The First Day of School and Goals for a New School Year

"Do I have school today?" The Boy asked as soon as his eyes opened. It's the same question he's asked every single day for the last 4 weeks. 

"Oh yes you do!" I may have said this with much more enthusiasm than necessary.  

The Boy didn't cry or protest. I prompted him through his morning routine. When I asked him to put on his socks and shoes he did so independently. Okay, he put on one sock and one shoe. But he did it on his own.

And when the bus came, he stepped right on without looking back and took the first free seat. 

It's the 5th of his short life being put on a bus to school. His 2nd year at this school. If The Boy were a 'typical' kid he'd be heading to 2nd grade. Instead, he'll go back to the same classroom with 5 of his peers, a teacher and 2 assistants. It's comforting to know he'll be with the same teacher and most of the same students (their ages ranging from 6-8 years old). 

And because of The Boy's 'severe cognitive disability', he cannot participate in the standardized assessment. Which means, no additional pressure. (I hated standardized tests and assessments as a kid.) Some of The Boy's goals for the year include:

• verbal social interactions with peers
• following a variety of 2 step commands containing basic and linguistic concepts
• comprehension and responding to WH questions 
• reading a passage and answering multiple choice and short answer questions
• listening to the teacher read a story and answering 5 WH questions
• attending to a task without distraction for 5 minutes 
• decrease self-stimulatory behaviors
• display appropriate coping skills to deal with changes or disappointment 
• writing sentences using proper sentence structure and grammer
• solving 2 digit addition and subtraction problems with regrouping and;
• engaging in cooperative play skills.

It may not have been the place I imagined he'd be, but it's the right place for him. And I'm grateful that after two long years of searching, such a school exists. They understand him. They care about him. They know how to teach him. The Boy's learning and he's happy. That's the most important thing.

What goals are your kids working on this year? 

First days pics from years past

He Basically Failed Kindergarten & I'm Okay With It

Today was the the last day of school for New York City Public School kids.  It's also the day  parents start bragging on Facebook about their kids grades. 


Don't get me wrong, I'm not hating on those parents.  I'm the first one to brag about my kid when he does something amazing.  It's just that based on his report card, I have nothing to brag about.  Because The Boy pretty much failed kindergarten and if he were a 'typical' kid - he could have gotten left back.  


When I was a kid there were letter grades, now kids are graded by numbers: 


4 - Exceeds grade-level standards
3 - Meets grade-level standards
2 - Approaches grade-level standards
1 - Far below grade-level standards


And even though it's supposed to be a special education class for children with autism, The Boy got a 1 in almost every single subject.  It was no surprise to me that he got a 3 in Reading.  But everything else?  A big fat 1.   

For the most part, I don't care.  Because I have an understanding of The Boy's autism.  I know that the way the material was being taught was both inappropriate and difficult for him.  


I also understand that grades - in the grand scheme of things - don't matter.  Because I know a grade will not determine how much The Boy actually knows.  And I know goals are what really matter.  And he's met a lot of personal goals this year.  


Which is why I don't understand why The Boy got a 1 in Personal and Social Growth?  (Okay, maybe this grade bothers me a little bit.)


This year, The Boy had a friend from school over.  They played all afternoon and since then he's been asking for her and his other classmates.


This year, The Boy asked "Hey where's Dad?" when he realized he wasn't home yet.


This year, The Boy has made gains in potty training and self help skills like dressing and grooming.  


This year, The Boy's spontaneous speech has made me stop dead in my tracks. 


This year, The Boy learned how to count to 100.  


This year, The Boy started typing on the iPad - searching for things he wanted to watch.  


This year, The Boy's handwriting improved.


This year, The Boy drew a picture (rather than writing what he was asked to draw).


This year, The Boy raised his hand in class when he wanted to speak.


This year, The Boy sat in a crowded cafeteria and managed to eat his lunch.


This year, The Boy succeeded in an environment where he was set up to fail.


This year, in spite of all his challenges at school he has toughed it out.  And he's made progress.  Maybe it's not up to the teacher's standards but The Boy continues to surpass mine.  


Because I know the amount of work he puts in.


Because I know the effort he makes.  


Because I see how hard he tries.


And it's a shame that The Boy's teacher couldn't see the same.     




  

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.

    

Walking Up The Down Escalator

Summer 2011

Last night while doing homework with The Boy, I watched as he struggled coloring within the lines. Writing his name.  Tracing the letters.  His hand shook as he gripped the crayon.  The crayon that I broke in half to help with his grip.  (note to self: DO NOT break crayons in front of The Boy. It leads to 5 minutes of "We have to fix it.  We need scotch tape.") The Boy needed a bit of redirection and every so often I needed to put my hand over his.



Fall 2011



I stare at the scrawl of his six letter name and I'm glad he doesn't have to write out his last. As much as The Boy loves spelling and letters and building words with his blocks - writing is an exhausting task.  It's not laziness, it's hard.  Physically and mentally exhausting.  It requires hand strength he doesn't quite have. Motor planning and concentration.

For me it requires a lot of redirection.  And even more patience. 

Why does The Boy have difficulty concentrating to write his own name, but has the patience to spell out If you give a moose a muffin?  It's a question, I know he cannot answer.  At least not now. 

There was a time when The Boy couldn't point his finger. 
There was a time when The Boy couldn't jump.
There was a time when The Boy couldn't speak.

The Boy does all of these things now.  So I have to remind myself not to worry too much about his handwriting or the coloring within the lines.    

When I got off the D train at Columbus Circle this morning, I glanced over at the escalators.
The up escalator was too crowded, The down escalator, empty.  I was almost tempted to run up the down escalator, instead I ran up the subway steps.   

I don't know why, but at that moment I thought of The Boy and his learning process.  Some children can just get by as easily as standing on the escalator.  Others, have to work at it by running up the stairs.  Learning for The Boy, is like walking up the down escalator.  It's difficult, there are moments when you feel like you're just never moving forward. Getting to the top will take much longer, but it can be done. 

The Boy never stops moving.  Eventually he'll make it to the top.  And every day he's one step closer to getting there.        

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... 

 

        

  

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!   

Wordless Wednesday: Progress!

Norrin writing his name (by himself!) and doing pre-k math :)  
Thank to his new amazing SEIT - Ms. N  

Manic Weekday Mornings

Five mornings out of seven the alarm goes off at 5:30 am.  I am often tempted to hit snooze, however, my alarm clock is strategically placed in the bathroom.  Getting up out of bed and walking down the hall to the bathroom to hit snooze for another five minutes of sleep doesn't seem worth it.   

Once I'm up. I'm up.  And I have one hour to take a shower, get dressed, apply my mask of makeup, make lunch, make breakfast, make coffee and wash last night's dishes. I have to make The Boy's bed (because at some point in the middle of the night, he has wandered into our bed but that's for a whole other post.) and pick up his toys and books.  I get The Boy's clothes and take them into the living room where I will help him get dressed.  I pour out a bowl of cereal - sans milk.  I drink my coffee while watching the local news and I try to figure out what to wear for myself.  Though my own outfit, takes much less thought than The Boy's. 

By 6:28 I'm back in my room, ready to wake The Boy.  Some days he's ready to go at 6 am, other days I have to grab him by the ankles and pull him out of bed.  Often bribes of cereal bars or muffins are involved.  Not today.  I tickle him awake.  His pull-up is heavy and ready to burst.  (Yes, he's 5 and sleeps in a pull-up.  Again, that's for another post.)

I drag him out of our bed and walk him into the bathroom. His eyes are half closed, his bare flat feet slapping the wood floor.  I pull down his pajama pants, yank off his shirt and pull off his pull-up.

"Pee pee in the potty?" I ask.

"No way," he says.  The Boy isn't a morning person.

"Norrin. Fix it." I say.  We say 'fix it' when he needs to fix his tone of voice or when he's being disrespectful.

"No I do not wish to do pee pee in the potty," he says.

This response kind of makes me giggle. 'I do not wish...' is his latest phrase thanks to The Cat in the Hat. 

I wash his hands and face.  "Now it's time to brush teeth," I announce. And this is the hardest part of our morning routine.  The Boy hates brushing his teeth. "No! No! No!" He screams and starts to make a run for it.  But I grab him.  Now this next part is always a little dramatic.  I stand him on the step stool in front of the sink. I stand behind him, the weight of my body pinning him against the sink.  I bend slightly, wrapping my left arm around his body and with the toothbrush in my right hand, I press my elbow against his chest, holding him down to brush his teeth.  I pry his mouth open with the toothbrush and my index finger.  This is tricky business.  The Boy has been known to bite.  

By now it's 6:50 and I still need to get him dressed and hope he eats some cereal before heading out.  I get him dressed while we watch Good Day New York.      

I realize the dressing and tooth brushing are opportunities for The Boy to work on his self-help IEP goals.  But who has that kind of time when bus pick up is at 7:19?  That has to wait for the weekend when there's more time.

The Boy sits at the table and picks the pink cheerios out of the bowl - he'll eat those first before the plain cheerios.  I rush around, doing the last minute thing: spritzing perfume, lotion on hands, grab the cell phone, check the book bag. It's 7:07 by now and we have to go.  

The Boy is no longer at the table but in the bathroom - standing on the step stool, brushing his teeth.  Well, more like eating the toothpaste.  "Good job Norrin!" And I pull out of the bathroom because now we really have to go. I realize that he doesn't exactly hate brushing his teeth, he hates me brushing his teeth.       

Hats. Scarves. Coats. Bags.  We are out the door.  I see the bus already in front of our building and I tell The Boy to run.  I hate making them wait. 

I kiss The Boy goodbye and prompt him to say good morning to the driver and matron. 

"I'm so sorry. Am I late or are you early?" I ask the driver. 

"Actually we're right on time," she says.

And that seems to sum up our manic weekday mornings.  Never too early. Never too late.  Always right on time, with some seconds to spare.