX 22.  Either one we take, we'll still need to transfer to another bus - the BX 10. The buses at this time of day are packed with school kids, mothers, babies, elderly folks and other people going about their day. Sometimes we get a seat.  Sometimes we don't and I have to balance myself and The Boy on a crowded bus.  At some point during our trip, we'll get off somewhere, I'll grab a cup of coffee for myself and a snack for The Boy.  

Our occupational therapy at the sensory gym is at 4 p.m.  We usually arrive by 3:30 and we sit in the waiting room and wait.  The Boy's session is 2 hours so I make myself comfortable until The Husband picks me up at 6.  We're home by 7 and then I need to cook something quick, eat and get The Boy ready for bed. 

Last Wednesday I did something I have never done. I cancelled our session. No, he wasn't sick.  No, neither was I - not really.
  
It was raining and cold and I was simply exhausted.  During the train ride up to The Boy's school, I couldn't keep my eyes open.  Everything hurt.  And my body kept jerking itself awake.  All I wanted to do was go home, flop on my sofa and sleep. The thought of standing in the cold rain, waiting for two buses made my head ache.  So I cancelled.

I'm not the parent that casually cancels sessions.  I don't do it unless The Boy is sick.  I've traveled to sensory gym during snow storms and heavy rains and on much colder days.  So I hated myself for doing it last week, especially when The Boy started asking for it.  I had broken out routine.  And I had to explain to him that Mommy was sick.  Promising him cookies seemed to work.  And the session was soon forgotten.  But its days later and I'm still feeling the guilt of it.      

Because guilt is inevitable. It comes with the territory of being a mother. There are layers of it.  As a working mother - who is also in graduate school - I have an extra layer.  And as the mother of a child with autism, an extra two to three layers are added on top of that.  

Am I spending enough time with The Boy?
Am I doing enough? 
Why haven't I started the GFCF diet again?
Why don't I schedule more playdates?
Maybe I should try _______ therapy?  Aquatic?  Equine? Take your pick or choose from any of these here.

Obviously, I know that missing one OT session isn't going to make or break The Boy. And I know that not every single moment of our lives can be made into a lesson, session or life changing moment.  I try to remind myself that I am doing the best I can and that sometimes, when my body is tired - I have to let it rest.  Otherwise I'll be useless.  But still, this is easier written than believed. 


How do you cope with guilt?                           

Free talk on "Life After EI" this Monday, February 14

Does your child receive Early Intervention services? Is he or she turning 3 in 2011?

Come hear a free presentation by Sarah Birnbaum of New York Special Needs Support on how to:

• Figure out whether your child will still need services after EI
• Obtain the best evaluations and guidance
• Find an appropriate preschool
• Set up the right therapy and preschool program
• Get the best outcome from your CPSE meeting

Monday, February 14

6-8pm at Marymount Manhattan

221 E. 71st Street

, 2nd Fl., Peruggi Room
RSVP: csd@mmm.edu

For more information please visit Sarah’s website, http://www.nyspecialneeds.com.

If you know anyone whose child is turning 3 in 2011, please forward this on so they can attend a free talk, meet other parents in the same situation, and get crucial support and information about this upcoming transition.

Bouncing Back

“You punch me, I punch back. I do not believe it's good for ones self-respect to be a punching bag.” - Edward Koch 

I've been punched around quite bit in my life.  (Haven't we all?)  But since The Boy's diagnosis, those hits have always been the hardest to bounce back from.  It's because those hits give me this sense of overwhelming failure.  As if I haven't prepared enough for this moment - how can any expectant mother prepare for a special needs child?  

I understand why mothers quit their jobs.  It's all consuming.  And it never ends. Because unless you are extremely well off financially, your child's services are at the mercy of someone else.  And you always need to justify the need of service.  For every bit of progress a child makes, the likelihood a service will be taken away. Appropriate becomes an ambiguous word.

So this afternoon, as I made another promising phone call that ended up  being just a phone call, I felt like a Bozo the Clown.  Punched, pounded, the air kicked out of me.  Disappointed.  But most of all, defeated.

I can't help but wonder - how many phone calls will it take?  How many times can I hear: No, I'm so sorry; No, we can't help; No, try someone else.  How many times can a mother expect to be put on a waiting list?  And just wait.

I am physically tired.  I am emotionally drained.  I am special needs spent.  I am hoping this moment will pass.  Because I can't quit the job that pays me to devote every single waking second to my child. I will need to bounce back.  I have more phone calls to make.   

"What makes the muskrat guard his musk? Courage!"

"Put 'em up, put 'em up! Which one of you first? I'll fight you both together if you want. I'll fight you with one paw tied behind my back. I'll fight you standing on one foot. I'll fight you with my eyes closed..."


Going into meetings for The Boy, I always feel like the Cowardly Lion - I have the best intentions but there is always an element of fear and failure.  Because while I talk a good talk, I'm really a big coward.  I hate addressing a group.  I get shy and nervous and I can stutter and stumble over my words. During my first IFSP meeting, I learned that no matter how nervous I was, I had to put on my brave face and charge forward.  There is no place for fear. 


I also learned that you need to be prepared.  Going into my initial IFSP meeting, I had The Boy's evaluation in my hand - sections highlighted, pages tabbed, questions scribbled into the margins.  I knew it backward and forward.  And I was able to prove it when the EIOD suggested the minimum amount of services, I said "On page 9 of the eval it suggests..." - I got the amount of services I wanted.  


Since then, I've always been prepared to fight.  I've always armed myself with knowledge of the law.  So I wanted to share some of the links I've found that have helped me attain services for The Boy.  

1. Part 200 (Student with Disabilities) and Part 201 (Procedural Safeguards for Students with Disabilities Subject to Discipline) -- This has been extremely helpful; it is a PDF of the Regulations of the Commissioner of Education. (I found the link here.)  The document is long (about 200 pgs) but it's important to look through.  It goes through Due Process Procedures and the Board of Education Responsibilities and Definitions. I've noted sections in letters to CPSE administrators.  Let them know that you know the law. Please note there is a  disclaimer: These Rules of the Regents and Regulations of the Commissioner of Education ("regulations") are unofficial, and are presented for general informational purposes as a public service. 
2. "Creating a Quality IEP" - Individualized Education Program Manual  -- Another long document, but it takes you through the requirements and roles of the IEP.  As a the parent, you are an equal part of the IEP.  Sometimes I think administrators forget that and see you as a more of a formality rather than a voice.  Never forget that you have as much of a say as they do. You know your child best.  You've seen your child in every enviornment: school, home, with children, alone, with therapists.  You have an advantage that no one else in the room has.  
3. Advocates for Children - Turning 5: A Guide to Transition from Preschool Education to Kindergarten -- This document is about 30 pages and walks you through the process.  The document also lists the contact information for CSE within the 5 boroughs of New York City.  Advocates for Children can also provide legal service for families - however, services are based on financial need. It is my understanding that a family of 5 needs to be in the 50,000 annual income range.  Please note there is a disclaimer: This guide does not constitute legal advice.  This guide attempts to summarize existing policies or laws without stating the opinion of AFC.    

I also strongly reccommend purchasing Wrights Law From Emotions to Advocacy 2nd Edition -- this book is a MUST HAVE.  It offeres suggestions and provides letter samples, goals and suggestions. When Norrin aged out of EI (Early Intervention) and transitioned to CPSE (Committee of Preschool Special Education) I was told that home-based services were impossible to get under CPSE.  I fought for them, it wasn't easy.  But with the above referenced resources, I was able to justify the need for service. 


So it's okay to be scared.  That's normal.  I still feel nervous walking into a meeting.  But I always walk in prepared and that gives me a sense of courage.