How NYC Schools Are Failing Our Children

image via istock.com

I’m not even going to mince words here. I don’t think the New York City Public School System is equipped to handle kids with autism.

Two weeks ago, 14-year-old Avonte Oquendo, ran out of his Queens school and has been missing since. Avonte is autistic and non-verbal. His school is a District 75 school and shares a space with a “typical” school. On the day that Avonte walked out of his school, a security guard asked Avonte where he was going. When he didn’t answer (because he’s non-verbal), the guard let Avonte go, assuming he was “one of the regular kids.”

Autism is an invisible disability and it’s easy for many autistic kids to pass for “regular.” But when there is a population of kids with autism in the same building as “typical” kids, there needs to be training and awareness. Everyone in the building needs to understand what autism is and what it ‘looks’ like. If the Department of Education is not prepared to do that, then maybe they should start creating public schools exclusively for kids with autism and/or special needs.

The school was also aware that Avonte was a runner and in need of “constant supervision.” There is surveillance video of Avonte walking through the school alone and running out of the building. It was also reported that the school waited an hour before notifying Avonte’s mother, Vanessa Fontaine, that her son was missing. When Dennis Walcott (Education Chancellor) was asked about how this could happen, his answer was evasive and Police Commissioner, Raymond Kelly, doesn’t believe the security guard did anything wrong. This should have never happened. Avonte should’ve never been left unattended and he shouldn’t have been able to run out of the school. The public school system failed Avonte and they need to be held accountable.

Read the rest of the article on Babble.com

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.    

Dear Mayor Bloomberg and Local 1181 (an open letter regarding the NYC School Bus Strike)

Dear Mayor Bloomberg and Local 1181,

Below is a picture of my son, Norrin. He will be seven years old tomorrow. He has autism and goes to a special education school in Westchester - 22 miles away from our apartment building in The Bronx. 

As my husband and I are both working parents - we rely on the Office of Pupil Transportation and the Local 1181 to get Norrin to and from school safely.

I am sure some wonder why we would choose to send our only child to a school so far way. It was not an easy decision to make. But not a single public school in The Bronx could meet Norrin's specific needs. It was a fight to get him placed into a specialized school but his school was well worth the fight.    

Yesterday, Friday, January 18, 2013, was the 3rd day of the NYC School Bus Strike. And my son Norrin is 1 of the 152,000 students stranded. On Wednesday and Thursday, I had no choice but to take vacation days from work to stay home with Norrin. But on the third day, I had to go into work. And with limited childcare options, I had no choice but to bring Norrin in with me. 

I am administrative assistant and my husband is a NYS Supreme Court Officer - we don't have the kind of jobs where we have the privilege of working from home on a whim. My husband, cannot even manage to take a single day off from work to pick Norrin up from school. So the responsibility rests on me. And while we have a car, I do not know how to drive. In order for me to get Norrin from school, I need to take a bus, MetroNorth and a cab - it's a 2 hour commute (one way). And I know parents are to be reimbursed for service but it's a $75 fare and I can't afford this on a daily basis.

Norrin isn't the kind of kid who can ride in a car pool with strangers. He still sits in a car seat. He has limited language and functions at a 4 year old level. Norrin's a runner and needs his hand to be held at all times. And while Norrin is okay riding trains - I do not feel comfortable sending him off with someone else - whether they know Norrin or not. When I commute with him, I keep both hands on Norrin while waiting on train platforms and when sitting on the train, I keep a hand on his knee because he tries to get up. If we're standing, I have to keep reminding him to hold on because he doesn't know how to keep his balance.     

So now I am forced to choose. Do I go to work? Or do I take my child to school?

I heard that out of the 145 students that attend Norrin's school only 43 kids showed up. These kids are missing out their much needed related services like Speech and Occupational Therapy. And because school is technically open - these  services will not be made up. They are missing out on classroom instruction and peer relationship building. Their routines are being disrupted. These are children at risk for regression. 

Norrin has come such a long way since his diagnosis, I cannot risk him regressing. And after disruptions to his routine, it takes weeks to get him back on track. So on Tuesday, I will need to take another vacation day so that Norrin can go to school.      

I have a generous amount of vacation time - four weeks. But if this strike goes beyond my vacation, I have no idea what I will do. I've already spoken to the Human Resources department and I've been told that this doesn't qualify for FMLA. And I need my vacation time to Norrin to appointments, for IEP meetings, for evaluations. This is beyond a stressful situation.  

So it seems ironic to me that Local 1181 members are fighting for their job protection, while so many parents - especially parents of special needs children - are worried about their own job security. My job is not secure - I can be let go at any given time. And while my bosses may be understanding, my being out of the office is an inconvenience. I worry about my job. Because I need it. And I have no union to fight for my protection.

This strike must end soon. Because the individuals who really need protection are our kids. And I am fighting for them.

Sincerely, 

Norrin's Mom

For more on the NYC School Bus Strike see my other posts: 
What Will I Do If There's a NYC School Bus Strike
Are You Prepared For a School Bus Strike? on Parents.com

MAKE YOUR VOICE HEARD - please sign the petition started by Miz Kp of Sailing Autistic Seas!  

What Will I Do If There's a NYC School Bus Strike?

I've been trying not to think about. What we would do if there really is a school bus strike?


We live in The Bronx. The Boy's school is up in Westchester County - twenty miles away. I don't know how to drive. (I just got scolded for the billionth time "this is exactly the reason why you should know how to drive Babe.") And I work down in Manhattan.


Bus drivers and matrons are scheduled to strike starting Wednesday.


You may be wondering how New York City is preparing for a possible school bus strike?  
   






The strike will impact "152,000 students and their families." And a significant amount of these students have special needs.


And it makes me laugh every time every time I hear that the DOE plans on handing out metro cards. "Parents of children in grades K-2 can request an additional MetroCard to escort their child to school." 


So...the DOE thinks it's okay to put a 3rd grader (an 8-9 year old) on the train or bus unescorted by their parent? I wasn't allowed to take the train/bus by myself until I started the 9th grade.  The irony of this is - if I left an 8 year old home alone and the DOE or any one else found out about it, I may have children's services knocking at my door.


Either way, a metro card isn't really going to help me. 


The DOE will also offer reimbursement to parents driving their kids to school or taking a car service - after filling out a form, of course.


Many kids in the public school system are working class families, single parents, parents of with multiple children, families who are working to simply get by. Families who do not have the flexibility in their jobs to take time off or work from home. Families who do not have cars or have the room in their budget to pay for car service (especially if the strike lasts for more than a few days). And let's be for real, it's the DOE - it could take months for reimbursement. 


The Boy's been on a school bus since he was two years old. It isn't easy putting your kid on a school bus, sending them off with strangers hoping they will keep them safe. Especially when you have a child with special needs and they don't have the capacity to tell you about their day to day events. The bus drivers and matrons are absolutely critical to families like mine and they deserved to be treated as such. But the Department of Education and The Office of Pupil Transportation are two different entities who I wished spent more time working together. Because there's too much red tape involved and our kids are all tangled up in it.     
So what will we do if there really is a strike? Here are the options -  


Option #1: I'll take a vacation days, stay home with The Boy and try to keep him busy. 


Option #2: Take vacation days and take him up to school via public transportation (car service is not an option for me can't afford it - especially if this lasts for a few days). Public transportation requires a bus, the metro north train and a cab from the station to the school. It will take about 2.5 hours. Going back home or even to work would be a waste of time and money because The Boy will still need to get home. I may need to just set myself up in the parents lounge... 


Option #3: Go to work, keep him home with a babysitter - I'll have to pay extra for that too. 


Either way, The Boy will be missing out on something and his entire routine will be disrupted.
The whole thing is sort of freaking me out. And I'm really hoping that all can be resolved between now and Wednesday.  

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.       

Resolutions, Anniversaries & Graduations

This week I cried many happy tears.

For the 2nd time this year, I had to file for an Impartial Hearing.  I filed the paperwork on my own and with no legal representation.  And on Tuesday The Husband and I met with a person from the school district for a resolution meeting.  

I know some folks will say we got what we wanted.  It's never been about getting what we want.  It's been getting what The Boy NEEDS.  

You know that saying "The squeaky wheel gets the oil"?  That's what I've heard ever since The Boy was diagnosed with autism and I had to advocate to make sure his needs were met.

I'm totally okay with being the squeaky wheel if it means, The Boy gets what he needs.  I mean, "Squeaky" was my high school nickname.  

And because I've been squeaking all year long, The Boy will be starting a new school in July.    It has been a huge weight lifted off of my shoulders.   And I am extremely grateful to the man who helped lift that weight.

The Husband and I celebrated our 9 year wedding anniversary on Wednesday.  I wanted to write a whole post about that...but it will have to wait.  We didn't exchange cards or gifts - I think we've both been preoccupied with all the crazy of this week.  

On Thursday The Husband attended an award ceremony at The Boy's school.  I couldn't go because I had to work.  But I was super proud that The Boy got an award in Technology.  I'm not surprised -  I mean, did you read yesterday's post?  But it was nice to see that his computer teacher recognized how hard he's worked this year.

This morning The Boy graduated kindergarten.  It's been such a long, difficult year.  For the both of us.  And it was difficult to sit through the graduation for many reasons.  And of course I cried.  Again, for many different reasons.  I'll post graduation pics next week.  

And now - I'm ready for the weekend.  I think we'll take a drive out to Connecticut - to the aquarium or the children's museum.  

What are your plans for the weekend?  

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.

   

"As a Parent"

Going into IEP meetings, I've noticed that some education professionals like to start sentences with, "As a parent..." blah blah blah blah.  Maybe it's their way of letting parents know that, they get it.

But every time I hear those three words, I realize that they don't get it all.  And I want to hold up my hand and ask "Are you a parent like me?"   

Because as a parent, I have had to put my child on a school bus before he could speak and while he was still in diapers.  

As a parent, I've wondered if my child will ever speak.

As a parent, I've stayed up nights worrying about what my child's life will be like when I'm gone.

As a parent, I've had to separate my child from his diagnosis.


As a parent, I have had strangers in and out of my home, helping my child learn the most basic tasks.

As a parent, I've had to rearrange my work schedule to accommodate all the strangers in and out of my home. 

As a parent, I've had to turn down invitations to birthday parties and gatherings because therapy always comes first. 

As a parent, I've had to turn down invitations to birthday parties and gatherings because I knew the invitation would be in a place my child could not handle.

As a parent, I've had to teach my child how to imagine, to play and pretend.

As a parent, I use the majority of my vacation days for doctors appointments and evaluations. 

As a parent, I cried, the first time my child said Mommy because I thought the words would never return.

As a parent, I marvel at every single accomplishment my child makes, because I know how hard my child had to work to achieve it.

As a parent, I wonder what his days are like because even though my child has speech, he cannot tell me what he had for lunch, what he did in school or about the best part of his day.

As a parent, I've learned to ignore strangers staring at my child.

As a parent, I've had to study special education laws and different teaching methodologies.

As a parent, I've had strangers, determine what is most appropriate for my child.

As a parent, I've had to fight for my child to get the appropriate services he needs.

As a parent, I've had to fight the people who start their sentences with "As a parent..."

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.)         

         
 

Just Another Manic Month

I can't believe it's the last Friday in February.  This month has been a whirlwind - a month of ups and downs.  Rejoices and rejections.  There's been so much going on that I haven't had the energy to write or read.  So this is my month in Fragments:

Back in November my mother's father, sister and brother were hospitalized.  My aunt was out within a few days - she's a feisty old broad, that one.  My grandfather (who is 89) was out after a few days too but he's not doing so great.  He needs insulin shots twice a day and my mother is the one that gives it to him.  She prepares his breakfast, lunch and dinner too.   As for my uncle, he just got out of the hospital. He's home and my mother checks in on him too.  (My mother, grandfather and uncle all live in the same building.) 

And then my mom takes the train from Queens up to The Bronx 4 days a week to pick up The Boy from the bus.  (I know, my mom is a saint!)  Anyway - my mom is tired.  And she won't say it but I know all of this is taking a toll on her.  And I was trying to think of an alternative solution for after school childcare that will still allow The Boy to get his ABA therapy.  I'm VERY happy to have found one.  I asked one of The Boy's past teacher assistants if he'd be willing to pick up The Boy 2 days a week.  Not only did he agree to do it BUT he's super excited about seeing The Boy again.

*

This month The Boy had two evaluations: psychological and speech.  Which meant he had to miss 2 days of school.  Which also meant me rearranging my work schedule for a few days.  Which meant I had to take 2 buses to get to the evaluation place.  Sit 2 hours through the evaluation.  Answer the same questions I've been asked for the last three years.  Then take a bus to the train station.  Take the train into the City.  Drop The Boy off at the company back up day care (a major perk that I LOVE!) and then run up 9 city blocks and 2 avenues to my office.  Work for a few hours, then run back the 9 blocks and 2 avenues down to pick up The Boy from the daycare.  And then...luckily both days, The Husband picked us up in the City.

*

Earlier this month, I was invited to this amazing lunch hosted by the Ladies Home Journal.  I was pretty honored to be there - I was in the room with real writers, women that I had been reading for last the year.  As a secretary, I'm used to being seen and not heard.  I'm used to sitting in on meetings taking minutes, but never would I dare offer my opinion.  Most of the time, I'm ignored; the higher ups just don't talk to the secretary.  It's just the way the corporate world works.  So to be at this table among these inspiring powerful group of women, mothers, special needs writers/advocates - was sort of intimidating.  But it was one of the best experiences I've had (as a blog writer) and that post is coming soon.

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Speaking of amazing experiences...I've been invited to write guest posts on a few websites.  And it feels really good, to get that kind of response to my writing - it's validating.  But wouldn't you know - I've had an incredibly case of writer's block.  And I have these great opportunities and I'm struggling.  I mean, if I write something crappy here...that's one thing.  I can revise or delete.  But to write something crappy for another blog  - one that gets way more traffic than mine?  There's no going back.  It's quite a bit of pressure...

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I stepped on the scale...as a result, I've been trying to exercise more.  That post is sitting in my drafts.   Have I lost any weight?  Nope - I've been losing & gaining the same damn 3 pounds.  But I have to get serious.                     

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This time last year, I had no idea where The Boy was going to go to school.  Then a school accepted him.  Then we started...and it's been a roller coaster ride ever since.  I probably shouldn't even be writing about it anymore but screw it.  A school shouldn't retaliate if the truth is being told.  Anyway - everyone is giving me the run around and I'm dizzy.  One day The Boy isn't appropriate, the next day he is.  And once again, I have no idea where The Boy is going to be placed in September. 

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And did I mention, I may be going to an Impartial Hearing in the next few weeks.  Did I mention, I'm going pro se (without an attorney).

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And before you go...please check out my Q & A with Unknown Mami :) 



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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.