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.
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.
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.