I came in from the front porch to find E like this…guess he decided it was time to get ready for school and mom was taking too long lol. All silliness aside…he put on his shoe…by himself 😉 never seen him do that before! Now of course had to start over bc we still needed pants, socks, & SMOs on first…but great job baby bug!
It’s happening…S is close to breaking under the pressure of autism + genius + misunderstanding. For years i was the one saying it wasnt autism, for years he was the one fighting for dx…but now? It’s like wheres the magic pill, you dont DO enough, you’re NOT enough, you’re not living up to potential. I really wish id found the aspie and adult autistic community sooner, not given custody, pretty much not done anything i have under the guise of “whats best”. I know how it feels…and it sucks…and makes you feel worthless…i dont want that for my baby 😦 end rant
Ok so yesterday was a rather odd group of coincidences and I found my mind reeling, and a question i have been asking myself in the back of my mind came front and center. First i read this and I started thinking, and that thinking grew as I commented. Then mind still boggled I went in and mom had this open right at the point he talks about understanding a complex theory in a textbook at 3. THEN…she asks me to watch this and tell her what I thought. All of this together led to a train of thought I cant seem to derail.
I was homeschooled for a few years as a kid…it was a complete disaster for me (and for my mom when it came to me…my brothers fared MUCH better). Way back when, homeschooling was mostly either done by hippies or ultra conservative families. Lately, because of the ridiculousness of common core and school policies, and the high rate of bullying…there has been a shift. There is now not just homeschooling ( the word still used by the aforementioned groups) but hackschooling, unschooling, online school, and quite a few other names/options. For a long time, it wasn’t even an option to seriously think of, as E was at his dads a few days during the week. But now, we’re down to a weekend only schedule so hmmmm.
My problem is this…which is the greater/less of the two. By that I mean…do I send him to school, where it is likely he will be bullied, underestimated, and taught in ways that maybe he cannot learn, all the while fighting for services and accommodations he needs? I mean, school for S has been a nightmare…at least from my perspective…and I know of other autistics who literally have PTSD from school. Other autistics (especially nonspeaking) talk about being stuck in classrooms learning elementary or even preschool level concepts for years because they cannot express their intelligence in the “correct” ways. On the other hand, do I keep him home, allowing him to learn based on interests, at grade level, in whatever way suits him. Knowing that I know at least partially how intelligent he really is, but also knowing how terribly unorganized and non-self-disciplined I am and that I’m not the greatest of teachers? And also knowing that most likely his dad will consider me nuts, and not knowing what he might choose to do about that (even legal action). Homeschooling laws are fairly easy in our state, so that’s not much of an issue.
I’m not sure how many have heard of an awesome program called IRun4, but if you haven’t go check it out! It started with a man, who was a runner, meeting a special guy who couldn’t run, and beginning to dedicate his races to him. It grew from there, and now includes all disabilities. The athletes cheer on their buddies in their accomplishments and the buddies are their “coaches!” I heard of the program through a friend on Facebook, but for a long time was hesitant to sign E up…after all he can run now, and probably wouldn’t show any interest at all. However, they currently have over 2000 athletes enthusiastically waiting on that special person to dedicate their workouts and races to, so I decided to jump in!
I signed E up on Tues morn and Wed morning we had a match! We got paired up with an awesome family all the way in Spain! How cool is that! Ro and her 8yo son Chevaux are going to be running, working out, and playing sports just for E! I have no idea if E will show any participation, but if Ive learned anything from autistics, it’s that not showing doesnt necessarily mean not interested. So, since Ive been meaning to start having small, age level lessons anyway…I’m going to use this as part. I will read him their posts to him, show him the pictures, we will learn a little bit about Spain, and about being healthy and excercising, even different holidays (a lot of races are holiday themed), and whatever else comes up!
It may be 10 years before I know if he was interested, or bored, or knows where Arkansas and Spain are on a map…but hey, we’re gonna give it a shot!
There are soooo many runners waiting to be paired up! So, if you know ANYONE child or adult with a disability, sign up! Pass the website along! Tell your friends to tell their friends! Post on your blog and social media!
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…
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.
This is a poem that is both cute and thought provoking, written by Michael AutismSanta Miller who started a wonderful program Toys AUcross America with his autistic son. If you have never heard of it I strongly encourage you to visit the page and help him get the word out and get more toys to more autistic kids. (Used with his permission)
Different ability by Autism Santa
Is it truly a disability,
If a Giraffe can’t climb a tree?
If a Monkey cant swim,
Does it really bother him?
If a Lion can’t swing,
From a vine overhead?
Is he still the king,
Will he still get fed?
If an Elephant can’t jump,
As far as a Kangaroo?
Is he not stronger,
Than both me and you?
I do not like to call it,
I’d rather just call it.
I think I’ve been reading A Diary Of a Mom too much lately…but it really is easier than retyping it all lol. This was a comment I made on a question this morning in a Facebook group in response to a mom who was worried about her son still being nonspeaking at 3 and looking for hope.
That last part, folks, is a place it took me a while to get to…but you know what? I’m happy here in this place. I have a healthy, happy little boy who “tells” me he loves me in so many different ways every day. Words are nice…but I’d rather have this over actual spoken words said in disassociated rote memorization to get a reward. He loves me with every fiber of his being, and with his whole self…just as is his joy, pain (I’m not as big a fan of that being a whole self experience…I’m still a mom), excitement, and curiosity. It is pure and unadulterated by social rules, and expectations that most start to understand at way too early of an age.
So many of us start life with this exuberance only to have it tamped down…I know that probably even now his wings are being chipped at but I’m not going to be the one to do it. I want him to fly!