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.
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.
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.
There are so many things you won’t know when your kiddo is first diagnosed with autism.
There are so many things that will soon come right along to turn your world upside down.
There are so many things that will do their best to confuse you and crush you and end the dreams you held for your kiddos before they were diagnosed.
There are so many things that will turn your life into a gray zone that seems to hardly ever make sense.
There are so many things and people and words that will make you break into a puddle of tears for no-reason-at-all.
There are just so-many-things.
I felt that way when my boy was diagnosed in 2001. Oh how I felt that way and oh how that puddle of tears seemed to follow me wherever I went. I didn’t know how to do autism. I didn’t know if I was doing everything I could to help my boy. I didn’t even know IF I could help my boy. I mean…AUTISM. I thought it was bigger than me. I thought it was bigger than my little boy. I thought back then, it was bigger than both of us. In those days of our early diagnosis, my boy was the classical case of autism lacking words and eye contact and interaction. He was sweet. He was cute. He was even cuddly but he was also all of those classic signs that screamed autism loudly into our lives. He was a Thomas the Tank Engine genius in a world dominated by Thomas, Percy, James, Diesel, Sir Topham Hat, Annie and Clarabel.
There were so many things. So many things they said he could not do and so many things he would not be because…A-U-T-I-S-M. And, let’s be honest, it was the experts who were making predictions about my boy so who was I to question them? I was nothing more than a tired mom….so I crumbled and I cried and I fell apart at every turn because that’s how I rolled in those early, post-diagnosis years. Until that one day when the person my boy was becoming ran counter to who they said he could be and, on that one day, I decided I’d never again put all my eggs/hopes/beliefs/dreams into any single basket the experts gave me. I decided right then to let my boy decide who he was going to be.
And that is the one day I stood up straight, strengthen my back bone and watched as our spectrum journey really began one day at a time, one step at a time, sometimes rolling fast and sometimes at a snail’s pace, and always supporting my boy’s progress.
So you wonderful Wonder Souls might be wondering what any of this has to do with the Spanish paper that’s sitting at the top of this page. Today my boy is fifteen and I found this in the Spectrum Kiddo’s room on Friday. It was folded up with the words on the inside sitting on his floor and, on a lark and thinking it was trash, I opened it up. And then my jaw fell open because…GOBSMACKED.
There are just so many things that I did not expect.
There are just so many ways autism has opened my eyes.
There are just so many ways he leaves me gobsmacked more times than I’d like to admit.
For a boy who was not supposed to make it out of Special Ed classes, for a boy who had a severe speech delay and who still is working on mastering conversational English, for a boy who one teacher recommended this year should have a one on one aide…well, just look at THIS. SPANISH. My boy, just like any other kiddo in his class, doing his homework in Spanish.
Simple, right? It’s just Spanish homework, silly girl.
To the rest of the world..sure.
For us..it’s simple and complex and mystical and gobsmacking because he is so much more than the plethora of “theys” said he could or would or should be when their abysmal evaluation listed all the pieces that would never be part of my boy’s life and yet, despite the experts and their in-stone predictions, here we are.
He is already so much more than that limited view of life they predicted would be his goal. He is so just so much more…on every level.
My boy is so much more than anyone could have ever expected him or projected him to be. And while I understand that evaluations are important in their own right to gauge where a child’s growth currently stands…don’t let anyone hamper your vision of your child. Don’t ever stop seeing your kiddo as the whole and brilliant child that they are because different is not less.
Always raise those expectations and goals.
And just when you may be falling into that puddle of tears, remember….SPANISH…because Spanish homework papers don’t lie. It’s right there…in brown and white.
Sparkle On, my friends.
This trip we took to Yosemite was amazing and beautiful and stunning… not only because Yosemite is a series of natural wonders but, honestly, because my boy, once again, left me gobsmacked.
As you might recall….
My boy at three did not speak.
My boy at three was expected to have significant delays and his outlook was not going to be rosy according to his medical eval.
My boy at four was labeled difficult and impossible and defiant by the psych at the elementary school who was trying to evaluate him.
My boy at seven was offered a spot BACK in SPED because he was not easy or simple or perfect.
My boy, in those elementary years, rarely had a smiley face day.
My boy at eight screamed for two hours under a desk while the class was evacuated and I was called because the principal and teacher could not resolve the issue (that’s a whole other post.).
My boy at eleven was not expected to remain independent as he transitioned to middle school.
I promise you, this journey has not been simple or easy. This journey has not been filled with a line of people waiting to support or embrace us. It has been a fight and a struggle from day one to raise expectations and goals so that my boy could grow into the man he has the capabilities to be…if others would open their eyes.
He is different NOT less.
Today he is 15 and, in Yosemite, do you know how much he needed my assistance? NONE.
- It was the first night we’ve ever spent in a hotel where my boy simply WENT TO SLEEP. No drama, no ultra-awakeness, no agitation.
- In the very cold weather, he explored…no complaints, no tantrums. Just a boy in the woods.
- When the chili on his chili dog was not mine AND extra spicy, he never once complained.
- And, in the morning at the very fancy Ahwahnee, we sat down in the fancypants dining room for breakfast…a buffet. A b-u-f-f-e-t. And when my boy said he wanted to get more pancakes, I had this gut reaction moment when I was going to get up to go with him…but I stopped myself..and I held my breath a bit…and I let my son go like any other 15 year old boy.
And you know what?
Along with all the other people, in the line going the right direction, my boy dealt with life in the buffet line ALONE…with no bumps or stumbles or corrections from the public.
Just my boy…being the man he is becoming.
He is needing me less and less and although those apron strings are hard to untie, it’s very, very good to see him becoming this man I wasn’t sure he’d ever have the capabilities to be…but he does and he is and I am darn proud.
Wonder Souls…don’t ever forget…Who they are at two and three and four and seven ISN’T who they’ll be at thirteen and fifteen. This journey is a process…just keep teaching and supporting and loving.
Sparkle On, my friends.
I am hesitant to confine my son to labels.
Yes, labels do serve a purpose with insurance, therapies and school districts but they also have this pesky way of defining and confining based on inaccurate definitions and beliefs in a world that simply refuses to see beyond the letters of a word they don’t understand.
Autism is a big word. Just six letters but every single one of those six letters seems to be weighted down with inaccuracies and apologies by those who fail to see it fully. I wish others could see more than just the letters of the word. I wish they could see just how deeply I mean it when I say different is not less and autism is brilliant if you let it be.
Autism is so often a term spoken with great prejudice by people who keep perpetuating those old and tired stereotypes that inevitably try to confine my boy into a world of can’ts and won’ts while they fail to see the brilliance and sparkle that fills his spectrum.
I wish the world could take a large step back and see the brilliance in those letters.
I wish, for just one moment, the world could see and feel autism through my eyes because, if they did…if they saw autism through my eyes, I would never see another apologetic set of eyes looking back at me.
Autism is brilliant, my friends. Simply brilliant.
Not always easy.
Not always simple
But always brilliant. Always, always, always brilliant.
Sparkle On, my friends.