Graduation Day is Almost Upon Us

My oldest son is graduating high school (hopefully) in 10 days.  There were more than a few moments of doubt that we would ever get to this place.  Yeah, my kid has got some issues and I have more than a few issues with school, with expectations, and with life in general.

So, it is as a parent of this type of child, and as a person who hated and did not fare all that well in school, any school, that I look at these commencement exercises as not a beautiful stepping stone, but something to be done with, preferably quickly.

First of all, the ceremony is on my birthday.  Name for me one person who wants to sit at a graduation ceremony on any day, much less their birthday. Seriously, please, tell me and I will call them up so that they can take my place.  My kid will never know.

Second of all, I received in the mail a laundry list of rules of etiquette that irritatingly took the jam out of my doughnut.  One of the bolded headlines is MARCHING INSTRUCTIONS.  Is this a class of Hitler Youth, or just, you know, regular kids?

A few tasty excerpts that really get my blood boiling are:

" you have paid for your cap and gown so you can "keep it" as a souvenir"  

Whoo, whoo, whoo!  Effing really?  How much did that cost?  WHAT THE HELL DO YOU DO WITH A GRADUATION GOWN AFTER GRADUATION?  And why is "keep it" in parentheses?  Is it because you won't "keep it"?  Your "parents" "will" in their "garage"?  

What a total waste.

" boys should wear a dress shirt and tie, dress slacks with dark socks and dark dress shoes.  Girls should wear a dress or a skirt and blouse "

a)  Great.  There goes another $150
b)  What century is this?  Why do girls have to wears skirts or dresses?  

Gross.

" A professional photographer will be taking a picture of each graduate as he/she receives the diploma. (this part is inexplicably underlined)  These pictures will be available for purchase on line on a secure website. "

Meaning:  Cha ching  

I will take my own shitty pictures, thanks.

Oh, and " the ceremony will be recorded and you will be able to order a copy."

Oh, goody.  Nothing better I can think of than fast forwarding through two hours of yawn-tastic ceremony to watch three seconds of my kid NOT looking at the camera.  And I get to pay for it?  Where do I sign?!?  

One last thing:  "you will receive your diploma only if all financial obligations with the school have been cleared, and if you exhibit appropriate behavior during the entire ceremony."

I would love for them to try and tell me that my kid did not behave, so therefore, he does not get a diploma.  Nice try.  We are finally out of here, I think the kid is entitled to flip off the principal, no?  I mean, NO.  I don't want my kid to flip off the principal, but seriously?  Way to try and scare us into being good little automatons one last time.

Maybe I am just an antisocial jerk.  Maybe I just don't get it.  I mean, I get (to a point) rules.  I get (to a point) ceremony.  I just don't get why my kid can't wear sneakers.  I don't get why there is not an open bar for parents (they would clean up!) to make the ceremony more enjoyable.  And I really don't get mortarboards.  

Anyway, Happy Graduation, everyone!  ***takes a shot***
 

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.  

Seriously?  

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 This, this, 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.

Mitochondria

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.

AND THEY ATE IT UP!!!

SO CUTE!!!

SO GREAT THAT HE IS SPEAKING ON HIS OWN BEHALF!!!

I THOUGHT SOMEONE MIGHT PEE THEMSELVES FROM SHEER GIDDINESS!!!

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

THEYCOULDN'TBELIEVEITWASHAPPENING!!!

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 

this

 

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.

ARE YOU KIDDING ME?!?!?

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!

IEP's, Meltdowns and Being the Very Best Jerk I Can Be

So, we had an IEP planned for yesterday that didn't happen.  It was -20 degrees here and school was cancelled, but the meeting was called off last Friday for reasons I can best describe as vague.

I get it.  Things happen.  Meetings get cancelled.  Life goes on.

If it hadn't been the most important meeting in my kid's school life, I probably would have been fine with the change of plans. But, it is the most important meeting in my kid's life, so I freaked out a little bit.  I may have called the coordinator a few times.  I may have left a shaky voiced message on her voicemail.  Did you ever get so angry you were actually shaking?  Yes.  That.

Anyway, this was supposed to be a high school placement meeting for my kid.  It had been planned for months.  I was anticipating it with equal parts dread and excitement.  Dread, because I was pretty certain that their offerings were not going to be exactly what we wanted and we would probably be gearing up for a fight.  Excitement because, hey!  It's not every day that your kid starts high school! 

So, you can see why pushing it off (for three months!  What?!?!?) would not make me happy.  Now, I have more time to perseverate on the whole business; ponder the endless unknowns; fight to keep the devil on my right shoulder and the Polyanna angel on my left from throttling each other.  

Now, I've had a couple of days to digest the whole business and I decided that I would write a letter to Chooch's team, outlining the way I want his high school career to look; ideas that I have been thinking about since, oh...1999. 

and here it is:

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 work sheet, 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.