Thursday, October 9, 2014

IEP Hell: The Neverending Headache

If you have been following along with the saga of my middle son's IEP's, you will know that we have had our ups and downs.  Mostly, luckily, thankfully, our experience with these meetings has been positive.  Until last year, with the start of his transition to high school, we never really had any kind of problem that we could not solve.

I am feeling that those days are behind us.  Even after a somewhat positive resolution to our last meeting before this school year started link here , we find ourselves baffled by school officials' lack of understanding of what inclusion looks like.

For instance, it does not look like a modified gym class for kids who are recovering from injuries.  Seriously, it does not.  

Charles is not injured.  Down syndrome is NOT a reason to be left out of a typical gym class.  In fact, Charles has ALWAYS been included in a typical gym class...until this year.  They decided (unbeknownst to me) that it would be better (their word was safer) to put Charles in a class where three or four other kids were getting therapy for injuries, rather than with the "general population". I am using that term with no irony whatsoever.

The gym teacher, who, all in all, seems like a very nice person who is trying to get a handle on how to include and teach Charles, is completely overwhelmed by this task.  I am not exactly sure why, but lack of understanding about what Down syndrome is and isn't seems to be a big piece of it.

I really didn't know what to say in the moment, because to me, it seems like a no-brainer that you would just assume he can do stuff until you see that he can't and then modify from there.  In the case of gym, the only modifications Charles needs are the ones that address his AAI What? and those are minor.  He can run, shoot hoops, play games, do bench press...pretty much everything that gym entails.  Can we just for a second assume that he can do stuff before we decide (with no evidence other than ***whispering*** psst, he has Down syndrome ) that he can't?

The problem "they" say is that Charles once left the gym without permission and they are worried that it would be hard to watch him in a large group setting, such as a regular gym class.  I get the need for safety, but let's break it down a bit.  He left this gym class/therapy and went to the next class on his schedule; most likely because he was TOTALLY BORED!  Who wants to sit around watching other people get therapy?  Further, they decided this BEFORE he started school! They had it in their heads that he could not handle the larger class and put him in this poor excuse for a gym class instead, without consulting me (I would have laughed at them) or even trying out the regular class first.  


So, I told them that we needed to get him into a regular class, like YESTERDAY and they brought out the standard, tired argument of who was going to "watch" him, since, you know, they are so understaffed and the district won't give them another aide and yada, yada, yada...

I'm sorry, what?  

I pay taxes and ridiculous school fees for this "free" education and my kid will get what he needs; and if you put him in a class that actually has activities to keep him engaged, I am pretty sure that he won't feel the need to wander off to the math lab for some excitement.  Besides, my kid is LEGALLY entitled to receive a free, public education in the least restrictive environment; in this case, the high school that his brothers also attend, five blocks from our house.  This is not special treatment.  It is legally protected and socially just inclusion.

His case manager actually started complaining that there were so many kids "like mine" coming down the pike that they didn't know how they were going to handle it. And I said (trying to restrain myself from rolling my eyeballs out of my head) "Yes, you had better believe they are all coming!"  The insinuation was that "we" were the problem.  We.  Us pesky parents and our stupid kids.  

Are you freaking kidding me?!?!  These creative, bright individuals can't think of a way to revamp the system to accommodate children AT THEIR HOME SCHOOLS IN REGULAR CLASSES?!?!?  How about take 75% of the teachers and aides in the segregated classes and put them in the others?  Co-teaching?  Extra hands?  Spending less money busing kids to other schools also means more money for extra teachers.  For the other 25%, we can have some smaller classes for those kids that really, really need it and even those could go away in time, in my opinion.  We are finding out that our kids learn better together.  ALL our kids learn better together; no matter where they are on the continuum. Read Thisthis, and this.  

I am SO TIRED of having to educate the educators.  I am tired of getting beaten down to the point where I feel like my only choices are to pull him out altogether or leave him to rot in "life skills".

I have more to say, but right now, I am just so freaking tired.

Thursday, September 4, 2014

"Are You Here?" Movie Review ***Spoilers and Yelling...Lots of Yelling***

On a rainy day, like today, one of my favorite things to do is watch a movie. 
My kids are in school, I have nowhere to be in particular today, so it was just me and OnDemand.

I had come across the title "Are You Here?" a few times recently and I thought it sounded promising.  I mean, Zach Galifianakis and Amy Poehler?  What could be bad about this movie?!?!?

As it turns out, virtually everything.  

Now, I am no movie writing genius, but I would think when you cast a couple of 
the funniest people in Hollywood today you would have them be, oh, I don't 
know...funny?  No!  You say?  That is too obvious?  Instead, lets portray them
as a severely depressed, borderline sociopath (Galifianakis) and an uncaring, selfish bitch (Poehler) and Voila! You have this horrendous piece of crap that I ruined a perfectly good rainy day (and wasted $7.99.  Thanks, bloodsucking BigCable!) watching.

Wait, it's a DRAMEDY, therefore, it doesn't need to be funny or serious, apparently, just really, really, horrifyingly awful.

You know when you get to the end of a movie and you are like "No.  NONONONONO, there is NO WAY that that is the ending.  NO!!!  WHAT DID I JUST WATCH?!?!?!???  HOW IS THAT AN ENDING???!!!???  IS THIS REALLY HOW I JUST SPENT TWO HOURS OF MY LIFE?!?!?!? AAAHHHHH!!!!!!!!"

What does it all mean?  Only Amish people really get it?  Everything else is plastic horses?  WHATDIDIJUSTWATCH?

Here is the link if you don't believe me.  Just don't ever say I didn't try and spare you.

Zach and Amy, for the love of all that I hold dear, PLEASE, PLEASE don't ever make me hate you in a movie again.  Amen.

Sunday, August 31, 2014


It's a long weekend.  I love it when Sunday doesn't mean the weekend is coming to an end, it's only the middle.  Soak it up!  Do! Stuff!  I know what I will do (I think to myself), I will make delicious, cool looking pancakes that my whole family will adore so much, they will beg me to make them all the time and they will become the stuff of family legend.  They will be crying over my coffin thinking about how freaking ridiculously awesome these pancakes were.

(Don't they look great?!?  Not sure about the gummy worms, though, weird.)

I mentally pat myself on the back for being such a great mom as I stroll the market looking for the correct ingredients.  They don't carry an apple corer?  Oh well, I matter.  I will just core these lovely Granny Smith apples by hand.  It should only take, what...30 minutes? (the real answer is:  infinity)

Two hours later, I have given up trying to make apple rings.  After nearly losing two fingers and ruining four apples, I have settled for making a small batch of apple rings and then, I will use the rest of the batter for apple pancakes...just dicing up the leftover apple and adding it to the batter.  

Not quite what I had in mind, but 120 minutes in, there is no way I am not making something on the griddle.

Oh crap.  The griddle is still on top of the fridge and needs to be cleaned.

After scrubbing the crap out of the non-stick (note:  foreshadowing) griddle, I finally start working on the batter.

I read the instructions on the side of the bag of gluten free pancake mix.  "How many eggs do I need?!?!? 5?!?!????!!!  What the hell, Pamela?!?!  Okay, I will use applesauce to make up the difference.  WHAT?!?!?!!!  How are we out of applesauce???!!???Okay, it's still fine, I will improvise.  Two eggs + Two tablespoons of Earth Balance + One cup of Almond Milk+ Whatever oil we have left = Five eggs, right?  Whatever."

The batter is finally prepared and the griddle is hot.  I place the apple rings on the griddle and begin to gently drizzle batter over them.

"What in the world?!?!?  There is no way to leave the middle circle open.  NO WAY.  Okay, that's fine.  They will be circles, not rings, but no less delicious or beautiful."

I am now sweating in my 100 degree kitchen and have gone partially deaf from the sound of the overhead exhaust fan as it labors fruitlessly to waft the smell of burnt batter away from the stove.

Brett comes in and asks if I can drive him to a friend's house.  I ask him very sweetly to wait until I am done making him THESE! DELICIOUS! PANCAKES! and turkey bacon and he backs slowly out of the room.  Smart child.

It as at about this moment that I try and turn the rings (now circles) over.  

If an appliance could laugh, this electric griddle would have.  Huge, loud, Teflon coated guffaws.  "Oh, you want to flip these pancakes?  These, right here?  No way in hell, lady.  Ha ha ha ha ha haaa."

Apple Ring Pancakes:  Nailed it!

I take a few belly breaths and count to five.  It is either that, or start dismantling the kitchen board by board.

I look over at the sad remains of the apple ring pancakes and decide to give in and just make pancakes with apple bits.  They are sure to be delicious, still, right?

I dollop the apple batter onto the comal (with about a half container of Earth Balance to ensure non-stickedness) and let go of the breath I have been holding in for the last two hours.

Danny comes in and takes one look at the griddle and almost starts laughing until he sees the flames shoot from my eyeballs.  Instead, he starts scraping the crap off of it, wondering out loud if the apples are still salvageable.

I start laughing...that maniacal laugh that you know is just one step below tears while wielding the spatula like a knife.

He backs away, nibbling on half burnt/half raw pancake batter and apple, swearing it is delicious.  This is an example of why we are still married.

In the end, I do manage to pull off some surprisingly good apple pancakes and turkey bacon, which only Brett and Danny wound up eating.  The other two rolled their eyes at me and reminded me why I never try and make breakfast in the first place.

Amy's Apple Pancakes

Prep Time:  Three hours

Crying Time:  Three hours (on and off)

Time Husband Spends Trying To Hold In Laughter:  Your entire marriage

Eating Time:  Three minutes

Cleaning Up Afterwards:  Ninety minutes

Yield:  12 Somewhat edible, very greasy pancakes

Thursday, July 3, 2014


I love the summer.  It is, by far, my favorite time of year.  Everything around me screams "All is right with the world", my yard is overflowing with blooms in shades of purple, orange and red and green, green, green everywhere.  In July, I'll put my yard up against any other in looks.  It's not a well tamed and weed free yard, it is ALIVE and wild and gorgeous and it fills me with joy just being in it.

The feral-ish outdoor cats we care for are fat, lazy and happy.  They lounge on the furniture and luxuriate in the sun.  They have forgotten all about the harsh, prolonged winter we just experienced that really only left for good in the middle of May.  It's easy to forget how cold and bleak the winter can be when you feel the warm sun on your skin.

Somewhere in the back of my mind, however, there is that nagging, niggling little thought about how fleeting this all is.  Summer, as majestic and rich as it is, is only here for a few short months...thirteen weeks...twenty six weekend days...ninety some-odd total days.  

And then, the dying begins.  The petals drop and the days get shorter.  The leaves start falling and everywhere has the smell of rotting, dying vegetation that only weeks earlier was a delight to the eyes and nose.  

And I feel myself dying with it.  My life becomes smaller in the dark, cold time of the year.  I retreat within myself, like a caterpillar making a cocoon.  I want to sleep a lot.  I want to eat and sleep and watch bad television and pretend that it isn't happening...but it is and it does every year...  if I am lucky, I guess.  If I am lucky, I will get to experience this for many, many years to come.

I find that the older I get, the harder this change is for me.  If find myself waking up in July dreading the end of what has really only just started.  I get myself worked up about sleeping too late or missing any, tiny part of it.  I mourn every lily at the end of every day.  I wonder if I am missing it in my mourning.  Am I missing the beauty because I mourn it's passing?  Or, is there beauty in both?  The beauty in a lily is in the fact that it is impermanent.  It awakens on the day it is ready and for that day, it is full of life.  When the sun sets, it is all over.  This doesn't make the lily less beautiful, but more. 

It is July.  I live in the Midwest, outside of Chicago and the joke here is that we only have two seasons:  Winter and 4th of July.  Sometimes, it's "Winter and Road Construction".  Maybe that is part of my problem.  Once the 4th is past, I start thinking about that other season.  I am an optimist who is constantly warring with the pessimist inside.  My optimist is a bookish wimp and my pessimist takes steroids and works out...a lot.  My optimist tries to use logic:  "It's only early July!" and my pessimist sends her a mighty backhand.  My pessimist would always rather fight than reason.

July fourth is tomorrow.  It is high summer; hot, fun, full of life and food and festivals and carnivals and music and fireworks.  It is a cause for celebration and something to think about when we are knee deep in dirty snow on a dark and miserable January afternoon.

Summer is a limited edition and each one, though similar, is unique.  Grab on to it, bury your nose in it and breathe deep.  Make a memory and hold it close to your heart.  

We are alive in this glorious, fleeting moment.  Let's make the most of it.  And tell your inner pessimist to shut it.

Wednesday, July 2, 2014

An ode to my BFFFF

Oh, yes.  All the F's have meaning.  :)

We met about eleven years ago.

Our kids were attending the same preschool and after a few months of fawning over the adorable, blue eyed and blond haired kid with Down syndrome in my son, Evan's class, I decided that I would seek out his mom when I got the chance.

The chance came when Evan was turning four and we decided to have a party for him.  Since Nick was in his class (and I was in love with him), he got an invitation.

And his mom called me up, clearly emotional at the invite.  It turned out that it was his first invitation to a party and it was a pretty big deal.  Most parents of kids with obvious differences would probably agree.  We are all pretty sensitive when it comes to our kids being included and when it happens, we bawl.

One of the things I have come to realize about being a parent of a kid with Down syndrome is that when Charles was born, I was immediately given membership to a very cool and exclusive club.  I'm not saying all the members are awesome.  All Ds parents are not created equally.  We are not all "special" or "patient" or even "nice"; but, I have met some very, very cool people because of it.

Christy is one of these cool people.

So, we had our first phone conversation and by the time it was over, I knew that we would be at least BFF's if not BFFFF's.

I knew this because in the first five minutes I had already told her about my love affair with Dave Matthews and how I didn't want to actually, physically stalk him because I loved him so much that I didn't want to mess up his life.

Yes, I realize that this confession makes me sound like a lunatic.  (and just as a side note, I have calmed down over Dave Matthews, though I would never kick him out of bed turn down an invitation from him to play Canasta.  Jon Seda, on the other hand)...ahem...anyway...

I think the fact that she did not scream "WRONG NUMBER" and hang up on me, but patiently listened and then confessed her own super weird celebrity love affair fantasy cemented our friendship like crazy glue sticks to fingertips.

We were bonded for life.

I am grateful to her for so many reasons.  Here are a few:

  1. I am kind of a shitty friend.  I am super demanding and I have very, very thin skin.  She lets me rant like a two year old who dropped her ice cream and patiently waits for me to stop my temper tantrum so I can apologize and we can move on.
  2. Because of number 1, I have very few, real friends.  She is the kind of person that has people lining up to be her BFFFF and the fact that she gets me makes me feel pretty good.  
  3. Even if I am not her number one BFFFF, she never lets on.  I am sure she reassures those other friends that they are number one with her AND THAT IS OKAY WITH ME.  But, I know the truth <<< wink >>>
  4. She has my back, always.
  5. She is incredibly funny and she has started her own blog.  I promised I would try not to be jealous even though she out-funny-ed me in the first day.  Remember number 1?  Yeah...
Here is the link to her super funny, new blog.  Please check it out, but don't leave me, okay?  I am ridiculously competitive and I have huge abandonment issues...

Saturday, May 31, 2014


Reggie Jackson's number on the Yankees.

Five years into the "forever 39" phase of my life.

The age my mom was when I got engaged and the age I am now.

In two years, I'll be the same age my father was when a massive heart attack cut short his life and the same age my grandmother was when I was born.

I'm thinking about those people who are gone.

I'm thinking about what birthdays even mean.

This is not a significant number, but on the other hand, birthdays seem to gain significance as I get older.

I'm thinking about Meg Ryan in "When Harry Met Sally", crying about turning forty and Billy Crystal is incredulous because she won't be forty for eight years.  I am the Meg Ryan in this scenario.

I am thinking about ice cream trucks; the miracle I thought they were when I was seven and the smelly, speeding, overpriced nuisance I think they are now.

I am thinking about how long the summer seemed when I was a kid, even as a teenager who slept away beautiful, fragrant days and how short it seems, now.

I am missing the days of homemade cards written in just-learned letters by chubby boy hands.

I am hearing that line from a Billy Joel song; a line he probably wrote on a birthday of his own:  "The good old days weren't always good; tomorrow ain't as bad as it seems".

It's comforting, in a way.

Forty four.

It's not so bad.

Monday, May 12, 2014


It has been too long since I have written a post.  I have been consumed by a bunch of crap, not the least of which is getting my middle son placed at his home high school.  

Here is how it is going so far, in a nutshell:

  • Have first meeting cancelled
  • Freak out
  • Finally have meeting three months later
  • Find out the "team" has no intention of letting my kid attend his school
  • Fake smiles all around
  • Virtual head pats for the adorable boy who brought his own notes to advocate for himself
  • Mom ends meeting by admonishing the team for their lack of creativity

Before this meeting I was pretty sure that the "team" besides me and my husband were not going to be keen on Charles attending his home school, but I maintained the optimism that comes from knowing that you are right and they are wrong.

This was so, so stupid of me.

Here is the letter I handed out to the group before the meeting:

Dear Team,

This is my son, Charles.  We are here to find the best possible placement for him.  Before we do that, however, I want to remind you that he is not just a set of strengths and weaknesses.  He is a teenager, a much-loved son and brother, a good friend and a bundle of wit and sarcasm.  

He wants what all of us want out of life:  To love and be loved, to have friends and to be included.  That last part is tricky, because it can't really be quantified.  I am afraid that sometimes, the human being gets lost in the graphs and percentiles.  I am afraid that for some, my Charles is a challenge at best and a problem at worst.

Numbers are not my son's best friend, whether they are problems on a math worksheet, IQ points or figures on a percentile chart.  I realize that teaching involves testing and reporting, but I urge you all to look beyond that towards what really makes a life:  Being accepted and included.

Inclusion is not a pie in the sky fantasy, it is the only way to ensure that my child's life is seen as having as much value as those of his typical peers.  If you think I am exaggerating, consider what happens when people are segregated from society.  

Times have changed for people with Down syndrome, but until stories of prom kings and queens and team managers are more than feel good anecdotes, people like my son will not be fully participating members of society and that is what I want for my son.  My husband and I want full participation in life (not just school) for Charles and every child who comes after him.

I look forward to the day Charles walks across the stage in his cap and gown, ready to accept his certificate and to step into a world that is more accepting and inclusive than it is today, because of the work of teams like this.

Thank you.

(Charles' parents)

Having Down syndrome is like being born normal. I am just like you and you are just like me. We are all born in different ways, that is the way I can describe it. I have a normal life.  

~ Chris Burke

And they loved it. They thanked me for writing it. They had real tears in their eyes. And I thought: YES! They get it! It will be fine!!!

And then, Charles read his prepared notes; just a little bit about himself.





No one did, but they all beamed at Charles, like they were watching a monkey play the piano or a squirrel water ski.  


And I was thinking, "Really? You know people with Down syndrome have thoughts, right? They are not smiling dummies. They have independent thoughts and likes and dislikes and dreams for themselves."

I think somewhere along the line, they missed that memo. They were so busy putting kids "like these" in a little box, that they couldn't see all the stuff that made them individuals.

The box is called Life Skills class.

After Charles spoke and after we talked about his current "levels" the meeting changed from 

to this.

They had to break us.

They had to break us and fold us into the little Life Skills box to make their lives easier.

I want to know who coined the term Life Skills as the name of a legitimate class. I get it for kids who grow up in institutions (horrible) and might need to learn how to navigate life, but kids with families? Isn't it my job as a mom to teach my kids how to be safe and read a recipe and navigate a grocery store? Seriously, shopping at a grocery store is a big part of the curriculum, because they go there once a week.


Frankly, I find it insulting that this is the bar that has been set for my kid's high school career.  

"you know, we are gonna teach him about life and stuff; mostly, about buying Wonder bread and ordering at McDonald's".

What really stood out to me in the meeting (one of the things, anyway) is that they had a hard time wrapping their brains around how they would teach Charles about mitochondria in Biology.

I am not kidding.

Um, how about don't worry about it?

How about give the basics?

How about using the model from the science they teach in the life skills class as a start? ***headdesk***

Raise your hand if you have needed to know about mitochondria (unless you are a Biology teacher) in your adult life...hmmm, I thought so.

So, we have another meeting tomorrow and knowing what I know now, I am not overly confident that it will go well. My kid is not even coming, because I don't want him to hear (however nuanced and nicely sounding they put it) that he is not wanted at his own school.

I still know that I am right and my husband is 100% on board with me. That helps. But, knowing I am right and putting my kid out there are two different things. It is absolutely in their power to make things a living hell for him. And no one outside my little band of true believers will ever know that it was them that failed my kid and not the other way around. And who knows what kind of torment my kid will have to deal with if they don't give him appropriate support?

I believe inclusion is the only way forward. It's the only way my kid will ever be seen as an equal participant in life's journey. I also know that I will not sacrifice my kid on the alter of inclusion, either. I won't make him a martyr.

If I feel that they are setting him up to fail, I will relent and put him in the "other" class, or, I might just pull him out altogether and start a homeschool co-op with some of the other parents who are dealing with this.

It really shouldn't be this hard.

Here is the letter I wrote to keep myself on track at tomorrow's meeting. Please wish us luck.

Here we are again talking about Charles’ placement.  I appreciate this team giving thought to what my husband and I have said previously.  I realize that you don’t all necessarily understand why we are pushing so hard for inclusion.  The bottom line is simple:  It is Charles’ right to be educated amongst his peers.  As I have said before, it is not inclusion if it happens “somewhere else”, no matter how inclusive that environment may be.  Inclusion, to really, really work for Charles’ future needs to happen at his home school.  I understand that it will take some creativity on the part of this team, but more importantly, it will take open minds and hearts.  We are not alone in this thinking.  I know of many other parents in this district who want and are pushing for the same, simple thing.  
Yes, Charles will need supports and modifications, some of which will be major and ongoing.  He will need a modified curriculum, modified grading and supports with which to implement them.  Modified grading is not the same as “merit grading”.  Grading according to Charles’ progress on his IEP is not a ribbon for “trying”, but progress, which is all we ask for.  
As far as Algebra and Science go, there are ways to make these topics accessible.  If they are teaching a version of them in the self contained class at (the other school), they can be taught to Charles; again, this would just be a modification of the curriculum and it is a modification that already exists.  The tools are already out there in the district.  They just need to be implemented here at (the home school).
These many modifications will require a strong, one on one para-professional to implement.  Having a para would serve two very important functions:  Charles will have help and support for the classroom work and he will have someone to help him navigate a large school during passing periods and during less supervised time, like in gym and during lunch.  It will also alleviate some of the stress of the “unknown” in this inclusion process.  
Another benefit of having a para with Charles would be giving him the option of leaving a class and working in the library for a time, or taking a sensory break when things get overwhelming.  This will be paramount to Charles’ success.
While all of this sounds great and perfectly doable, I realize that there will be a learning curve for everyone involved.  My only real fear for Charles is the resistance to his being there.  Whether it be fear, or prejudice or outright hostility, I harbor no illusions that this transition will happen without a few issues.  Once Charles leaves my care and is in the school setting, it is up to the professionals present and in the larger school to take Charles’ success seriously; not just his academics, but his social/emotional wellbeing.
Let’s make this work.  Let’s not just “try” it, with an eye on the (other) program as our fall back.  Let’s just make it work for Charles and for the next child whose only wish is to remain with his friends and brothers where he belongs.  Let’s make (the home school) a model; not just for grades and academic achievement, but for inclusion as well.

Amy Dietrich Hernandez

*** UPDATE*** via my Facebook status

Success! They saw how passionate we were about keeping Charles a (home school mascot) and he will be one! We've worked out a collaborative program with (other school) where he will start his day there, get a few of the harder subjects in the morning, then spend the afternoon at (home high school) every day. We will push for full time as the years go on, but for now, this is the best of both worlds: more support in areas where he needs it and VISIBILITY at his home school. Whooo!