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.

    

Autistic Today. Typical Tomorrow? (or Who will benefit from the proposed changes to the autism definition?

If you have a child somewhere, anywhere on the autism spectrum, you probably read this article by now.   If you haven't, here are what I deem as "the highlights": 

The definition [of autism] is now being reassessed by an expert panel appointed by the American Psychiatric Association, which is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders, the first major revision in 17 years. 

*

The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. “We would nip it in the bud.”

*

At least a million children and adults have a diagnosis of autism or a related disorder, like Asperger syndrome or “pervasive developmental disorder, not otherwise specified,” also known as P.D.D.-N.O.S. People with Asperger’s or P.D.D.-N.O.S. endure some of the same social struggles as those with autism but do not meet the definition for the full-blown version. The proposed change would consolidate all three diagnoses under one category, autism spectrum disorder, eliminating Asperger syndrome and P.D.D.-N.O.S. from the manual.

(I won't divulge my immediate reaction upon reading this article.  While in real life, I may have quite the potty mouth, I just don't write that way.) 
 
If the proposed changes are made, this will not impact The Boy.  He's autistic.  He'll fit the criteria today, tomorrow and quite possibly twenty years from now.  No ifs, ands or buts about it.

But it could impact many people I know.  And I know how critical services are to their families. 

What Do Services Have To Do With It?

I don't know how it works in other parts of the country/world?  But within New York City?  Diagnosis is EVERYTHING.  And even with a diagnosis, you still need to fight tooth and nail for appropriate services.  They're just not given out like candy.     

And if the criteria of diagnosis changes...so will the services.   Services like OT, PT and Speech.  And school placements in smaller classrooms or specialized school programs unfunded by the New York Department of Education.  

More importantly, how will that impact Special Education Laws?  What will become of appropriate school placement?

And when I think of my best friend's daughter who has a PDD-NOS diagnosis - a little girl who is at age level, cognitively but has speech delays and requires a smaller classroom setting. She's currently in a specialized preschool and receives OT and Speech.  If the criteria changes - will she no longer qualify for special education?  Will the DOE recommend she be placed in a typical classroom of 25 or more kids?  It's quite possible.  But it's not where she belongs.  And it's absolutely not where she will succeed.  (Not as of now anyway.)

For the last few years, I've heard about budget cuts to special education, special needs services and medicaid.  I've heard of agencies and schools shutting down and therapists moving on to other careers.  In areas like The Bronx, where services and therapists and finances are already extremely limited, what will families do to ensure their child gets the therapies they need?  Will their children have a chance?

And please don't me get started on insurance companies who will do absolutely anything not to pay for services...

As it is, The Boy has a diagnosis and my insurance still gives me the run around.  

Maybe I'm reading this article all wrong.  I mean, I'm not a doctor.  Nor am I business analyst.  I'm just a mom.  But to me, the only people who this may benefit from the diagnostic change criteria are government agencies.  

So MY Big Question is:

What exactly are they trying to nip in the bud?

~~~~~~
If you are opposed to the change - please sign this petition.
(petition started by the Mom behind The Aspie Side of Life)   

Friday Fragments (My First Time 11/18/11)

This is my first time, so please be gentle with me.

My first Friday Fragment, that is.  What were you thinking? 

Sometimes dealing with the Dept of Education makes me feel like a single girl again - desperately searching for The One.  

You may remember the routine. Getting dressed up. Going out to the bar/club with your girlfriends.  When suddenly an amazing looking guy smiles at you and buys you a drink.  He says all the right things.  All the things you want need to hear.   

And before you both have finished drinking your drink, you've created this entire movie montage in your head: courtship, proposal, wedding, honeymoon, big house, 2 kids, maybe a dog, growing old (surrounded by grand kids), until you both die on the same day holding hands, like that couple you read about in that yahoo article.  

You exchange numbers.  He says he'll call you. 

And then you wait.

And wait.  And then you decide to call, only to get his voicemail.  So you leave a message.

And wait some more.  And you call again because maybe he lost your number, or didn't save it into his phone properly or accidently deleted your voicemail where you left your number again.  So you leave another voicemail and wait...

Until you realize the phone call you've pinned all your dreams on, is never going to happen. He's not The One.  And the promises made during that brief encounter, were nothing but words.

So was it good for you?  If so, play along! 

Check out Mrs. 4444 at Half Past Kissin Time for more Friday Fragments.

     

 

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.

Post it Note Tuesday: Notes from the Notebook

Yesterday I came home after a long day of work.  I was hesitant in picking up The Boy's communication notebook, afraid of reading what the teacher had to write about The Boy's day.  While I was hoping The Boy had a good day, I honestly wasn't expecting it.   

Shame on me. 

As I read the note from The Boy's teacher, I couldn't help but tear up a little.  

This morning, I wrote back to the teacher.  

I think this is a major turning point for all of us.  I hope the teacher goes with it.  Somehow, I have a feeling she will.    

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

Doubt

I can't tell you how often I've doubted myself along this journey.  How many times I've wondered whether or not, I've made the right decision.  How much weight I've put on every decision I've ever made since The Boy's diagnosis.  And I punish myself when a wrong decision is made.

There is always doubt.

Tomorrow is The Boy's first full day of school.  And I want to be hopeful.  Because I do really think it's a good program - in theory.  And I want to believe in the school and its teachers.  And if the program and teachers and therapists do everything they're supposed to do, The Boy could have an amazing year.

But there isn't a designated OT on site yet.  That's a MAJOR problem.

Not everyone on staff seems to be aware of the small ASD population. 

And it's in a Community (Public) School with Assembly's and recess and lunch.  And there are other kids.  Typical kids.  And what if The Boy has a complete meltdown during an assembly.  Will the staff be prepared to handle it?  Will the other kids stare? Make fun?     

What if this is my wake up call?  To get him out now.  I don't know.

Am I pushing him into something he's not ready for?

Am I just being overprotective and underestimating The Boy's capability?
One of the complaints you hear about the Board of Education is the lack of parent involvement.  But when a parent is involved they are viewed as "difficult" or "pushy." All I want is The Boy to have  an opportunity to do well.       

What Do You Do When A Special Ed Teacher Tells You "I Can't Teach Your Child."

Back in May, I wrote this post about The Boy's acceptance to the ASD Horizon program.

The Boy's 1st day of Kindergarten

Well Thursday was The Boy's first day of kindergarten.  It didn't go so well.  According to the teacher, The Boy poked himself in the eye with a crayon - TWICE.  According to the teacher, he banged his head on the table.  And scratched the assistant then tried to bite her. (I'm going to get back to the bite thing.)  These are not typical behaviors for The Boy.  He's not aggressive and while he has no sense of danger or body awareness, he is not self injurious.

But if you want to laugh.  And I have to laugh (through my tears) about this one - the teacher said, "He didn't want to make friends with the other kids." 

(Um...yeah.  Let that one sink in.)    

In The Boy's  defense, he was at his last school for 3 years.  And if you know anything about autism, you know - routine and consistency are crucial.  And I knew that the transition would be difficult for all of us.  I left that first half day of kindergarten, feeling unsure about my decision but still hopeful.

On the 2nd half day of kindergarten, I put The Boy on the bus and he went on willingly.  Because I'm a stalker mom, I went to the school and waited for the bus.  I wanted to see for myself how this school handled busing.  It went smoothly. 

I did the same thing in the afternoon. Showed up to the school a few minutes before busing to make sure all was okay.  The Boy went on the bus willingly.  I asked the teacher, if the second day was better.  Her response: 

I don't think I can teach him.

How is he going to learn if he can't sit still?

We'll give it a few more days but we may need to reconvene.  For now he's here on a probationary period. 

Wait - what?  Days?  Probation?  What about "I'm going to talk to the BCBA consultant." or "What methods have worked in the past?"  Nope.  After 2 half days of kindergarten, she was giving up on my kid.  

I wonder if that teacher knows how damaging and how devastating her words were to me.  How often I've replayed those lines in mind since she's said them.  How I feel like I've failed.  Or how heartbroken I am.  

 

How do you give up after just 2 half days?  How does a special education tell a parent their child is unteachable?  When there are have been so people in our lives for the last three years,  who have worked with us and with The Boy.  

If a teacher feels that way about my child, do I even want him there?   What if the alternatives are no better?

I couldn't even hold it in until I got home.  I cried the whole way home on the 6 train.  Willing the train to go faster because I needed to meet the bus in front of our building.   I slumped down, and cried - shoulders shaking, sniffling sobs.  With my big sunglasses, I must have looked like a battered woman.  And in a way I was, her words were like a knife in my stomach.  I don' think I've felt so  defeated.  Of course I didn't make it.  I got a call from the bus driver while stuck between stops.  And when I got off my stop - I had to run all the way to our building.  Which was interesting because I'm not in the best physical shape.

And when I reached for The Boy's hand, I noticed 2 stickers pressed in his palms.  They were the stickers I had given him that morning, to fidget with while on the bus.  Was he simply ignored?  Did they even try to engage him?  There are only 5 children in the class (including The Boy) and 3 adults.  I am at a complete loss. 

Monday is The Boy's first full day.  And I have knots in my stomach. I'm trying to breathe.  I'm trying to take it 10 minutes at a time.  I'm trying to get my mind and my game plan together.  Because I still have hope.  Maybe not in the school or in this teacher.  But in The Boy.  And I will never give up. 

*About the biting.  The Boy is a highly sensory seeking child.  He craves deep pressure particularly to the cheek/jaw area.  When frustrated he will press his fist into his cheek - usually his mouth will be partially open.  We give him gum to help redirect the behavior.  But if someone is holding his hand, he will use their hand to apply the pressure.  I could see where someone would think he was going to bite but he won't.  I wrote the teacher this in a letter and left it in his folder.  I sent a box of gum in his book bag too.  Both came back on Friday.  The box of gum unopened and the letter untouched. 

Assumptions

When it comes to kids on the spectrum, don't make assumptions.

Don't judge them in the first 5 minutes.
Not in the first 10 minutes either.  

Not even within the first hour or two.

One day last year, I was walking with The Boy and a woman tapped me on the shoulder and asked, "Can he talk?"

I know why she asked - The Boy was speaking in jargon, in that high pitched voice of his.  But still.  It was sort of rude to walk up to a perfect stranger and ask such a question.  After I said, yes and explained The Boy had autism.  The woman then proceeded to explain the importance of early intervention and services.  I let her talk.  

I'd like to add on the day this occurred, we were walking in the middle of a snow storm.  NYC public schools had closed.  But the OT at the Sensory Gym was available and so I bundled The Boy up so we could take the 3 buses to get to Sensory Gym.  So yeah, lady - I got that services are important. 

So what's the point of this little flashback?

The woman last year heard The Boy for 5 minutes and she was ready to make an assumption.  

I know people look at him while flapping, fumbling, mumbling or melting down.  I know strangers in the streets wonder why I whisper in his ear and smooth the small of his back, when they assume what he really needs is "some sense smacked into him." Because yeah - that's been said to me too.

But what they won't refuse to see is that The Boy is special and super bright and funny and really quite charming.  

The Boy is like a gift under the Christmas tree.  That strange shaped box that you look at and turn over and wonder what's inside.  The one you stare at for the weeks leading up to Christmas Day, guessing and second guessing.  Assuming it must be _______.   

And then it's Christmas Day and you open the box and you are totally surprised. Because it's so much better than anything you ever expected or assumed.  And you realize it was worth the wait.   

That's The Boy.  That's autism.

Prepping for Kindergarten (The Letter)

It's the last weekend before kindergarten begins.  And nervous is a complete understatement.  I am scared. Worried.  Anxious.  Excited.  I've been feeling all of these things all summer long but I will be honest.  I haven't looked at his IEP since our last meeting in June.  After that meeting, I put it away and took a time out from special needs.  And since The Boy's last day of SEIT/related services, I haven't done anything truly constructive with him.  

No.  We have not colored.  

Nope.  We haven't practiced our cutting.

Did we play turn taking games?  Memory? Hungry Hungry Hippo? Don't break the ice?  
Uh uh, we haven't done that either.

The truth is - we needed a break.  We needed a summer to ourselves.  To just be. To take a quiet stroll in the neighborhood without asking him to label objects.  To go to the playground without having him work on social skills.  To sit and watch TV.  Sometimes we'll talk but silence is okay too.  To chill out on the sofa.  The Boy, reading his book.  Me reading mine.  I did not want to be ruled by routines, even though I know, I know routines are crucial.  I wanted him to do what he wanted to do, when he felt like doing it.  Not having to cut his activity short because a therapist was knocking on the door.  I didn't want to spend our summer thinking about goals and things The Boy should try and "catch up on."  

There is time for all of that.  WE have time.        

But this weekend, I have to get down to business.  This weekend, I have a project: to write an introductory letter to The Boy's teacher.

Over the weekend, I'll review The Boy's IEP.  I'll take into consideration the goals he's made progress with (because even though I'm not keeping track - I am always keeping track).  And with that in mind, I'll write my introduction letter to The Boy's new teacher.

My letter will include: 

• backstory (when he was diagnosed; previous therapies)
• the progress he's made over the last year
• his usual disposition
• his strengths
• his weaknesses
• activities he enjoys
• activities that are frustrating
• items he'll work for
• our concerns
• any self stimulating behaviors (what he does/when he does it/how we redirect him)
• what goals that mean the most for us
• phone numbers and the best way to reach me, The Husband or my mother in case of an emergency. 

I wrote a letter for last year's teacher and she said it was extremely helpful for her.  It also works to your benefit.  Teachers will immediately recognize that you are an involved parent and it starts off the year on a positive note.  It says you are willing to be a true partner in your child's education.  And I believe partnership is crucial for progress.

I am going into this school year with an open mind.  I spent all of last year worrying and crying and stressing over finding the appropriate placement.  And the truth is, I would be apprehensive over any school The Boy was going to - even the ones I believed were  "the ultimate dream school."  In the end, it really did all work out - not without heartache, obviously but The Boy is going to kindergarten!  And I don't want my fear or anxiety to overshadow my excitement.

And if this school is not the place for The Boy, I've made peace with that too.  And I know what will need to be done.  But I won't worry about that right now.

Right now, I have a letter to write.  Uniforms to wash.  A backpack to organize.  And a haircut appointment to be scheduled (not for me...for The Boy) - that should be fun... 

 

        

  

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.

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!   

The Big One

Yesterday was the day.  The one I've been preparing for since October.  The one I've been warned about since The Boy's diagnosis.  The mother of all meetings:  The Turning 5.  The first of many meetings with The Committee of Special Education.  The induction into "school age" 5 - 21.   I walked in nervous, but confident since I was with "M" The Boy's teacher and "G" - our EI ABA therapist.  I went in prepared with notes, specific goals and my copies of Part 200 (Student with Disabilities) and Part 201 (Procedural Safeguards for Students with Disabilities Subject to Discipline) and the  Advocates for Children - Turning 5: A Guide to Transition from Preschool Education to Kindergarten.

Didn't matter. 

We arrived at 1pm.  And the meeting started off nicely.  The "Committee" consisted of a Social Worker, a Special Education Teacher,  a Psychologist and a Parent Member .  The Social Worker began by saying we will discuss the needs for The Boy.  The Committee were so impressed by The Boy's cognitive skills they initially thought he was could placed in a typical kindergarten class or a CTT (Collaborative Team Teaching classroom. CTT classes have a mix of students in general education and special education, and each class has two teachers, one with special education certification.)

Then they read the rest of his evaluations and determined: No Way - off to District 75!  They agreed a typical environment would be too overstimulating for The Boy.  He needs a smaller classroom setting.  And his socialization skills hold him back.  Two keys things to remember:  Socialization and Sensory Processing hold The Boy back from progressing. 

That's when I suggested the District 75 school that I toured and believed was the most appropriate.  I stated I called  a few other schools - one didn't have an OT.  The Boy cannot function in a school without an Occupational Therapist on site. 
  
Psychologist: No - we can't make that recommendation.  The Placement Committee does that.  Once you are placed you will have to call the school and see if they have an OT.

Me: If The Placement Committee recommends a school that isn't appropriate for The Boy, how long will it take before another is recommended?  

Psychologist: I don't know.  (She got up with a piece of paper and ran out of the room.  Ten minutes later she returned.)  Yeah, I don't know.

Me: Well -  don't you have to make a recommendation by the end of June?

Psychologist: Anytime before the end of the year. 

I pulled out my  Advocates for Children - Turning 5: A Guide to Transition from Preschool Education to Kindergarten  flipped to the page I needed.   

Me: June 15 - appropriate placement needs to be made by June 15th.

Psychologist: That date can be pushed back, we're really backed up.

Moving on...

We proceed to The Boy's related services.  The Psychologist reviewed The Boy's current related services.  She went on to approve the related services he would receive in September: Speech, OT & PT.  

Psychologist: Are you okay with that uh, uh Miss uh...

Me: Lisa.

Psychologist: Sorry - Miss Lisa.  Are you okay with that?

M: The Boy should have 2 group sessions of speech and 1 individual.  He needs the group sessions for socialization.

After a discussion, The Committee actually agreed.  But in the end it had to be changed to 3 individual  sessions because the 'new system' wouldn't approve it 2 group and 1 individual.        

My team  stated that The Boy needed OT to address his multi-sensory needs.  M stated that he NEEDED OT.  M & G agreed that The Boy didn't need PT as much as he needed OT.  Whatever his PT delays are, can be addressed through more OT.  

Me:  Currently he receives outside OT  at a Sensory Gym.  His evaluations reflect that it is a service that needs to be continued.  

Psychologist:  Whatever school he goes to, they will often offer workshops to help the parent deal with the autistic youngster.  

Um...wait?  Workshops?  Who the hell said anything about a workshop.  And wait?  Why does she keep referring to the boy as "autistic"?

Me: He has no sense of danger.  He is easily distracted.  He cannot function without appropriately without OT.  His OT services at a sensory gym need to be continued. 

The Psychologist runs out of the room again.  Returns a few minutes later.   

Psychologist:  Whatever school he goes to, they will determine what his needs are.

Moving on to goals...

This is when the fun really begins!  Apparently, the districts are moving to this 'high tech' computerized system.  So this whole time, the Special Education is sitting at a computer.  What are the Social Worker and Parent Member doing?  Hmmm...oh yeah, that's right - not a god damn thing.  Seriously.

The Special Education Teacher starts reading through The Boy's goals. 

Special Education Teacher: Norrin will demonstrate improved sensory processing in order to be more attentive during school activities.  

What the hell that even mean?

G laughed out loud.  M looked confused. 

M: Did you read through the goals from his last IEP?  Most of those could be carried over. 

The Special Education Teacher asks M to come over and type out goals.  So now, M is sitting at the computer typing out The Boy's goals.  We continue reading through.  But I have goals of my own that I want to add.  And by this time, M has gotten up and the Special Education Teacher is back in the chair typing.  But then she asks me to type in my own goals. 

I start typing.  

Special Education Teacher:  Wow.  You're fast, want to come back next week?  (giggle giggle)

They manage to skim through the rest of the goals.  And the Psychologist, Parent Member, Social Worker and Special Education Teacher clustered around the commuter trying to figure out how to print a copy for a good 15 minutes.  Then the Special Education Teacher and Psychologist start talking in Spanish and I have no idea what they're saying.  

Me: I'd like to leave with a draft copy to review with my husband before I sign off.  

Psychologist: It needs to be finalized now.  Otherwise nothing will happen.  You can read it now and just sign.

Me: No - I'd like a draft copy to review at home.  

We went back and forth for a few minutes.  Did she really think I was that parent to be pressured to sign?    

Psychologist: Okay, take the draft.  But it's final just not really final.  So let your husband read it and just call me up so I can finalize it.  

Home girl wasn't even entertaining the fact that I would have any change to it.  HA!  She's funny.  And I pretty much walked out with my draft copy because it was 3:22 and the Friday before Spring break.  Otherwise, I probably would have been pressured to sign it. 

So after 2 hours, we walked out without an appropriate recommendation for a school placement.  Without the proper support.  Without appropriate goals.  And more importantly without a Behavioral Intervention Plan. The Social Worker stated that we were there to discuss the individual needs of my child.  However the Psychologist had everything written down 

And where was the woman who originally scheduled the meeting?  The one I left 3 voice mails for.  The woman I am certain was the one the Psychologist kept running out of the room to ask. She never showed up.  I saw her as she walked out of the building at 3:35 pm while I standing outside bewildered.

It was a meeting where I heard a lot of "I don't know" which for me translates to "I don't care enough to find out."  And in the real world - where people are held accountable - it doesn't work like that.  If you don't know about something someone is asking you about the correct is: I don't know but I'll find out.

But it's okay.  If they won't find out.  I will.

      

(I'll revise any mistakes later.  I'm getting worked up about this all over again.)