Today we went to the Fair. We couldn’t bring Simon, unfortunately. I’m sure he would have felt like he went to doggy heaven with all the funnel cake and animal dung.
This is Reagan
He’s just turned nine
He celebrated by going to Chuck E.Cheese’s
What you don’t know is that Reagan has autism
Autism is a spectrum disorder
Meaning Reagan is somewhere on a spectrum scale
I’ve written about Reagan before
how autism changed my life
But in a single year
Reagan has substantially grown
And made steps outside of his comfort zone…
He is still Reagan
But he has developed a sarcasm
And a taste for adventure
Unique and truly his own
Where as before
If I said it’s raining cats and dogs
Or the world is black and white
He would take it literally
Now he understands and will be quick to reply – not just repeat
Today, if you ask Reagan how he is?
he will likely say ” I’m doing ok , how are things with you?”
And then proceed to inform you all about the wonder of
And little big planet ( video games )
And how he has a passport and will be going to Africa soon .
He is open to change , inviting or not …
He is open to meeting new people
( constantly on the look out for a future wife for me – don’t ask me why )
I know in my heart whatever Reagan does and wherever life takes him
He will succeed
Because he doesn’t see the world as a dangerous place
Where dreams are unreachable
He is going to Africa at the age of nine
He is capable
Just at the age where we learn
To ” dream smaller” or ” settle”
That certain things just can’t be done
The world is expanding into a land of opportunity
Where the only walls
Are the ones he builds himself
But that’s true for any of us
The only walls holding us back
Are the ones we build ourselves
There is nothing but opportunity
We can grow
We don’t have to live a life held to our past
We can take it and learn from it
And then be open to the opportunity
Present in the now
For something completely
Like Fitzgerald said –
” The world only exists in your eyes. You can make it as big or as small as you want’
So stay passionately curious
And expand your borders
And like Reagan
Be excited and passionate about it
And why shouldn’t you be?
This is your story after all.
Jon: did I tell you what I did ? .
Me: why no , no you didn’t
Jon:well you know about how I gave my personal banking information to some random Indian guys over the phone right? .
Me : noooooo
Jon: well yeah .
The call was from Washington, D.C.
So you know it was legitimate .
Me: cause our government is filled with Indians…
Jon: well, yeah…telemarketers , man.
But anyway they were gonna need it to send my pel grant to my bank account .
But that’s not the thing …listen to this part …this is where I realized this was load of bull crap .
Me: really, you don’t say …
Jon: no really , they asked me to send them 250 dollars for a one time only processing fee!!
Do you remember when we were young?
Do you remember when the bear came up onto the back step ?
Or the mountain lion?
What about the satanist’ worshiping in the woods at night?
Mainly because I had an older brother
Who made these events more interesting
I remember he convinced me to walk across hot ashes from the fire in the back yard
Yeah,that didn’t ,that didn’t end so well…
He threw my hat onto dads ’63 ford ….
then told me I could get it down , by throwing rocks at it …for a 6 year old this was pretty hard …and I was REALLY short! …I cracked the windshield ….but he had a plan …filling our shirts with gravel…we made a pile onto the hood of the truck being closer to the truck might help my chances too…
But then dad came outside and …
Well he saw his sons throwing rocks at his favorite truck ….so yeah .
My brother panicked and I raked my arm across the hood sliding the pile of rock onto the ground . Thus ! Improving the situation greatly by scratching up the paint job .
In addition to all of this
He would tell me stories
About creatures living in the woods
Eater of children
Only coming out at night with the fog
The curly horned monster
Now the name
But when you’re 5 and 6
It’s real .
Very real .
This was my childhood .
It’s been a year
since my father passed
It feels like it was a decade ago
And yet-like it was just yesterday ..
So many things are different
Time moved so quickly
And some things ….
some things are just the same .
I’m not who I was before
I miss him
He smelled like peppermints
And his favorite food was …
Cordial Chocolate covered cherries
He really liked his naps
He thought everyone should know how to drive a stick shift
No question on that
He was just a man,my dad.
I remember him being strong
In a child’s mind he was invincible
It was hard the last two years were hard
He was so different in so many ways .
Life moves fast .
That’s what I’ve learned ….
No matter how dark it gets …
The sun still rises.
All we really know about the people around us…is what they give us.
So don’t judge someone …for what they do or did. You don’t know what their life is behind closed doors.
That’s what I’ve learned .
This -all of it- the beauty and the damned
It’s finite – it’s fragile and frail …
It’s us …it’s fleeting this is fleeting .
All you have is the time you are in
That’s it .
If it’s important to you
If it’s inside you
If it changes you
Makes you aware of the moment you’re in
Take it in .
Important words , write them down .
They should always be written down .
This is life
I know that
Everyone loses someone
I had my dad
For 23 years
That’s what we got
The rest is on me
Whatever it is
Whatever I do
I am my own ….
This is Reagan .
Autism is not a disease, it is a spectrum disorder. Meaning, Reagan is somewhere on a spectrum scale. His brain is wired completely different than any other child but it’s not broken. He sees things at face value. Black and white. If I say it’s raining cats and dogs, he expects it to be raining cats and dogs. His memory is phenomenal, if he meets you once, he remembers your name and where he met you for life. If I put a problem in front of him, he doesn’t see a problem, he finds out how it works and then see’s a solution. He may struggle with empathizing with others. Not because he doesn’t care, he just communicates, see’s things differently. With him everyone is a friend. There’s no strangers. Just potential friends.
You can’t pretend to listen to him. He knows if he has your attention or not- but then, most kids are like that.
in essence.. knowing someone with Autism is… learning to see the world from a different perspective.
Most importantly, how to communicate differently so you are understood. My brother, is a genius who cares about people and can’t fathom a person hurting another intentionally . His creativity is off the charts, like many Autistic children .
Reagan is sensitive to loud sounds and music …so is my sister Angela…but they both love music and love to dance
So I dance with them . They like my stories but hate to read …so I read to them …adding my own twist to the stories…maybe they won’t notice when they start reading themselves .
I remember when my sister was born ….she stopped breathing …and it caused brain damage resulting with epilepsy . and an inability to speak . There is no words to describe what it is to see a child suffer with Seizures …..none ….I remember a few years ago when her medicine stopped working .She wouldn’t stop seizing . We took her to the children’s hospital in Huntsville or maybe Birmingham? ..it’s all just signs and rain in my mind now. Dad didn’t come to the hospital that night, I remember him calling mom though and asking what he was supposed to do about supper. I knew in that moment the state of things at home. Thinking about Angela, that phone call and watching the weather outside – it was Tornadic ( very common to Alabama ) I felt something touch my leg …. Angela’s foot. She couldn’t calm down and she couldn’t get medication until she calmed down. I laid down beside her and held her until she fell asleep ….. what did the future hold for our family?? Dad should have been there but somehow, with it all, I was just glad I was .
I’ve seen people my age …not the age I feel …but my age, complain and say things because kids today have so many things they didn’t. They wish all the kids in the world had what they had.
well , I just don’t understand that at all . If you had so little , why would you not provide for a child .
we had very little growing up. I started buying things for the family when I was 16 .
These are the children in my life .
My father passed away .
Whatever he was , whatever he did is done .
Like that night in the hospital , I’m just glad I’m here .
And they make me better for it .
I can’t tell this story like my mom …or like a Dr. Only a brother.
But I’m glad it’s mine .