Macbeth and Autism…Oh My

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Bottom line is the boy is sixteen years old.

SIXTEEN.

By now you’d think I’d be able to see these things coming.  You would think, after sixteen years, the gobsmacking would not still take me by absolute surprise and leave me speechless.  You would think this would be the case but…NOPE.

I will tell you that as of Monday, when your spectrum kiddo begins to speak of Shakespeare and Macbeth, it becomes something similar to a freeze frame moment where the mom’s brain freezes into a slow motion thing and then it takes a while for everything to really sink in.  It’s been sinking in since Monday…. ever since my sophomore-in-high-school, regular-ed-classes-with-NO-assistance-spectrum-kiddo and I had this conversation on the way to school on Monday….

Me: So what do you have going on today?  Tests? Quizzes? Anything special?

Him: Nothing really that I can think of.

Me: Okay.

Him: Oh wait.  Did I tell you what happened in English?

Me: No.

Him: On Friday my teacher told me I got the highest test on the Macbeth final.

Me: Wow? Really?

Him: Yeah, I got the highest grade in A-L-L of her classes.

I. Kid. You. Not.

And this is where mom goes into that gobsmacking, freeze frame, s-l-o-w motion, speechless, jaw hanging open kind of moment.  And, yes, after sixteen years you’d think I’d be better at this and it would not take me by absolute surprise and leave me gobsmacked but….M-a-c-b-e-t-h and S-h-a-k-e-s-p-e-a-r-e with thee and thy and thou and inferences and hidden meanings all mixed with autism and speech processing delays and a boy who has always held a general dislike of books.   Because we’re still trying to master new English and this is Olde English. And this is the same boy who does not do chapter books with characters and emotions, developing plots and keeping track of events.  This is the boy who only started reading library books in fourth grade when he discovered the scientific reference book section with books about spiders and reptiles.  Did I mention this is the same kiddo who had a “C”in English just a month or so back?  Yeah, same kiddo. So, of course, G-O-B-S-M-A-C-K-E-D, slow motion, freeze frame moment for the mom.

Me: W-O-W buddy.  That’s awesome.

Him: Yeah, but I’m not sure I made an A.

Me: Really?  I bet you made an A.

Him: Maybe everyone else just did bad?

Me: I don’t think so, buddy.  I bet you made an A.

Let that sink in, my friends.

 

ALWAYS.  ASSUME. COMPETENCE .

And, turns out, when I picked him up yesterday he let me know he DID indeed get an A on the Macbeth final.  Turns out the rest of the class did not do bad :). He just happened to do VERY well and when I contacted his teacher she tells me  it was an extremely challenging final that required a high level of recall and analysis and the spectrum kiddo set the grading curve for ALL of her classes.

Yeah, that’s an unexpected and delightful moment. I’m also even more convinced than ever that different is not less.

Sparkle On, Wonder Souls.

 

 

Let it go……

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Once upon a time, when my boy was eight (he’s sixteen now), I was in the middle of trying to arrange an evaluation for my boy and, being the new girl in California that I was and not knowing who to call, I just started dialing numbers to children’s hospitals. I first made contact with a lot of people who answered phones but did not work with children. But on this one fluke of a call, I made contact with a REAL doctor….I know, I know….a doctor answered his own phone! No secretary, no scheduler, no front man/woman. I simply dialed from my kitchen table, the phone rang in his office in the hospital and he did this crazy thing….he picked up his own phone.
 
When he answered his hospital phone, I asked for the doctor by name (and for the life of me, I cannot remember his name) and he said it was him. I asked if he did evaluations. He said that the hospital no longer did developmental evals for autism. I was polite and kind and thanked him for his time and I think he must have sensed my sadness and frustration because he kept talking. This doctor began to share with me his thoughts on how, from all he’d researched, he saw autism was a genetic issue. He said we all have markers for autism.
All. Of. Us.
Yep, you and me and everyone else. He said we all have a few minor markers and we just learn how to compensate for the few markers we have. He said what happens with autism is the genetics of the mom and dad, and all their genetic history combined, will amass a multitude of markers in some kiddos. According to him, what happens to some kiddos is they get more markers than they can process. Where one or two of us might have a few quirks, some kiddos get a lot of quirks and it’s hard for them to process so many quirks.
 
Anyway, I have a hard time explaining it was well as he did but that simple explanation has always made a lot of sense to me. Over the last decade plus when the world at large wanted to point fingers at refrigerator moms or broccoli or vaccines or the flu or induced births or older dads or pain meds during childbirth or the color of the sky, this theory and his words made a whole lot more sense to me. 
It’s genetic.
Sweet parents, hear me when I say this…..autism is NOT your fault. You didn’t do anything to cause your child’s autism. The truth is there should never again be any flashy, headline stealing so-called cures or blame on this spectrum. There are no cures for autism because nothing is broken…not you and not your child. No one is wrong or bad or neglectful, my friends.  Not you or anyone else.
 
You are good parents,
you are great people and
you have a beautiful child who can’t wait to conquer this world…one day at a time with you right by their side acting as their guide and advocate when needed.
 
So, let go of your guilt and the weight of the world that you heap upon your own shoulders, Sparkle moms and dads, and just get on with being the parent and champion your child needs you to be because that is the thing that really matters and will make all the difference on this spectrum journey.
 
Autism is simply genetic.
Sparkle On, my friends.

When Grizzlies Matter

 

There are moments in this life when we all need to take a step back, take a deep breath and be the calm in the room.  There are moments when we all need to stop being offended and taking our frustrations out on others.  There are moments when we need to stand down and realize not every moment is a grizzly moment.  I get all of this and I have spent my adult years reminding myself of this more than I’d care to admit.

That said, there are also those very pivotal moments when we, as parents, need to stand up, to grizzly up, and to step forward in order to effectively advocate for our children.

My best Conversation to date with a school administrator:

Following a two hour melt down where my son was under the desk screaming and the class had to be evacuated. After two hours of the school floundering as they attempted to resolve the situation, I was called and asked to step in.  It took me all of three minutes to do the resolving.  After the situation was resolved, the principal asked me back to his office for a chat.  It went like this….

School Admin:
“I am concerned that your son’s behaviors are impacting the instructional minutes of our other students in his class and I will not stand for instructional minutes to be sacrificed.”

Me:
“I am equally concerned that every time his teacher fails to stand up and manage his behaviors you and she, as a team, sacrifice his ability to be viewed as just another kid in his classroom.  Every single time you allow a frustrating moment to deteriorate into a melt down, HIS instructional minutes are not only impacted, but HIS social opportunities with HIS peers are LOST.

You are allowing a teacher’s inability to STEP UP to compromise his ability to simply be seen as a kid, a regular kid, and you are, instead, allowing him to be seen as chaotic and frightening every time she misses the cues because, for some entitled reason, she doesn’t think kids LIKE HIM are HER job.

Every single time she fails to do her job she takes a little piece of his childhood away from him.”

School Admin:
*insert both pin and jaw dropping*

 

Sparkle On, my friends.

Papa John’s for the Win

Johns pizza

There are just so many moments that you don’t expect. For as many years as we have been on this journey, the moments still leave me gobsmacked.
This is what happened this weekend….

Me: Your brother isn’t feeling well. I’m going to run into the UPS store to mail a package to your sister. Would you two feel like eating a pizza?

Spectrum kiddo: Yeah. That sounds great. I can go order the pizza, Mom.

And that’s the moment.
That moment that becomes a combination of overwhelming pride swirling with a smallish rumble of anxiety that mix awkwardly as the waves of pride and anxiety crash together unexpectedly. It hits me hard but I also know he is watching me and waiting for my answer so I casually catch my breath.

There is no reason to tell him “no” and every reason to say “yes” but it’s something we haven’t done before so, after I catch my breath and readjust my thought process, I answer him. The UPS store is one store away from John’s Incredible Pizza and it’s a quiet day so I say the thing that still scares the mom in me.

I tell him without any visible hesitation, “Yeah, that sounds great.”

I hand him the money and I watch my son walk away…in the opposite direction of me… as though this is our norm. Every one in that part of the world could look at us and not know any difference. They could think this IS our norm but I know. I know this is our first time and I need to steady my mom nerves so I overpower any residual helicopter tendencies and let him walk away…on his own…just like any other sixteen year old boy. And, surprisingly, I keep right on breathing and the world does not even stop spinning.

And, just like any sixteen year old…. he orders the pizza, pays for the pizza and walks out of that pizza joint like a boss with the exact kind of pizza he ordered and change in hand…like this is something we always do. And I casually acknowledge the accomplishment on the outside because I don’t want to embarrass him but, inside, I’m screaming and smiling as bright and big as the whole darn sun.

Thank you, Papa John’s Pizza for an unexpected milestone in our life. The person at the cash register probably never knew the sale was anything out of the ordinary and they treated my spectrum kiddo just like they would anyone else…with kindness and understanding…just like it should be. It was simple and profound and a moment I will not ever forget and perhaps the beginning of a whole new level of his independent life.

‪#‎neverforgetthefirst‬
‪#‎PapaJohnsforthewin‬
‪#‎screamingontheinside‬
‪#‎thebeginningofhislife‬

Sparkle On, my friends.

Don’t Be the A-S-S

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A Wonder Soul asked this last week about my kiddo and whether he had been diagnosed as severe early on. It’s a question that’s been trailing me all week. Back in the diagnosis days fifteen years ago, it wasn’t always a helpful process and doctors weren’t always very open or hopeful with the parents. I don’t ever remember hearing a functioning level discussed. One might think that because my son is successful in high school today (at 16) and is independent in his academics that it has always been that way. It has NOT. There were days when his behaviors nearly eclipsed his academics and put educational choices out of our hands.
What I do remember is him not being accepted into the same”typical” preschools his siblings attended because of his volatile behavior, his lack of speech, the fact that he was still in diapers at four, and because the preschool administrator looked at me like I had a third eye when I mentioned he was autistic. What I do remember is being in the special ed classes in preschool through our local elementary school. What I do remember is wanting my boy to be recommended for the combo kindergarten class Florida offered where two teachers (one sped and one reg ed teacher) team taught a class that was mixed with regular ed and SPED students….t-o-g-e-t-h-e-r. Yeah, we wanted to be part of that.
I remember the crushing feeling when I heard we would not be recommended for that class and, instead, would be placed into a isolated special day class for kids with varying disabilities.I remember the first day of that class. I remember walking in and knowing that class was not the right placement for us ….not because I didn’t want him with other kids like him but I knew, from the way the class was set up with toys and fun zones, that once he got used to playing all day, we’d never get him to buckle down and do academics again because playing on the computer and in the kitchen area is a lot more fun and behaviors would escalate further to get back to the fun zones he wanted.
That’s when I went back to the team and the teacher and I pleaded and I promised and I pledged all my time to them to help make up for the time my boy would take away from their other students. I also recognized that there was a chance I was in denial and the new placement wouldn’t work so I asked them to give us just three months. I promised after three months if it was not a good fit, I would be the first one to remove him.
I tell people often that that one decision changed everything. It was the difference between my son sinking and swimming academically. It was a risk and I understand they had never taken such risks before but, that day, they did and they gave my son the chance to rise up to the expectations set before him. To this day, those two teachers and the two aides in the class, to me, are the Godsends that changed the direction of our lives forever. Nicole and Kim (last names not used because I do not know if they would want them used publicly) were, and are still, the magic in our memories and I’m thankful every day for the risk they all took for my boy.
I promise you it was not a simple or easy year.
Progress was not magic.
My boy was not always kind and did not make great choices.
He challenged them every single day but they did not give up.  No matter how much he screamed in opposition, no matter how much he snotted on their clothes, no matter how much he tried to manipulate to get what he wanted…..they never gave up on him.
Later that year, when it was time for our IEP meeting in prep for first grade the first words I heard out of our team was, “We’re sorry.” Their response was stunning and, to this day, I still marvel at it. Their honesty, their transparency and their genuine love of their students is something all teams should aspire to.
A stunned me asked an obvious, “Why?”
As they spoke, I heard these words, “We’re sorry. We thought we understood your son’s educational level. We thought we knew how far he could go but we were wrong. We were all wrong. Your son is a red flag to us that there is a lot we don’t know and we shouldn’t assume we understand a child’s potential just because we know his current functioning levels.”
And like I said before, I’m not sure if my son was considered “severe” back in those early days but he was challenged enough not to be seen as a candidate for classes with his typical peers. What I do know now, with certainty, is where he is today because of the risks and challenges that were taken.
Lesson #1: Don’t be the a-s-s in the word a-s-s-u-m-e. Never assume.
Lesson #2: Keep raising goals because kiddos just might surprise you and rise up to meet them.  Listen to you…no one knows your kiddo like you do and if the powers that be can’t initially see it, keep working at it because there is nothing more regretful that opportunities not seized.
Sparkle On, my friends.
Never. Give. Up.

Teachers Are Like a Box of Chocolates

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I so vividly remember feeling overwhelmingly helpless during those early years of our spectrum journey. I’m embarrassed to tell you that I was literally in tears during our first few IEP meetings because it was so hard for me to trust my boy to anyone. I cried and I cried and I cried and the “team” would assure me they would take care of my boy and, as a trusting young momma, I’d believe them. And, honestly, sometimes they did take care of my boy and those teachers were some of the most beautiful souls I’ve met on our journey. I’m still so eternally grateful for some of them.

But, other times, they didn’t take care of my boy. Though they were not necessarily bad people, they were also not good to my boy and I’m not sure if the damage that is heaped upon a child in those early years ever has the opportunity to be undone.  It’s dangerous, as parents and guardians, to allow our own emotions (and sometimes grief) to cloud our view so much that we don’t see the educational environment clearly.  Those years when I used my wishbone more than my own backbone are still not easy years to look back upon.  I truly cried more than I grizzlied up.

I will tell you, eventually and thankfully, I stopped crying.
Eventually, I stopped feeling helpless.

Eventually, I stopped trusting that a teaching credential makes you a good person or qualifies any individual to spend time with my son in an educational setting. I would learn later that a teaching credential only assures a school district that the candidate has successfully completed a predetermined set of coursework. Now I understand it takes a whole lot more than a teaching credential to see a child’s potential and be a great teacher. It takes a special teaching heart that sees through the rough days and into the brilliance within the child. Great teachers also know that brilliance isn’t always easy to see at first because the shine can be clouded by a lot of other challenges.

Like I said, I eventually stopped crying.

Eventually, my backbone grew firm and the tears faded.
Eventually, I learned how the educational game is played.
Eventually I came to see that my son’s education would depend largely on my involvement in the school and my presence on campus. I also learned that I might not always be popular on campus and I would come to understand how much the teachers would not be my friends….because it’s all kinds of uncomfortable to try and hold “friends” accountable when IEP goals are not met, growth is not made or when the classroom environment is less than kind. “Educational relationships” are much easier to hold accountable when the educational goals or environment fall short. Eventually I learned that if I was present/involved on the campus, my boy would get better treatment because when teachers and admin know you will not go quietly and you will not let what goes on in his classroom be a mystery to you, teachers and admin step up with your child.

Just remember, teachers are like a box of chocolates too….you never know what you might get. And that’s okay as long as you are not the tearful mess that I once was. Be better than me and do more than cry. By all means, have that long, tearful cry and clear out all those emotions because we all know that’s a healthy, cathartic feeling and our emotional stability often depends on it. But, after the tears fall, don’t let it end there….move on to the next step and be vigilant with your child’s education and with their emotional well being.  Praise those who have teaching hearts and stand firm and tall against those who don’t.

Be aware.
Be involved.
Strengthen that backbone and Grizzly Up, Wonder Souls.

Get to know your teachers, my friends, and don’t let fancy educational talk or glamorous clothes sway you. I kid you not when I tell you that one educational year has the opportunity to be a year filled to brimming with goals being met and progress being made or that one year can also be 180 school days of damage inflicted that can never be undone…. and no amount of tears falling will change that. You might not understand this yet, but you are stronger than you think and you can do this because your child’s future largely depends on it.  Get to know your teachers, get to know the educational environment and then grizzly on up, Wonder Souls, and Sparkle On.