World Autism Day

World autism day!

We have entered upper level autism in our house: teenagerdom puberty. (Dun-dun-duhhhhhhn!!!!)

We are balancing eyerolling, complexion issues, a passion for washing machines, the want to wear basketball shorts year round, queen, gangsta rap, contemporary christian YouTube videos, svu, the movie Robots, a hate for sudden loud noises, a disdain for being told no, sassy back-talking muttered under the breath, the want for friends, the need for privacy, the refusal to sleep anywhere but his couch in the living room, slow but steady progress towards adulthood, academic frustrations, the sneaky snack monster, the shout of “Mother!” when hes annoyed that immediately makes me sing Danzig in my head even if I’m fuming, and his insistence that he gets the front seat so he controls the radio….

…we balance all of that with letting go of what we assumed about Aiden when he was a baby. We let go of the wants WE think he Should have, and enjoy this amazing kid that he is. He is such a typical teenager in many ways, and in many ways he is not, making him perfectly Aiden.

I remember being terrified of this phase, TERRIFIED, but we got here, we withstood the storm, and we have started another leg of our journey better prepared, but still curious about where our adventure will take us. With Aiden as the captain of our Autism Ship, it’s guaranteed to be something incredible.

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“I was not a kind boy”

 

“I was not a kind boy, today.”

He looked down. My heart sank.

These were the words from my five year old, three weeks into school. Kindergarten has been a struggle. I wasn’t pained to hear he had a rough day, it was the fact that once again, he was telling me what he did wrong. He has stopped talking about the fun parts of school, and has only started telling me that he was “too loud”, or had to sit out, or he hit too hard when he was playing superheroes. He apparently talks in the hallways, doesn’t stay in line, and “gets wiggly” on the carpet, and today was capped with, “and the kids laughed at me because I was in trouble again….*sigh*….and ill never have a RISE card again”.

Respect.

Integrity.

Self Disipline.

Excellence.

Cards that are handed out by the teachers when they see these character traits. He loved them in pre-k. Since school started a month ago, I know of him earning one. 

I took a deep breath and said, “you are incredibly kind. Even if you have a rough day, your heart is kind. Even if you do something not so kind, I know you will use your Brave to stand up and say sorry and try again next time.”

And it’s true. He’s my loudest, most impulsive, passionate, “spirited” of the bunch, but he’s also the kindest. He sings kittens to sleep before bed. He slows down so Little Brother can catch up, he always offers you what he’s eating even when he’s “sooooooooo starving”. He reassures his older brother with autism that everything’s going to be okay when his world is falling apart. He wants to be a doctor when he grows up even though he’s scared of going, because he wants to help people. He always reminds people about Kindness and Love, and knows that’s the most important thing. Yes, he does all these things while talking incessantly about superheroes and villains and creatures, and Scooby Doo, but he is kind. lief

Kindergarten is a time to play and learn the rules, but instead, I am watching his spirit break. I listen to him beg me to, “just be my teacher” because Aiden homeschooled for a year, and mister knows his options. When his dad asked him about school this evening, he said, “school is just ridiculous” and covered his face because he is five and tries out new, big, words in his sentences. He followed it with, “kids don’t think Im a good guy”. This is not okay.

This. Is. Not. Okay.
Although he wants to be a doctor, I imagine him having a side gig as a comedian or a magician, or being in a band that plays at local bars around town. I can see him being in theater or happily playing for a crowd in a one man band like Dick Van Dyke in Mary Poppins. He is a ham. He is always laughing and tries to get people to join in on the fun.

But school has made him sad. Something is wrong.

We are in the process of talking with the teacher, and have now involved the principal because we are not going to idly sit by and watch this happen. When we talk to them I can hear how we sound. We sound like Those Parents. The ones that think their kid is a Perfect Genius. The ones that point the finger at the teacher, and tsk tsk tsk until accommodations are made for their Precious. I can almost hear the eye rolls when I walk away or hang up the phone or hit “send”. I can smell the wine runneth over thine teachers cup. I KNOW how we sound.

library
leader during storytime at the library

Except, heres the thing: we KNOW Lief is a wiggly little loud-mouthed crime fighting superhero kid. We KNOW he needs to work on using an inside voice and listening ears. We get it. We are asking for positive behavior supports because everyone, kids and adults alike, benefit with positive reinforcement. Before my luxurious career change as a Stay At Home Mom/Wife/Maid/Taxi/Chef/Secretary etc etc, I taught ABA therapy to young children on the autism spectrum. I literally got paid to positively reinforce behavior. For years, I always found loose goldfish or m&ms in my laundry because I lived and breathed reinforcers. Im having to find my balance between wearing my Mom Hat, and my I Know What Im Talking About hat.  I imagine it’s like a doctor with a sick kid. You have to be polite and listen to the other guy, but when you know somethings wrong, you know.

Luckily, we are special ed parents. We are well versed in being advocates. We know how to be the voice of our kids when they need one. We know the chain of command,  the people at all levels in the district, and we understand that it’s okay to be a different kind of thinker and learner!  I have to remind myself this when I want to just be quiet and compliant and not rough up the waters, after all, we will be at this school for years to come. With every thought of, “god, I bet we sound so needy”, I have to remember, Lief *is* needy because he is five. With every curt smile we are met with, I remember my son deserves a smile. Give me the curtness, as long as he is given a chance to RISE UP, as the school slogan goes.

Do not be afraid to use your voice for your child. Whether they have a disability or special needs or special accommodations or they are comfortably “typical”. Don’t NOT rough up the waters for your kid. You are their VOICE. You feel intimidated? How do you think they feel? Handle yourself with dignity and grace because they are watching, they are sponges. If we are going to encourage kids to stand up for what they believe in, we must also stand up alongside them or even for them. Even when it makes us uncomfortable and wiggly.

 

 

Would I Be? Perspective.

If Aiden didnt have autism, would I be concerned that he didnt have a lot of friends? probably. Thats mostly because I always had friends, myself. I was a chameleon and could buddy up with any clique, growing up.

If Aiden didnt have autism, would I be concerned that he seemed angsty? no, Id chalk it up to 12.

If Aiden didnt have autism, would I be concerned that he wanted to hang around me allllll of the time? no, Id be elated (but also aware that we needed some space so he didnt turn into Norman Bates).

If Aiden didnt have autism, would i *really* give a lot of thought to his want to sleep on the couch rather than his room? No, Phoenix once wanted to sleep in the laundry room when he was nearing 12, himself.

If Aiden didnt have autism, would I worry at night whether or not he will ever be kissed, have an intimate relationship, get married, love? At 12?! NO!!

If Aiden didnt have autism, would I worry about him living with us as an adult? Not as much. As Chase has pointed out, I always tell Phoenix that he shouldnt (and doesnt) need to rush out and move away right after graduation.

Sometimes, we, as parents, have to be careful not to overthink What is Typical vs What is Autism. Don’t get me wrong, throwing autism into the mix is a definite game changer, but I try to consciously check myself when I start spiraling (and I do spiral. a lot.).

Chase has social anxiety, just like Aiden.

I *loathe* Walmart because the whole experience makes me a crazy, tense wreck sometimes more so than Aiden.

Phoenix doesn’t like large crowds just like Aiden.

Lief can get overloaded at the drop of a hat, just like Aiden.

August wants to be right by my side, just like Aiden.

None of us have autism like Aiden.

You know what Aiden does that I can’t say we all do?

He loves 100%. no judgement, all love.

He gives 100%, 100% of the time.

He tries harder than many others, even through tears and frustration. day in. day out.

He openly will convey his feelings, because he does not care if you are offended at his frustration with you.

He will battle cry scream in anger the way you secretly yearn to in an irritating moment.

He forgives and forgets.

He has “weird” passions unapologetically.

I have so many posts sitting in my head that are not about autism, because i promise, not all of them will be, but I cant stop thinking about this. It’s perspective. It’s angling askew just a little bit. During all of those hard days, I try to remember this, and reassure my Self that it’s all going to be okay. No matter what, we will all be okay.

Life and the Laundromat

Dinosaur themed parties are weird. Who in their right mind wants a party based on a lot of dead animals, right? Pirate parties are also ridiculous. Why celebrate a child’s birthday surrounded by reminders of the barbaric thieves who used to rule the sea? Don’t get me started on princess parties. I’ve never been a frilly girl and I have three boys so the whole idea is beyond me. This, of course, is the mantra I chanted as we planned my son’s 9th birthday…at the Laundromat.

Aiden has autism, and for as long as I can remember, he has been in love with washing machines. Dryers are pretty good, but the washing machines are the ones most near and dear to his heart. Even before I ever heard the word ‘autism’, I knew to keep the laundry room door shut because once Aiden started walking he would go straight to the washer and try to climb in.

Washing machines played a role in Aiden’s speech development. He only had a few words at two, but at three we saw a language burst. He would walk around and say, “washerwasherwasherwasher”. Say it fast, just like that. Can you hear it through the ears of a child with autism? If you say it long enough, you will hear the sound of the motor whirring and the steady beat of laundry spinning. This was the gateway to other laundry themed words and eventually, non-laundry themed words.

Aiden started collecting Sunday circulars from any appliance store that had pictures of washers. We cut out the pictures and made him a little book that he could look through when he got anxious or the world became too big. As he got older, he started watching washers “clonk” on YouTube (AidenSpeak for when the washer is spinning and the load becomes uneven).  He worked for trips to appliance stores. We would spend hours walking through Lowes and staring at washing machines when he had a good day. Aiden would inspect each and every one diligently turning dials, opening and shutting doors, comparing and contrasting the top loaders from the front loaders. The first time he saw the bright red front loader display, you would have thought he found the pot of gold at the end of the rainbow. He was complete.

I did not think that moment could be topped until one day when I found myself with a broken washing machine and not enough money for repairs. I loaded up the kids and headed to the Laundromat for the first time. It was by far the lousiest one I had ever been to. It was musty, had cracked tiles, there was no TV, and a few machines were out of order. Aiden threw his arms up in the air and said, “I love this place! I love all of the washers!!!” He spent the entire time inspecting each one, listening to the motors, laughing, helping load and unload the laundry and really looked to be in his element. Until that moment, it had not ever crossed my mind to take him to one. Not once. It was one of my greatest “Duh!” moments of momdom. From then on, working washing machine or not, we made special trips to Laundromats all over town.

This year has been a struggle for Aiden. I think he has become much more aware of the fact that he is different from the other kids. He skips words when he talks, school work is harder for him than his peers, and playing takes a lot of effort. Aiden’s autism makes overgrown grass look like an endless jungle, and the soft buzz of a dull motor or overhead light most of us don’t hear sound like a drill against his ear. Anxiety is constantly trying to be managed and it usually resorts into tears and hugs away from “the friends” he so desperately wants to interact with – it’s just so hard! The little boy who has never known a stranger and always has a hug for an upset classmate suddenly started becoming withdrawn and moody. He was giving up on this whole “social interaction” gig.

So when Aiden said he didn’t want a birthday party, my mama-heart sank and my mama-brain went into full distress mode. How could I fix this for him? How could I make him comfortable again? The Laundromat! My husband talked to the manager at a local Laundromat and after many reassurances that no-we-are-not-crazy, she gladly agreed to let us have a party in there. There was a lounge area, video games, vending machines, a tv, and of course, washers & dryers.

I worried what our friends and family would think when they got a birthday invitation to a Laundromat party. I prefaced it with, “Aiden is constantly pushed to adhere to “our rules”, you know, those of us who don’t have autism. For his birthday, we’re inviting you guys to jump feet first into his.” The reaction was amazing.

About 30 people showed up for the party: family members, family friends, kids with autism, kids without autism; they all had a blast. When Aiden walked in, his whole Self lit up. He started dancing and singing. Every time someone else would walk in, he didn’t necessarily go say hi, but he would grin and say, “More friends!” He was showered with gifts ranging from toys to a book on Laundromats, to laundry detergent and laundry kits, to quarters for future Laundromat adventures.  For that hour and a half, he didn’t have to worry about anything. We followed his lead, and saw the beauty in his passion. In his world.

Aiden has taught me so much about life, patience, and washing machines. He is Exactly Aiden, and the hard part for him is being Aiden plus Your Comfort Zone. He is sincere in life the way many strive for, but never get to because of imposed norms. While many people try to enjoy being someone or something that they’re not, he enjoys being exactly himself. I believe he taught everyone a little something at the Laundromat party. “Different” is in the eye of the beholder. It doesn’t hurt to stop and see the world from another perspective every now and again.

two piece walk stories from me to you

today we participated in the Piece Walk for Autism. 26 people signed up to be on our team. All of us did the walk, and some of us did the 5k, myself included. it was my first. im a proudy-pants.I started doing this five years ago, when mister was 3 and newly diagnosed. Today, was special.

AIDEN 

Aiden is my middle. He was diagnosed in 2007 with PDD-NOS and eventually, autism. Back then, Aiden didnt speak very much at all. What he did say was in “aidenese”. He didnt say “mama” until he was 2 years and 4 months old. He had been in the car since Minneapolis and this happened in Kansas. I honest-to-god think that it was out of sheer boredom that he finally said it. he used to have an in-home provider come in and do OT with him while he rolled around on our wooden floors with his belly on a skateboard in only his undies bc he was a sensory seeking machine. over time, we have seen this kid become a fast-talking, sometimes smart-ass, amazingly independent, reading, beginning to write, talking about dreams, having friends kid. his speech is delayed, but when i get frustrated with progress, i remind myself just how much progress we have under our belt.

Today, as we walked up to our group, he held my hand and said, “lets run to the fire hydrant.” check. “will aunt crystal be there?” yes. “look at the tall building” uh-huh it’s so cool! a simple conversation that i never knew for certain i would have. While I was on the last leg of my 5k, my husband said he stood there, watching for me and yelling, “go mama go!” “go mama go!”. When I ran through the line, he ran up and hugged me, then handed me my gatorade he had been helping himself to. He smiled with his dyed upper lip and said, “you did it, Mama!”

today, he was my cheerleader.

TUCKER story told with permission of his awesome mama

I met Tucker in August 2009. I had just taken a job as an ABA instructional assistant and Tucker was the kiddo I was assigned. He had just turned 2 and was still non-verbal, save a word he learned around the same time, “Purple”. It’s what he called his mama. The first two weeks were spent with Tucker kicking me in the shins, really hating my guts, and crying when he saw me. Who did I think I was showing up at his school and pushing boundaries on his entire freakin existence. I was a major jerk. Still, slowly, slowly, said the snail. It didnt take long for the kicking to slowly fade, the tears to stop, and for him to be happy to see me. We started doing a verbal imitation program that resulted in him imitating sounds, words, and he began talking non-stop….i dont think he’s stopped since. He aged out of our program in August 2011. For two years we were thick as thieves, and have since become fantastic family friends.

This kid has grown up with a mama who runs in anything and everything. His second room was a jogging stroller, and now, he runs, too. Today, he ran with us in the 5k. As my friend and I turned around at the halfway point, we came upon Tucker and his parents. He turned around and said, “I found My Randa!” this is me. he calls me this because my name is miranda and when he was beginning to speak his mother said, “lets go see miranda”. he, replied, “no! it’s MY Randa!” So this is my super bad-ass nickname that I refuse for him to grow out of, ever.

Tucker would not leave my side. The kid is a seasoned runner at 4 and I was huffing and puffing my way through my first. He walked by me at one point and said, “i fink we can run dis, Randa. C’MON!” he grabbed my hand and coaxed me to go. So we’d run for a bit and then I’d stop and walk and tell him to run ahead with his parents. He said, “no Randa, Im running wif you! Cmon!” At this point his mom, dad, and our mutual friend are cracking up and his mama said, “who taught this kid to talk?!”. and it was me. I did it. I pushed him for two years and for two years he worked his little self as hard as he could for some Yums [M&Ms], high fives, wiggles, cars, easter eggs with surprises in them, and all sorts of crazy stuff. I EXPECTED him to work hard, and now, he expected me to do the same.

I said, “tuck, lets walk up this hill, then run all the way down to the light. Around the corner is the finish line. you wanna do this together?” He said, “YES! High five, Randa. We are Champ-I-Ones [champions]!!” So we did this thing. As we rounded the corner to the finish line, I started walking and told him to go ahead with his daddy. I let him get in front of me bc a) I didnt want to cross the line sobbing as I had this intense emotional moment and b) because he deserved to cross it first.

And as I crossed over, I saw him hugging his mama and heard my own little guy yelling, “you did it, Mama!”

Today, they pushed me.