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***
 

This is Nothing Important

My dear husband and I were talking about dream "visits" the other day.  If you have had them, you know the kind I mean.  If not, they are the kind of dreams that feel as if you have spent time with someone that you love that has passed on.  I feel lucky that I have them, even though they usually always make me cry upon waking.

Occasionally, I have "place visits" in my dreams and these make me cry, too; mostly because I am usually dreaming of some wonderful destination that I am longing to be in; Paris, the pyramids in Mexico, or my grandparents' old house that has long since been demolished and turned into two family homes.  If I could time travel, I would go back to the brick front steps of that house or to huge swing in the backyard just to have another conversation with them.  God, I miss them every day.

This morning, I had a visit of another sort.  I woke up suddenly to the sound of crashing from the living room.  Since I have cats and am used to being awoken thus, I just figured I would survey the damage when I was good and ready (it was not the Christmas tree as I had feared, only some heavy cookbooks).  I managed to fall back to sleep almost instantly and immediately fell into a luscious visit with a 6'4 WWE wrestler.  It was the kind of dream that made me feel like I needed a mental shower upon waking; or a long soak in a hot bath for real.  It was a very nice dream.  It was so nice, in fact, that it made me feel guilty enough that I needed to write up this post; as a kind of confession.

I know I can't control my subconscious.  My rich fantasy life is as deeply embedded in my DNA as graying, mousy brown hair, blue eyes and irrational guilt.  They are all parts of me that I am learning to embrace.

Whatever it means and however it makes me feel, it was nice to wake up with a smile on my face, for once, on an otherwise dreary Monday.  Now, if you don't mind, I am going back to bed.

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!

Not Quite Ready for Acceptance

Still angry
trying not to let it
poison me

I wish you would 
just listen

Hear my pain

Maybe it would 
get better
go away

If you would just listen

I could tell you how I feel

I might yell, cry, scream

but it would be out 
in the air
instead of wasting me away

The truth is never the enemy

Lies kill and truth saves

I can't pretend to be okay

I can't pretend nothing is wrong

I can't

I just can't

Anger

Wanted
Coddled
Sheltered
at the expense of the rest

Should have called
done 
something
different

I am different, too

Stronger
capable
able to take it

Fuck your sadness
Fuck your misplaced anger
Fuck your blinders

Made my mountains into molehills
my beauty into bleakness

Where is the heart?

I'm ringing and it's not
home

De-cluttering My Soul

I've been thinking about what it means to be me.  I'm wondering if I met me, what my first impression would be.  Fat?  Chip on her shoulder?  Nice teeth?  Well spoken, but salty?  Funny?  I wonder if hypothetical me would get past fat and chip on her shoulder to see the truth.  The truth is, that I have a hard exterior made up of guilt, sadness, fear, anger and confusion covered in a thin veneer of sarcasm.  With a little pressure, that shell yields to a gooey center of love, hope and dreams.  I'm basically a Cadbury Cream Egg.  No wonder my husband likes me.  I need that shell to protect what is really worth protecting.  You can have my anger and my sarcasm, but my dreams?  Not without a fight.  

The truth is, that up until just a few days ago, fat was all I was seeing. You'd think since having my last baby 13 years ago, I would be used to being fat, but I'm not.  There's fat and there's FAT.  Right now, I am at FAT and I'd like to get down to fat before spring comes and I can start training for some kind of crazy physical feat; like a triathlon or another marathon (read my condensed marathon story here ).

More about those plans later.

So, up until a few days ago, I was hyper-focused on what was going on with my exterior, to the point that it was exhausting.  I still had obligations to family, friends and the various committees I am involved with, but doing even the most basic thing felt monumentally hard.  I blame it on being heavier than ever before and being just a tiny bit depressed about it.  You know that things are not going well when brushing your teeth seems like a real chore; like something you need to cross off a list.  Forget the actual lists I have.  That shit is on the back burner.  

Now, the list has only one item:  Be the person I was meant to be.

That's it.  Of course, there are sub-headers and lines a through z.  There's a lot that goes into being that person.  But, the way to get there is simple:  Do the things that move me towards a goal and don't do things that move me away.  For example:  I want to complete a big, physically demanding goal by the end of next year.  In order for me to do that, I have to be physically and emotionally ready.  It will take many weeks, many smaller goals and many setbacks to achieve it, so I need to give it a good long time to be accomplished.   

I am not very patient and that has been a big part of what has kept me FAT.  It took too long to see results and I got mad and punished myself by gaining more weight.  It's a long and complicated journey, this one with food.  Everything I think about myself plays into how I treat my temple (it's a god damned temple, you hear me?!?  It just needs some slight retrofitting and remodeling and it will be a thing of beauty for years to come).  

This journey is not about being hot again.  That ship has sailed.  And you know what?  I think that for the first time ever, I don't care.  I was talking to my sister the other day about this.  I said something to the effect of being invisible; that I have gotten to the point where I could grocery shop wearing a clown wig and no one would notice because I am a chunky, middle aged mom. 

Somehow, I've gotten to the point where no one outside my circle of family and friends really sees me.  Sometimes, I wonder if they even see me; me how I really am.  I think my husband usually sees the girl who met him at the end of the aisle eighteen years ago.  I can't keep up with that girl in a race today, but I sure am more thoughtful and more compassionate than she was.  I wonder what my kids see.  Do they judge my weight?  It makes me think of my maternal grandmother, whom I loved so much, and who passed away this summer.  She was heavy most of the years I knew her and I loved her.  My grandfather loved her.  They were happy and laughed and had fun, even though she was bothered by the weight and was always trying some kind of weird diet.  I hope that at some point she stopped measuring her worth in pounds and more in love; that which she gave and that which she received.  I wonder what she would tell me now about wasting time on things that don't ultimately matter.

Speaking of my grandmother:  I am also realizing that I have not fully processed the losses of this past summer.  I lost three significant family members, including both of my grandmothers and Oliver; a boy I never met in person, but learned to love just the same.  I've tried to channel my feelings into advocacy and writing and doing things that make my existence on this planet mean something, but at some point, I just need to sit with my grief.  I've been catching myself from falling into that vast, unwelcome valley, but maybe it is time to explore it a little.  We all have to walk through this valley time and time again as we age.  It should be like going home, but instead, it feels like an endless mire of tears and silence.  It's murky and dark and I am afraid.

I don't need to fill that valley with food, or approval, or laughs.  I only need to sit there and see that I can survive on my own.  All I need is a hanky and a hug when I emerge.

And to the people (they seem to be coming out of the woodwork) who want me to find Jesus/go into business with them/join their cult I want to say thank you for making me see that I am the only one who can fix me.  I think I am on the right track and I will burn your business card keep you in mind, but I need to step away right now.  I have enough crazy up in here, thanks.

So, the to do list:  Be the person I was meant to be 

     a) lose the weight

          1) make a list of achievable goals to meet the ultimate one

     b) sit with my grief

     c) start today

The Brassica Project

It sounds like a Cold War era thriller or some End of Days movie.  It isn't.

No, the Brassica Project is something so hideous, so unspeakably nightmarish that if it were a movie, it would be Saw 7.  Was there a Saw 7 already?  Well, whatever Saw comes next.

It started innocently enough.  A school project for science.  Yay!  This will be fun!  We get to do it together!  Over Spring Break!  

Wait.  What?  You have to complete a science project over Spring Break?  Uh, okay...less fun, but, WEGETTODOITTOGETHER!  What a great time to bond over Elmer's glue and...

Wait...

Oh, there's a list of items we need to buy?

And we can only use these very specific items?

But, Brassica at least comes in lots of colors, so we can pick that, right?

No.  


It's not that Brassica is ugly.  Okay, for a flower, it's kind of ugly. Yellow is not my favorite but, whatever.

The first time I had to help with this project, it was for my oldest son.  The lessons I learned the first go round were: 

1. Children should never be left unsupervised with paint:  Ever.
2. When paint dries, the dowel you so carefully painted sticks to the newspaper that you put down to protect the table.
3. I would rather sell my soul to the Devil himself than ever, ever undertake this gluey, horrific nightmare again.

After buying three different colors of pipe cleaners, wooden dowels, two colors of some eco-nightmarish foam, paint and a terracotta pot to put it in, I was down two hours of my life and $25.

And, just as an aside, what is the deal with learning about plants by building a replica?  Can't we just grow one?  Wouldn't that be 
smarter/easier/more meaningful/less wasteful/greener?

And the fun hadn't even begun, yet.

Turns out that this Beelzebub foam does not stick very easily.  And the wooden dowels need to dry over night before gluing them into place...which then, also needs to dry overnight.

Overall, we spent 5-6 hours on this ugly, useless project; all for a smiley face sticker and a place on the shelf with the other 27 identical, crappy looking "flowers".

WHAT THE HELL?!?!???

I tried to block it from my memory and it worked until the last day of school when B brought it home.  

Really?  Now I have to display this?  Where is my jar of tonsils?  I want to put them on the same shelf. Pretty sure that procedure was less painful and no less attractive.

After a few months, I was able to remove this atrocity from view, under the guise of "saving" it (in the garbage can) for the future.  

I almost forgot about it.  I had been drifting blissfully through the school years when, I saw it:  The instruction sheet for another Brassica project.  NOOO!  Dear God, NO!!!  WHYOHWHYOHWHY?!?!?!???

We managed to live through that one as well, but barely.

Our two youngest are so close in age that they are in the same grade at school.  When my middle son didn't receive this project the same year as the youngest, I thought we were in the clear.  

But then...

Like an antelope munching unawares, I was pounced upon by another sheet of instructions.

This time, I flat out refused.  I voiced my concerns to the teacher.  I told her where to go what I thought of this insane project.

In the end, I relented, but only because I liked this teacher so much in every other respect and because the class was such a small size that having C's ugly flower missing would have been pretty obvious.

Three boys.  Three nearly identical wood and foam and pipe cleaner flower models.  They seem to have managed to escape mostly unscathed, but I still have nightmares about it.  I wake up screaming "Wait!  The glue hasn't dried!  The petals are falling off!", before I realize that I will never, ever again need to undertake another Brassica project.

Confuddled

Isn't it great when your friend calls you up and says "Hey!  Let's go to the beach tomorrow!" and you are all "Yeah"  and "Cool" and "Pick you up at 10:30"?

What is not great is trekking to three different stores to purchase:

a 25 pound bag of ice
a bottle of Mai Tai mix
and
two lounge chairs.

But, Hey!  It's a beach day, so WHOOO!  Once that is all sorted out, it's sun, sand, trashy novels and good times until the kids get off the bus. 

Sounds simple, right?

Wrong.

We pull up at the notsogreat beach because the totallybeautifulandawesome beach is too far away when we only have a couple of hours.

We lug the (extraordinarily heavy)
beach chairs
bag of ice
Mai Tai mix
Towels, books and other crap
down the (ridiculously long) path to the beach.  

First though, we read the sign that says:
"the beach is only open on weekends after August 10th".

But, that can't mean anything, right?  I mean, how do you close a beach?  It's a beach for godsakes, not a shoe store.

So, sweating and cursing, we pass the filled park and playground (What kind of weirdos hang out with their toddlers at the park when it is 88 degrees out?)  Why aren't they in the water?  Stupid jerks.

I see the sign and closed gate and in my brain, I know what it says but, my heart won't believe it until I've gotten two feet away and can read it in full view of these dillhole moms.

BEACH CLOSED

Here is the part where for the second time in the matter of an hour, I scream in public.  The first time, was in the Home Depot parking lot at some totally oblivious plumbers who decided that parking their van crooked, a foot from my driver door, when there were 347 other spaces they could have parked in, was a great idea.  

How do you close a whole lake?  I mean, really?  Who decided that only rich people, who can afford docks across the street from their lovely houses get access?  Who decided that the rest of us losers only get to swim between May 25th and August 10th?  Oh, and only at the crappy beach that they've deigned to let us use?!?

When you start screaming about the haves and the have nots in the parking lot, it pretty much means that beach day is ruined.