Thursday, December 01, 2016

With Two Years Left for Jack, Special Education Needs Support


FB skimming got me to this floor statement written by Senator Jeff Sessions of Alabama (in May 2000):

Education Discipline and Idea

The ideas were more likely about distracting from the real issue, which was that the federal government had been falling short of providing the funding it had promised for special needs students.

Fast forward to 2016, and Sessions being in the spotlight now as a possible U.S. Attorney General.

This article dips into my concerns:

Would Special Education Rights Be Safe With Jeff Sessions As U.S. Attorney General? by Tara Haelle

Some of my words:
I read Session's letter to the president in 2000, and it was a struggle to get through.
His letter reemphasized for me how easily facts can be swamped by anecdotes, and whole populations can be stigmatized for political purposes. If you read what he wrote 16 years ago, you get the impression that all special needs children (at least in Alabama) are violent, spoiled, over diagnosed, incapable of gratitude, are terrorizing their peers and teachers, are all capable of attacking their bus drivers, and are the reason our education system is falling behind. He's nice about it, but the goal is to take pressure off the fact that the federal government was falling way short of the promised funding for special needs children to be included in classrooms, and instead, 'let's ask ourselves if we really want these kids in regular schools,' subtext. Granted, I know people who likely think it isn't their responsibility to pay tax money which would help these kids remain included in the public school system, and many of those people will be needing our tax money in a few short years to cover the cost of their hospital bills for things like diabetes, cancer, heart disease, dementia -- so if we're going to play tit for tat -- my son will be paying taxes to help cover those deficits thanks to his extraordinary education. He will get into a good college, find a good job, make a good living, and contribute back to the society that supported him when he needed it. We will make sure of this as his parents, but we couldn't have gotten this far without the help of his schools.

Keep in mind, this was my nightmare back in the day, that people would associate any label with the potential for public threat, or financial drain that slows down all of the other 'normal' children, and this does happen a lot, believe it or not. So, I read his words and recognized that my anxieties from ten year back were justified, and though he might be tempted to use our story today to prove something or other about parental dedication, 'I didn't mean you. I meant children with uninvolved parents,' I would have to stand up strongly and insist that Jack's inclusion in classrooms has not only been good for him, but for our entire family, knowing this society will be here for us. In turn, we do whatever we can to be there for it. I realize not everyone shares my views these days, and lots of people have decided it's time to stop helping others, and that's why it took me ten years to admit openly that my son needed extra help in school -- I was so afraid of people only focusing on that and not his gifts. Now that we're so close to graduation, I'm relieved -- but it's an empty feeling, worrying about other families, other kids...We were supposed to go forward!
If our culture shifts back to excluding children, or demonizing the ones who are different, and this becomes acceptable to gossip about in public spheres again, I can't say I'll be surprised, but I will be incredibly disappointed.

***
You can write your Representatives, and help out with this issue.  Please do! 

Link to send an online message.
 


© Copyright 2016 Angeline Larimer

Years Later: I Only Regret The Worry That Tainted Our Fun

[Originally posted 1/18/2008]

Pina Blanca Family Portrait.

Because of my son's misdiagnosis, I was forced to become an outsider.
A dozen or more educators and health care professionals failed to understand him, and tried to tell us what we expected of him was never going to happen.
At any given time, it would have been easier to hand him over and hope for the best, but we have one life. I have one clear obligation before I die:

Don't. Fail. My children.

The Kids and Me at the Sea

Even if it means disagreeing with experts. Even if it means humbling myself, tears and pleas and uncontrolled desperation--"Please! Please, just listen. There's no need to comfort me. The problem is YOU. You don't know how to communicate with him, and so you're saying no one can, but you're wrong. I know you're wrong. You're doing no one any favors by underestimating him, but you'd be doing yourself a lifetime of good if you would just seek to be able to see what I see and protect what I'm bound to protect."

End of a great day

They didn't listen. Meetings all ended with me in frustrated tears, and they didn't listen. In fact, my unchecked show of emotion only confirmed that I had no idea what I was talking about. A stay-at-home-mother's instincts are nothing compared to the ganged up opinions of over confident/impatient educators and politicians with a PhD.

What I saw as discomfort and shyness was really 'detached, severe emotional' blah blah blah. Not talking meant mental retardation. Not responding, making eye contact with a total stranger meant a life time's diagnosis of low functioning abilities. *He was diagnosed low functioning.
S.W.A.K.Father and Son by the RiverFamily of Saguaros

Once it was decided, that was it.
The year that followed, I had a hard time believing anything in this country works the way it should. Nothing was uncontaminated. Everybody was pushing something for their own gain, and dropping the ball.

Where do you go when you need REAL help. When you need to trust that help? It was nowhere. It was the the low point of a fairytale and I had no magic powers to protect us.
We were fortunate. I have internet access. I can afford to purchase a book or two which would help lead us into the right direction. We could put up the fee for the Camarata evaluation. We could drive to Tennessee. We could MOVE to a better school district, where the educators have been godsends. Absolute godsends.

Not everyone can do this.

It aches sometimes, thinking of those parents and their children.
A year ago, I was not gonna make it much longer.
If one more person took me aside in real life and said my child was defective, I wasn't going to make it. I was probably going to strangle a bus stop monitor or two. A catty teacher gossiping about my child in the hallway after I spent a day volunteering in the Kindergarten classroom.

I have a master's degree, but was cutting shapes out of papers for a teacher who talked down to me and was nasty to my son and all the while I thought to myself, 'Make nice. Make nice. You must do this so she gives him a chance. You must do this until he gets the chance to prove himself.'
I was willing to do whatever it took, I thought.

But it goes against nature to endure such criticism of one's child.
I don't care how much they're trying to condition us now to accept the observations of total strangers.
It is not all right to write off someone else's child.
JoJo's Circus Fans Always Time for Tag
Mother and Son Torturing My Pirate Son First Game Day
It is not all right to insinuate to a mother that she should not have any more children.
The harshest blow of all. So cruelly carved deep inside me, it crossed my mind every time I considered the question, "When are you guys gonna have any more?"

"You should have him genetically tested before having any more children."
A Kiss For Mama
(Mother's Day, 2004)
Is there a more devastating insult to a mother in love with her children?
Stark contrast to my old landlord's comment when Jack was six months old, "You oughta have a dozen of him!  That's a perfect boy you got right there!"
In four and a half years, from perfect to 'not good enough for our society.'

Smack. A cold hard smack.

We were willing to put in the work. Gladly so. To tell us not to bring more of him into this world after all the love he'd given us, all the joy and reasons to be proud, to have someone say that to us like he was nothing and neither were we? I had great hate.

I'm not ashamed of it, either.
My Jack
I was wired to protect and I will not shake that off so that others may feel comfortable in their half-assed realities.

We pushed through because I couldn't believe it. God wouldn't let me.  I said, 'Help me cope,' and my instincts would not, so I took it as a sign that I wasn't meant to, and it turns out, Jack just needed patience. He's not on the spectrum. He has a speech delay, but so what?  He has above average I.Q. and he's a loving, funny, incredibly gifted boy, just as we knew all along.

All the rest of it was worthless misdirection. Time taken from us.

I don't hate any more, but I still feel.

I can tell you, most humbly but with great pride, the most courageous thing I ever did was NOT believe.

Last night, I met a woman who said she knew Jack from Scouts. She said, "He's a very well behaved little boy," and I very nearly cried, though I've learned to gulp it down. She had no idea what we've been through. No suspicions as far as I could tell. To have another mother say such a nice thing and not know his story...
It's the most rewarding thing.
Jackie

It makes me wish I'd gone straight home after Jack's misdiagnosis and conceived quadruplet boys...because this world needs more Jacks, and you'll never convince me otherwise.

Forgive me that I keep bringing this story up. It's just that other parents have contacted me recently, having done web searches about this subject. So many similar stories, we will get through this.  Our children will do great things, if nothing more than fill our hearts with faith in the human spirit again.  What was taken away in this fight to protect him has been given back more purely with each and every milestone achieved.

It's hard to believe that it has almost been a year since I was at my lowest over it all.
I was low.  When you can't trust people to help you with your child, it's tough. You go a little off the grid.  You have to.  It's so lonely out there, and people are less and less likely to go out looking for you, too.
But that is not my life any more.
My son's wonderful spirit brought me back.
The Kids and Me Along the River

***
[12/2/2010--almost 3 yrs. later]

Jack was misdiagnosed with low functioning autism and severe expressive language disorder the day after his 5th birthday, almost five years ago today.
The things he did to amaze us were ignored throughout his evaluation, and the child they described on paper was not my son, so we rejected that diagnosis.
And it was one hell of a year that followed.
Halfway through Kindergarten, we took Jack for a second opinion to Dr. Camarata in Tennessee, and after that evaluation, Jack was taken off the spectrum and given the diagnosis of mixed receptive expressive language disorder.  This diagnosis made complete sense to Tom and me, but was irrelevant to his Kindergarten Center.  We moved.

Jack has attended an incredible public school since the 1st grade.  We owe them our sanity.  We owe them our son's happiness.  His speech delay could not be fixed with the snap of the fingers or a quick fix new drug.  He needed patience from educators who believed that he would get there.   These people have been incredible.

Jack still stumbles to express his more complicated opinions, depending on the circumstances.  For the most part, his receptive language is up-to-date, though there were a few vocabulary words that escaped his data bank during the three silent years.  He knows what you're saying if he hears you (he can still zone-out out of habit, from when it used to be the lulling sound of the undecipherable human voice that he heard). 
When he speaks to me, there's no miscommunication.  If I don't know what he meant, I ask again, and visa versa.  We're like an old married couple, "That girl's name who had the warm hands?"  "Beatrice."  "And the one who lives with her.  The man?"  "Her husband Mark."  "Right."  "What about them?"  "They're nice."  "Oh.  Well.  I'll tell them you said so."  "Thanks."

Writing is his least favorite thing to do, but I find his sentences to be like poetry.  Like reading Gertrude Stein or Bob Dylan.

 I know he'll get there.  Just as he has mastered so many other things. 

This year it has been piano and basketball (last year spelling bee and drama club).  His piano instructor thinks Jack has a gifted memory and is equally strong on both hands at the keyboard, plus he's getting so that he can hear a song and play it without seeing music.  He's had lessons for three months.
Basketball, last practice he made five shots in a row.  He said to me (yes, SAID to me), "Mom, I hope I make a basket for Eleanor's birthday."  That was his motivation. 

And Pickles said upon hearing that, "Oh, yes, Jackie, that would be so awesome for my birthday.  Do it!  Do your best." 

My kids are awesome. 

Jack's Luigi (more like sgt. Elias from Platoon)
He's also a goofball.

His letter to us at the end of last year:

"Dear Mom & Dad,

Both of you did a good choice and did the right things. You liked me a lot even if. If you give me something special and wrote letters and be nice to me my bad luck is about to change every thing is okay and cool.

love, Jack"


Never give up.



[12/2/2016]

 
Looking over my shoulder just now, Jack read what I was reading, and said, "Awww."  Then,  "My writing was terrible."

He's almost 16.
 
 

© Copyright 2005-2016  Angeline Larimer

Saturday, November 19, 2016

All These Places... To Jennie on Her 43rd Birthday

 
 
 
"Keep posting.  I'm living vicariously through you right now."
 

Every special place I've been since that night in the long blue dress on Bourbon Street - my 40th birthday - I have had you with me, I promise.  You wrote me that night while I stood lost in the streets in a blur of life - I knew where I was, but I didn't know who I was - and you wrote to me, my saint, and those words have stayed with me always.   

You made me appreciate my life again, make the most of all of it since.
There have been so many cliffs, so many things just outside my comfort zone.  I hear your voice, though, that laugh, and I take a breath.  Every brave moment has been because of you.  You should be here.  It's not fair that you're not.  But so long as I'm still here, I will remember you, and I'll take you with me...
 
 
 
 
 
 


  
 
 

 


 
 
 
© Copyright 2016 Angeline Larimer

Monday, November 07, 2016

Holy Grail Family



© Copyright 2016 Angeline Larimer

Halloween 2016 - Holy Grail Family




 

Last year was the first time since Pick's first Halloween that we did not attempt to dress up as a foursome theme.  Tom and I were in NYC, kinda sad on Halloween night walking around the city without the kids.  It's our biggest family tradition, but they're growing up, and maybe it was more our thing than theirs, we told ourselves.  Jack's taller than Tom by a few inches, even.  We thought maybe the kids would run with that freedom of having us out-of-town to do their own thing thereafter - or in Jack's case, maybe be done with Halloweening.   If we returned and they mentioned enough was enough regarding the productions, we'd be okay with it (maybe).
 
Then this year, we all attended a local showing of "Monty Python's and the Holy Grail" and had a blast - particularly because Jack knew all of the lines, and was in and amongst his people.  Pick knew them all, too, but abstained from yelling them out with fellow moviegoers, because she's a middle school girl.  She did say on the ride home that she wanted to be the French Taunter *if* we decided to go with the Monty Python theme, and that's all I needed to hear.  From there, the gang was back together. 



 
© Copyright 2016 Angeline Larimer
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