Finding The Appropriate School When Your Kid Has Autism #T5Tue

It's TURNING 5 Tuesday - did you miss the first post? Catch up HERE. 

My search for the "appropriate" school placement began in the fall of 2010 - the same time I started this blog. The Boy was going to start kindergarten in September 2011 and I wanted to weigh all the options. I wanted time. 

If you have  child with special needs who will enter kindergarten in the fall of 2014 - NOW is the time to start the process. 

That's right - a whole year. Because it's a long process. So where do you start? I would suggest starting with schools. In New York City - there's a lot of school. Well, not a lot, but enough to keep you busy.

Because you'll need to tour. Gather paperwork (and possibly evidence). Apply. Wait. Cross your fingers, light a candle, say a prayer. And if your kid gets in...be prepared to prove to the Department of Education that it's the most appropriate.

Let me back up...because I can hear all the questions you're yelling at the computer. 

What schools should I tour?  

ALL of them. Seriously. If not all, then as many as you can. Public, private and even the ones you can't afford. Do your research. Ask questions. Browse school websites.

Where do I find special needs schools?

Believe it or not, there are a few ways to find schools that provide special needs services. I started with A Parent's Guide to Special Education in New York City - it really helped. I read through the book, took notes and did further research. 

Then, I attended a special needs school fair at the JCC in Manhattan. This year, it's being held on Thursday, October 24, 2013. You can register for the event - HERE. At the fair, I was able to schedule an appointment to tour, speak to school representatives and get applications. And it was a good way to weed out the schools I knew wouldn't work for The Boy. 

But the best way to find out about schools is to talk to other parents who've been there, done that. If you've never been to a support group - now would be the time to go. For Bronx parents - check out the Bronx Parents Autism Network. There's a meeting on October 8th. Don't be shy about asking parents where their children go to school. 

What about the local public school?

Visit your zone school, even if you know it's not appropriate for your child - just go to say that you did. Visit the DOE website. Make an appointment to tour local District 75 schools. And check out other special education programs like the ASD Nest Program or ASD Horizon program. Visit the NYC Resources page for more information - HERE.

What paperwork do I need? What do I include in the application? 

Most school applications require a recent evaluation (more on that next week) as well as past evaluations. Some applications will ask current teachers to fill out some sections. Applications can be 3 - 15 pages long (yes, I'm serious) and most have a fee (save your money) and a deadline of when to apply. Many schools will like the application before the Christmas break. 

I can feel your head spinning so I'll stop here. Remember the Turning 5 process is a lengthy process and I want to help. There will be more information regarding schools and the application process. So check back every Tuesday. 

And don't forget - there's a FREE Turning 5 Talk on 9/25 and 10/16 - click HERE for more details.    

Hope is on the Horizon (Part 2 - What I Hope For the South Bronx School That Failed My Child)

Ever since I wrote Hope is on the Horizon (Part 1) numerous parents going through the Turning 5 process have emailed asking me about the ASD Horizon program.   I was extremely cautious but candid with my words.  And I always let them know that I was simply giving them my opinion and I urged them to tour the school for themselves.

I still believe in the ASD Horizon program. But like so many other things in the world of special education - what is supposed to be and what actually happens are two totally different things.  

It is the South Bronx Public School that implemented the program, I no longer believe in.

I was hopeful about the school and the program when I wrote Part 1.  Even though, I was uncertain about whether or not The Boy could thrive in a typical public school - I wanted him to have a chance.  And I was hopeful in the teacher and I believed the administration would do the right thing if the program was not appropriate for The Boy. 

I want it to be very clear.  The ASD Horizon program did not fail The Boy. 

The Boy's teacher, failed.

The Assistant Principal and Principal, failed.

And the School District who put the ASD Horizon into practice, failed.

I was going to write a long post...detailing our year. But I won't. It's over. The Boy is out of that school and now he's in a better more appropriate place.

Instead, this post will list all the the things I hope the ASD Horizon program at that school becomes - because The Bronx needs this program.

I hope the teacher does not give up on a child on the first half day of school.

I hope they take the time to learn about autism. 

I hope the Assistant Principal does not dismiss parents concerns, telling them to "cálmate" (relax).

I hope the Assistant Princinpal and Principal are forthright when related services are not being provided and work with the parent to ensure their child gets his/her services.

I hope they don't bully the parents within that first month of school, hoping the parent will pull the child out of the school.

I hope they do not make excuses about what they can't do because of budget cuts - that's not an acceptable answer.

I hope the teacher communicates with the parents using a communication notebook. And I hope that if the parent writes to the teacher with a significant concern - her question is answered.

I hope that the Assistant Principal doesn't encourage the teacher to cut off communication with parents.

I hope that in a kindergarten class of six children, every child gets the opportunity to be a Student of the Month.

I hope they will be honest with parents and try to work with them and not against them.

I hope the teacher remains professional and does retaliate against the child.

I hope that if they encounter another parent blogger, they don't print out past blog posts and place them in the child's file. And I hope the Assistant Principal doesn't use blog posts as ammunition to insult the parent.    

I hope that if the teacher is absent for weeks at a time, they will place an appropriate substitute special education teacher in the class.

I hope they really work with New England Center for Children consultants - I hope they value their suggestions and implement them in the classroom.  

I hope they realize that special needs parents are experts when it comes to their kids. I hope they listen to parents and learn to partner with them.

I hope they don't promote a child to the next grade, even though the child failed every single subject, because they want to keep the child in the district rather than suggest a more appropriate placement.

But most of all, I hope that they all remember the reason why they got into education in the first place.       

I Need This Right Now

When All Else Fails...I Say a Little Prayer

The Big Bad Annual Meeting [cue scary music]

It's that time of year for the annual meeting.  Our meeting is Friday.  And there is a lot at stake.        

I know, I've said it before.  But I'm learning that with every meeting - there is always going to be something on the line.  Last year, I thought the Turning 5 meeting was The Big One.  (That meeting was pretty hilarious.  I can laugh about it...now.) 

But this one that's coming up?  This is the big one.  The one that could make us or break us.

I am the kind of person who believes that people will do the right thing - especially when children are involved. 

I want to believe that the powers that be, will do the right thing by The Boy.

We will see.

   

The Boy as Student of the Month (Sike!)

Sike: a slang term (correctly, "psych") that was big in the 1990s. It's similar in usage to adding "not" to the end of a statement that's meant to be either sarcastic, a joke, or both.

On Friday I came home from work and opened The Boy's book bag.  In it, was a dog tag like chain "Student of the Month."

I stared at it for a while - amazed.  Proud.  And even a little hopeful.  It was the perfect Mother's Day gift. 

There are only 7 kids in The Boy's kindergarten class.  (Even though, it's supposed to be a 6:1:2).  May is the 8th month of the school year.  And yet, The Boy has never been student of the month.  

Is it me?  Or does that seem messed up?

So when I saw the Student of the Month dog tag, I was all like - it's about damn time!

I asked The Boy about it.  He said it was a "student of the month ring."  I gave him a big kiss and a hug. 

Every day I tell The Boy that he's a smart kid and that he knows his stuff.  I was happy that his teacher was finally looking beyond the behaviors and diagnosis and seeing him for the bright kid he is. 

Because in spite of everything, The Boy has come such a long way this year.  He's talking so much, reads above age level and has been asking questions and wanting to make the social connection.

A few weeks ago, we had a play date with the little girl in his class.  And ever since that day, he's asking about her.  Asking if she'll come to his room and play.  And The Boy's been asking for other kids in his class to come over.  He's never done that before.       

And then yesterday, The Husband broke the news in the dairy section (he met me at the supermarket).  He said he listened to the messages.  The Boy's bus driver called - apparently, the student of the month chain belonged to another kid on the bus.  He dropped it and The Boy picked it up.  The bus driver asked if we could return it on Monday to the real Student of the Month.  

I'll be honest, the news put a serious damper on my Mother's Day.  I went home and sulked on the sofa.  Again, wondering - there are 7 kids in the class, May is the 8th month of the school year and still The Boy has not been student of the month.  I mean, it's kindergarten.  And there are only 7 freaking kids.  Shouldn't everyone get a turn? 

A few people tried to console me by saying - It's okay, The Boy doesn't know the difference.  

But what if he does?

I read Carly's Voice - the book about the non verbal autistic girl who started communicating by typing. When she started typing as communication - her family realized that Carly had understood everything that had been happening.  

What if that's the same with The Boy?

It's hard to know just how much The Boy knows.  But I do know he's a lot smarter than the folks at his school give him credit for.

And in writing this I realize, that The Boy doesn't need a chain as recognition of his progress.  I see it everyday.  And we celebrate it.     

I Cannot Lose Him

I remember The Boy clapping his hands on his first birthday.  


And I remember at that time, he had two words:  Mama and Oh Boy.  (Okay, that's three.)


By The Boy's second birthday, he couldn't clap anymore.  


Or point a finger.


Or look me in the eye.  


Or utter a word.  The three words he had.  He lost.  


Somewhere between that first year and second year, I lost him.  It's called Regression.


And we needed an ABA therapist in our home, 15 hours a week, to teach The Boy how to clap.  Point.  Wave.  


And we needed a Speech Pathologist to help The Boy to say Mama.


The Boy's come such a long long way.  He works so hard. 


Does he still have behaviors?  Yes.  


Will he always look me in the eye?  Nope.  


But he's an amazing kid.  Super smart.  Charismatic.  And funny.  


Not everyone sees what I see.  Not everyone believes, the way I believe.


I realized that this morning, when I toured a District 75 school that someone from the district recommended.  This person, has had limited interactions with The Boy.  I'm going to go out on a limb and say that this person has possibly skimmed The Boy's IEP.  I've given up the belief that anyone from the districts reads the entire IEP.


You may be asking - why I'm touring schools.  Well, after months of going back and forth with the principals, the teacher, the district - they've finally come clean.  The Boy is no longer appropriate for the school program that is so appropriate on paper.


And they are ready to toss him into the first District 75 school with an opening.  


But the people that really know The Boy?  The people that have worked with and truly care for The Boy know that District 75 is not the appropriate placement.  


And the other day, I came across this blog post written by a special needs attorney.  In the post, he writes, "...of the 15,000 children turning 5 who were recently referred to District 75, only 1,000 actually belonged there."  And where did the attorney get that idea from?  Gary Hecht, the superintendent of District 75.   (D'OH!)


Granted that post, was written two years ago.  But like I said.  I toured a District 75 school today.  And I'm going to say it again - THE BOY DOES NOT BELONG THERE!


Quite honestly, what I saw today was quite upsetting.  


I saw a boy strapped in a wooden "wheelchair" being pulled backwards, like he was luggage.      He was missing a shoe and sock. 


I heard paras yelling at children.   


And the man who gave me the tour talked in great detail about "taking down a child."  He also referred to a classroom as a "last stop" before institutionalization.  That classroom, was  third grade room.


I saw an OT/PT room filled with equipment that looked as if it hadn't been moved in months.  


And I saw children in wheelchairs getting their OT/PT services in the hallway because the OT/PT room was in the basement.  And there was no way for the children in wheelchairs to get down to there.


I saw the autistic classrooms, doing "touch your head" and "point to the letter ---."  And that's perfectly fine, if that's what a child needs.  


But that's not what The Boy needs.  


And I didn't see a single child in that school like The Boy.


If placed in that school, The Boy would never have a peer. The Boy would never be challenged.   The Boy will be set back three years.  The Boy will most likely regress.    


And I cannot lose him again.  
                 

What The NYC Public School Special Education System Really Needs

Pardon the shameful social media self promotion. 
I'm on Pinterest.  Look for me - LaliQuin (same as my twitter name) Add me.  Repin me.  
And if you're not on Pinterest yet?  Why not?  Go ahead, sign up...yeah, it's a wee bit confusing (at least it is for me)  But let's figure it out together.  Because you've got to be in it to PIN IT. 

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 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.

Tips for Turning 5: Where to Begin

School may have just started but if your child has an IEP, Turning 5 and entering kindergarten next Fall - you may want need to start doing your homework now.

No.  It's not too soon to start touring schools and applying.  Trust me.  Anyway, last year was pretty tough for me and I thought I'd share some of the things that were helpful to me.
  
1.  Give yourself plenty of time. The transition from CPSE to CSE is truly a year long process.  One with many deadlines - know them all - and appointments.  You will need to tour schools, fill out applications, have your child interviewed at schools, possibly make an appointment(s) for a private evaluation, meet with the CPSE and the list goes on and on.     

2.  Schedule enough time to get a private evaluation. By the time you go into your Turning 5 meeting, you'll want to be armed with a private evaluation with recommendations.  Start calling around in September - as there may be wait lists.    

3.  Attend the JCC Special Needs school fair on Tuesday, October 25th.  "The JCC in Manhattan and YAI/NYL/LIFESTART partner to present the annual Special Needs School Fair. Representatives from preschools, elementary, middle, and high schools serving the New York City special needs community will be onsite to provide information and answers to your questions. School materials will be available."  For registration information click here and go the the JCC Manhattan website.

I attended this last year.  Get there early.  Go with a pen, notepad, a bottle of water and some Advil.  It's overwhelming. But almost every single school within the 5 boroughs, Westerchester and Long Island are there.  If you're a working mom or just limited with time to schedule appointments, the school fair is a great way meet representatives, pick up applications and set up appointments to tour. 

4. Make a list/spreadsheet of all the schools you want to tour and/or apply to.  But tour a school before you apply.  Sometimes you'll know just by walking into a building whether or not it's the proper placement for your child.  Many schools will tell you - the earlier (by December is ideal) they recieve the applications the better.  Many schools have application fees, which can become a financial hardship when applying to several schools.  Ask if the fee can be waived or reduced.      

5.  Be honest with yourself.  I cannot stress this enough.  As parents, it's natural to want to believe your child is the rock star of the class.  However, when touring schools - look at the children, listen to the them, watch with a keen eye.  Then ask yourself the tough questions.  Does my child fit in here?  Would my child have a hard time?  Can my child do the work? Will my child need a para to get through the day?


Your feelings will be hurt.  You will feel frustrated.  You will be disappointed.  Your child will be rejected.  You will wonder - why wasn't my child good enough for the _______ School?  Your child will be accepted.  


In the end - it really will work out.  And if it doesn't, that's okay too.  Don't be too hard on yourself.  It just means, you'll have a second chance to get it right. 

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.            

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.       

Stepping Up. Melting Down.

I will never forget walking into the Harry H. Gordon (HHG) school for the first time - it was mid June, 2008.  I had no idea what to expect of a special needs program.  We had just received the diagnosis three weeks before touring HHG. 

The Boy on his first day of school

At the time we toured the school, The Boy had no language, he couldn't point a finger.  By that September he had 5: hi, bye, no, baby, go.  He could also say letter A - E.  And he could sign: give me, more, finish and play.  I remember putting him on the short yellow bus for the first time that September.  So scared.  So uncertain.  Still doubting the reality of the diagnosis.  I remember The Husband saying, "It's just to help him catch up.  He'll be in a regular school by kindergarten."     

It's three years later.  And now it's time for him to move on.  He has more than 5 words - hundreds, maybe thousands.  He knows all of his letters.  He doesn't need to sign anymore.  While his speech is not always spontaneous, he can get his needs met.  But he's still not ready for "regular" kindergarten.  It's okay, we've kind of let go of that.   

Last Friday was his "Stepping Up" Ceremony.  The program said the kids would sing two songs: Sesame Street's "Sing" and Laurie Berkner's "The Story of my Feelings."  Before leaving the house, I stuffed tissues in my bag, thinking I would cry. But there was no time for tears. I watched as The Boy refused to come into the auditorium and had to be coaxed in by his teacher.  As I walked back to my seat on the other side of the auditorium, I could hear him crying as his classmates sang.

After a good 5 minutes of listening to The Boy cry, I got up and walked around to where he was. He was sitting in his teacher's lap, fingers in each ear and tears streaming down his face. There are moments when it's very easy to forget about The Boy's diagnosis. This was not one of the moments.  In that moment, the diagnosis was painfully obvious. And instead of celebrating and enjoying the moment, all I wanted was to get the ceremony over with and get him out of there.

For the millionth time, I questioned my decision for September.  Could The Boy handle being in a typical school?  Even if it is a special class for kids on the spectrum?  If a Stepping Up ceremony could trigger a serious melt down - what will he be like during an assembly?  What will the first day of school be like?

I wore a pretty dress.  The Husband was dressed up.  So was The Boy.  My parents also attended.  I wanted to take a nice family picture.  But by the time the ceremony ended, I was mentally exhausted and my stomach in knots, thinking about September.  We rushed through a few pictures.  Because even though The Boy stopped crying, he was not in the best of moods.  And when he says "it's time to go," I know it's time to go.

We decided to go out for an early dinner and as soon as The Husband started driving, The Boy began to sing "The Story of my Feelings."  It's a good feeling, hearing your child sing.  It's something he's been doing a lot lately.  Singing to himself, hitting all the notes.  The ceremony wasn't what I had expected it to be, but in its own way, it ended exactly the way I wanted it to. 

The Boy's time at HHG isn't over just yet.  There's still the summer program.  Thank goodness. 

                          

 

         

Autism Moms: A Camaraderie of Soldiers

Yesterday I took The Boy to his last "official" session of sensory gym for the school year.  There's a male therapist there who jokingly refers to the waiting room as "The Women's Group."  Because the mothers in the room talk, gossip, complain (usually about The Board of Ed), exchange advice, laugh and sometimes we cry. In the last year, I had become close to two mothers in particular.  Every week, they were there to listen to our Turning 5 saga, to lend support, to listen.  And it was comforting having these conversations without having to stop to explain a term or an acronym.  These moms - got it.

Anyway - yesterday I had to say goodbye to Liz and her daughter, Izzy.  Izzy was moving on to another school and would no longer require the services of the sensory gym.  Her new school had an OT and sensory gym on site.  Every week, upon seeing me Izzy would walk up to me and ask to touch my earrings.  Yesterday, I made sure to wear my favorite pair - I knew it would make her happy.  At the end of Izzy's session, I hugged Liz goodbye and wished Izzy luck on her first day of school.  I told Liz I'd miss her and that I'd keep in touch.  Maybe we'll meet for coffee, I said, I want to hear about Izzy's first week at her new school.  

Yesterday also got me thinking about the two other mothers (Judy and Caroline) that I'd gotten close to this year.  The mothers who toured and applied to the same schools I did.  Judy's son attends the same school as The Boy.  The started out in the same EI class.  And Caroline, I met at one of the tours.  During the tours, I'd run into the same parents, their faces may have been different but the expressions always the same: worried, concerned, stressed out, tired, anxious, frustrated and still just the slightest bit hopeful.  I remembered Caroline because she looked like someone I knew.  We exchanged emails during one of the tours and since then every few weeks or so, we'll exchange an email.  It was the same with Judy.  We'd text or email to "check in."

And even this blog site and my facebook fan page.  The support and words of advice that I've received from other moms, moms going through the Turning 5 process and the Turning 5 veteran moms.     

I needed that extra support. I'm grateful for it.  It was a comfort to know that other mothers were feeling all the things that I was feeling.  That I am not alone.

Recently I came across an article entitled "Autism Moms Have Stress Similar to Combat Soldiers" and it's true.  And similar to the stress of soldiers, autism mothers also share a soldier's sense of camarderie.  I think our bond is different than a typical friendship. Aside from being mothers, autism links us together.  And as much as we may value our indivual friendships (outside of the autism community), our bond is necessary.  Our "women's group" is vital to our sanity.  Because unless you've been through through the trenches of autism, battling the Board of Education, you have no idea what it's like to stomp in our combat boots.

So thanks to every mom that helped me get through this last year.

Just as soliders have a creed, so should we.  This is my adaption -

I feel like the Private Benjamin of Autism Moms - a frivilous woman walking into a committment on a whim and discovered, it's much harder than she ever imagined.  But in the end - Private Benjamin kicks butt! 

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.)