A Moment to Remember

Anyone who knows autism up close and personal knows that most thrive on routine. Our bedtime routine morphs here and there sometimes little changes I make, sometimes ones E does, but the current one goes like this:

“Its time to give grandma hugs and kisses” (this has somehow become his signal to stop whatever he’s doing, and go find grandma, then head to the room…if grandma isn’t home time for bed/nite nite usually works too)

Once on the bed he usually covers his legs with a thick pillow, sits Indian style and then somehow jumps on the bed like this, slamming his face and upper body into the pillow as he comes down. Now any casual observer would think hes paying no attention whatsoever, but he stops for a second when its his turn in the routine. Sometimes hes calmer but not often.

We read the book of the year (I get a new one every birthday usually a fairly simple book on how much I love him no matter what, he still doesn’t tolerate more than a sentence or two on a page).

We sing a song i made up for him as a baby…he sings to me first…hes recently thought he was funny and added a word and it stuck…

“Ethan loves (stops bouncing to touch my nose then put his palm on my cheek) mommy’s nose and mommy.
Loves you mommys nose and mommy
Ethan loves mommys nose and mommy
Ethan looooooooves…..mommys nose and mommy mommy mommy” (holds his hand a bit longer on my cheek)

I reverse it to be “mommy (point at myself) loves Ethan” (with little tickles on his name in the first part followed by whole body tickle at the very end).

Sometimes he guides my hands to tell me more tickles are wanted and where.

Then hugs and kisses.

Then i ask if he wants his music (one of those projector things that puts something on the ceiling and plays music) and tell him “I love you”.

Then usually i turn out the light and he bounces some more and goes to sleep

I’ve started a little kissing game with him where i count and kiss up to 5 which he loves, and he wanted to play a bunch of rounds of last night after kiss/hug part…hey who am i to complain since he took turns too, even kissing me instead of just putting his cheek to mine like usual. That was just the first part of the magic that last night held…

Yesterday I had read this post at Diary of a Mom and just on a whim, instead of just saying my usual “I love you” at the end told him “I love you forever, and ever, and ever…no matter what!”

At that moment he stopped and looked deep into my eyes, with a look of wonder on his little face, seeming to look into my soul to make sure it really was true…he held my gaze, searching, for quite a few moments….seeming to be frozen in time….at which point I asked “did you know that?” He smiled a big smile then bobbed his whole upper body once with a resounding “NYEAH!*” and lemme tell you, this mommy melted.

People think that non-verbal kids are unintelligent, that they don’t hear or understand, that they’re not “there”, and whatever other millions of misconceptions there are. Most of the time I have no clue what goes on in that little brain, probably a lot more than I give him credit for (and I give a LOT of credit). But let me tell you what, I get tiny glimpses of, (like last night) and nonspeaking autistic kids and adults around the world are saying…we ARE there, we DO listen and understand, no matter how our bodies and our lips betray that fact, treat us with respect, like you would any person our age, because our brain IS intact, and we ARE intelligent!

*nyeah (or some close form of it) is his go-to “word” it basically is an affirmative answer to a question. Very rarely accompanied with the upper body bob forward.


10 thoughts on “A Moment to Remember

  1. I love these moments, and love how there are others out there who GET how big a deal they are!
    From one Autism Household to another, thank you for sharing such a beautiful moment!

    • Thank you all for sharing it with me! I think this is where the attitude shift comes in, in that you all rejoice with me and understand the significance of it…rather than “well that’s not fair MY kid doesnt do that kinda thing” when i read others stories they give me hope for things to come, not a sense of loss for not being there yet. That sense of what all is possible and the hope that today just *might* be that day i get to tell the awesome story. And the reminder to slow down and notice the things right in front of me. Hope my rambling makes some sense lol.

      • My boys are older now (24 Aspie, 20 moderate to severe classic autism, and 16 neurotypical). Everything you said makes sense! And that is very big. You’re little guy was letting you know he KNOWS. Being non-verbal doesn’t mean you don’t communicate, it means we don’t know their language, and E let you know that HE understands you. That’s half the battle!
        I too write a blog about autism – Days of Whine and Rosé, Life in an Autism Household ( daysofwhineandrose.blogspot.ca ) . and it always amazes me how many other families out there GET it! Who cheer along with us, who share our pain, hope the same hopes.
        Keep on blogging. Everytime another mom, dad, grandparent, anyone reads a story that is similar to theirs, they feel less alone, and more a part of the autism community!
        From an old Autism Mama to a young one- Hugs!

  2. I think I’ve read a few on blogger and blogspot including yours that I want to follow and can’t for the life of me figure out how and I’m terrible if I don’t have notifications…maybe it’s just being mobile? Idk

    • Lol, mobile is NOT fun! The last comment I made to you I actually wrote 3 times because I kept logging myself out somehow lol!
      I have to add a follow via email tab I think- that’s the best way. I tried following some wordpress blogs, and if you aren’t a wordpress user, they make it challenging. Oh well, we stick together even if blogger and wordpress don’t!
      Do you have a fb page for your blog? May be easier for me to follow that way- and share of course!
      Mine is facebook.com/daysofwhineandrose
      We’ll find a way!

      • Haven’t made one for the blog bc i had all of 10 followers, half of which are just ppl adding random to network haha might be something to think about though…and I did get yours added via email. 😉

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