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.

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.

On the Bright Side

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I get that not everyone sees autism as a blessing.
I don’t agree necessarily but I get it and I believe everyone feels what they feel based on their own experience.  For me, I can only speak for our journey.  I do believe autism has been a blessing and a gift.

What concerns me most is that if you go about your journey, seeing autism as a negative and not a blessing, you not only lessen the grace, value and blessing of the autistic individual but, while you are bundled up tight in your blanket of pity, deep inside that fog of woe-is-me, you might just miss the good stuff.

I think we can agree…the sparkles don’t always announce themselves in neon.

Sometimes they quietly tip toe in and hope someone is looking on the bright side.

If you expect and see the worst, I’m pretty darn sure you’ll find it..BUT…if you look on the bright side you just might find the sparkles will surprise you.

Which side are you looking on?

Sparkle On, my friends.

If Your Autism Looks Different…..

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Here’s something to think about.
Give it some thought.

If you don’t see autism the way I do, that’s okay.
If you disagree with my view of autism and this journey… that’s great.
If your journey is completely different than ours, be thankful.

My boy was diagnosed in the darker ages of autism and, thirteen years later, I sure hope things have changed. I hope you see things differently than me…because I hope to heck a LOT of things have changed. I’d be heartbroken if we were still walking the same road and stepping into the same prints.

If things have changed and you are traveling a path that looks better and you’re experiencing the journey differently than me and my boy…be thankful. And, in your moments of being thankful, just remember it’s kids like my boy who came before your child who cut the path you’re on. Remember the children who were permanently changed and scarred by an ABA that may look different than yours.  Remember kids like mine who went before you, who fought the battles, and who demanded their place in a regular education setting when districts refused. My son, and many students like him, battled for their right to be seen as equals in a time when districts still wanted to warehouse kids with differences in isolated SPED classes. If you have a different experience and you think this sounds like crazy talk, thank the older children who stood on the forefront of the battle and cleared the way for the  younger kiddos like yours who came after them.

So if our journey looks different than yours and you disagree with my view, be thankful for that, my friends, be oh so very thankful.

Sparkle ON, Wonder Souls.

Why ABA Is Not My Friend

 

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The feet of my family. Every single toe.

 

Let me see if I can say this right. I’ve written it down in my own head a few times already (and it keeps getting jumbled) but I’m going to try to sort it out here.

My boy is 15.
We were diagnosed in the early days of autism when not much was known or helpful.
There was no Facebook,
no support groups,
no Wonder Souls.
There was just me, myself and I determining the direction of our sails and we were all three winging it.

With that said, my thoughts on ABA might not make sense to some of you but hang with me through the end.  My unfriending of ABA has not happened because I dislike the tougher moments.  That’s not it at all.

I know my son can’t always be happy and, just like any other child, there will be tough moments and disappointments.

I know there are moments when my boy is going to struggle.

I don’t expect his life to always be sunshine and roses.

There will be uncomfortable moments while he is learning when he will rail against me (and he has) because what he wants is the easy path and that sweet and easy path isn’t always what teaches us the lessons we need to learn.  Honestly, there have been MANY moments when I have watched my boy scream and cry and thrown down a fit because what he demanded was not what I felt was best for him. It’s not pretty but those are the tough choices parents have to make and giving in rarely teaches us the lessons we need to learn  and does not make for a life lived with responsibility.

What I promised my boy early on, and I only speak for us and our journey, is that I will be the one there for him. Especially in his very delicate early years, if there were rough moments when he had to be pushed or stopped or firmly reasoned with, I was going to be the one there for him.  I can’t imagine a stranger being the one to push my child and for my child to be in a crisis moment with a stranger as his go to person.

I have never been able to fathom what that looks like or, even worse, what that feels like for a child already struggling.

I’m not sure that makes any sense but, for me, if there are tough lessons that need to be taught, I want it to be me who is looking back at him. I want him supported by the person he trusts most….not a paid service provider. If he has to be in a crisis moment, let it be his mom’s face he sees looking back at him. If there is going to be a struggle, his struggle will be with me.

ABA did not feel like a nurturing fit for us and simply had no place in our life. He and I did it all together…tough moments and all. If anyone was going to push my boy or change our expectations, it was going to be ME because I felt he not only needed it but he also deserved that.

As always, that’s our story and I can’t speak for anyone but us.
That’s what we lived.
That’s how I saw autism in our early days and I never gave any crisis moments away to strangers because, for me, my boy deserved to see his mother in those moments so that he would always know that where there is great love, there is also great responsibility.

Sparkle On, my friends.