As I start this ritual of writing a little after 9 pm this evening, I have yet to eat dinner, or even shower today...Michael has been out of town, and I had no Me time and no running. I feel like I might burst. I will be OK by the time I hit, "Publish", but I wanted to let you know the truth. Monday through Friday from 8:30am until 5:30 pm, except for Speech Therapy and Thursday morning preschool I must be at the house all day so that Greyson can have 25 hours of home based therapy. I focus on the fact that this is a long term investment and worth every second of the stir-crazy suffocation I feel at times . I am actually lucky that I have an incredible team of Teachers who genuinely care about the well being of my son and want to see him succeed in this World like I do. Teachers everywhere- you make a difference in the World. You should be thanked daily- and not just on Teacher Appreciation Week.
I like to be involved and understand each and every skill Greyson is learning, so I am often busy with him. I am impressed with how hard he works and I always remember that this is much harder on him. I see friends on Facebook having play dates or adventures, and it hurts. It's been 7 months and I forget what it's like out there. I wish my family lived closer so they could help me out on hard days like today. I miss being a regular old girl who goes grocery shopping, runs errands, goes out for coffee and comes and goes as she pleases.
I know, it is worth every second, oh friend, I know....and I know it will go by so fast and when he goes to preschool next year I will be so sad that he isn't home with me... and I am about to look over the pictures I took today and this sadness will be washed away.
The more I watch the evolution of Greyson, the more I am subtly understanding little pieces of his world. The more I witness him be and watch him learn- the more I realize how much we don't know about him......science...man...experts...Me...teachers... physicians.... I can't explain how disconcerting it is to know that I know more about autism than my Pediatrician. Not only can they not fix him-they don't even know what to say to me. It's so odd, this crazy epidemic...It's like this strange invasion of the brain snatchers, and no one knows why. I wonder if Greyson faded away slowly, or if he snapped like a rubber band all at once. One minute he was bright-eyed and interactive...and the next one he was gone. The Dr. that diagnosed Grey said it is pitiful how little we know about the brain...I agree.
I am realizing that we haven't fully discovered how to teach Greyson. Luckily ABA and Speech helps us bridge the gap, but there is just so much that doesn't come naturally for him that it leads me to believe that we still need to keep trying to find the magical key to unlock his mind. This Typical World is a foreign country to Grey. He struggles. When he struggles, I hurt. Every Spectrum child is different, but I think Greyson's particular World of Autism is a nice and beautiful place --and that beings me a sense of calm. I think most of the time he is content, even happy, Except for being frustrated with his inability to communicate- or maybe it is our inability to understand --he thrives.Sometimes Greyson stares into the distance and I know he is seeing something- and I know it is something fantastical... He will jump up and down, wide grin, eyes ablazed with life- it's as if he has found a portal into another place. Sometimes I go and I stand right by him, and I do what he does, I will look in the same direction, I will jump up and down and I pretend like I see it too... And even though many Spectrum Kids typically don't care to share joy with others (Mom-look what I drew....or, Look there's a plane!) his face lights up and for just a second- he is in the present with me- or maybe I am there with him and he is overflowing with happy because I get him.
This is his Bubble and Really big truck reaction. I saw this picture and sad=gone.
I think that's all any of us want. To connect with others... To understand them...to be understood. To have someone say, "I believe in you." To find the same things mouth-wide-open amazing. Accepted for exactly who we are... Loved.
I think we are all so much more alike than we know.
Oh friend, sometimes I want to drink the Kool Aid. I want to go to there- to Autism World. I want a passport to visit. Maybe many Spectrum kids don't share joy- or point out things- because the things we find interesting aren't interesting in Spectrumville...and the things that are interesting there- Typical people don't have the ability to see. My boy feels so complex at times, but more often lately, I am getting him and realizing the simple things he needs to feel balanced. Realizing he has a deep need to feel. He needs strong hugs and deep pressure massage to feel balanced. In Spectrumville everyone flaps their hands when they are happy and no one makes eye contact. They all chew gum, ride horses, love water and bubbles.
"Visual Stimming" (Greyson will look at an object very closely- and he will slowly move it down his face) is perfectly acceptable in Spectrumville. It's not fully known why many Spectrum kids "stim" but it's thought to release tension or stress. Typical adults "stim" but in Typical people ways- like tapping a pen or twirling your hair.
Every restaurant is Gluten, Casein and Soy Free. People yell out crazy little words or noises and everyone understands what it means there. In Spectrumville there is no need to understand "Opposites" (like big-little).
Or "cause and effect", or "prepositions" (Like "on top", "under", "inside") and that's why almost all Spectrum kids have to be specifically taught those things.
I'm proud to say that Greyson can now say his name- "Grey". He doesn't get that it's his "label" or that we all have one. But he does know that the person he was painstakingly taught to label Mom, says the words- "What's your name?" And then he must say the word, "Grey" to make her leave him alone; and so it clicked.
I am almost done reading The 5 Love Languages book and I am realizing it applies to more than just my marriage. I know that Greyson doesn't communicate in my language..He doesn't speak in, "I love you", or make frequent eye contact, he doesn't always notice when I walk in the room or come home from being out. "Words of Affirmation" is my primary love language...communication...connection... Things that aren't common in Spectrumville.....But I have to always believe he loves me, and I am trying to learn how he expresses love. It's funny- Jack the dog can't tell me, "I love you"- yet I realize he loves me and needs me...why? I guess because his tail wags and there is a sparkle in his eye...he likes to sit by me...and so I look for signs of Greyson's tail wagging daily...and under those types of new guidelines, I am seeing his love.
We did some of the 3:30-5:30 Therapy session at the local park since Mommy was going stir-crazy in the house.
I didn't realize it was this hot out!
We ended the evening tonight cooling off by the pool.
Sometimes I hear from you- and you say, I know I don't have a kid on the Spectrum- almost apologetically- BUT, I have a kid with ADD or sensory issues, or cancer, or a genetic disorder - or just a plain old kid- and I can relate. I never ever get offended when you tell me that... I never think- you don't understand me because my story is worse than your story... There is no struggle scale in my mind. Autism doesn't rank better or worse than whatever struggle you are going through.
Guess what...I understand you...and it sure sounds like you understand me...and that makes me happy. You may not have a Specturm kid- but you understand love...you understand wanting the best for your bitties...and for your own life. You understand love and emotions and wanting to be enough for everyone you love. You understand doing what ever the hell it takes to help your child.
And I understand you, and I know you don't need to be the parent of a kid on the Spectrum to wear your heart out loud.