Do you ever – hold on. Just a second, kiddo, I’m talking. Ok, sorry about that. So anyway, do you ev- You have not been interested in speaking to me this ENTIRE time until now! PLEASE WAIT. *DEEP BREATH*
*opens mouth to speak* AHHH! What’s wrong?! HOLD ON!! *run* *save day* *check for blood*
Of course when I turn my back, that happens. OK SO. As I was saying:
Do you ever have one of THESE conversations?
(And you actually count this as a conversation because you are a parent now)
whereyoualmosthavetospeaklikethemicromachinesguytogetafullsentenceoutallatonce?
Clearly a dad whose kid needed something as soon as the director yelled, “action!”
Where, by the time you can utter a complete thought, you’ve forgotten what you were going to say?
It’s especially fun when the poor person on the other side of this “chat” is ALSO trying to speak.
You two end up speaking and it sounds like how an interpretive dance may look:
*speak a few phrases, look down, look across the playground, run forward while looking backward still trying to speak, dip, grab child, airplane, airplane and glllliiiiiddddeeee into the next few words*
.Fin.
A holiday weekend is fast approaching. You may be around family, friends, friends of friends, and/or that coworker (you know the one). Remember, if you need a fail-safe exit to an awkward conversation, stand next to your child and open your mouth. They are tiny fire escapes with legs.
I can recite a few fan favorites by heart as I’m sure each and every one of you can, too. Even when we throw in a few new picks, the boys always come back to their tried and true books. We have started reading 5 Minute Avengers Stories, and let me tell you, the boys love it. In five minutes, I can turn those boys into glassy-eyed book zombies. I admit to glossing over a few sentences and adlibbing to get the point across in less time, but nonetheless, they stay fully engrossed with all of the superhero antics.
Last night, one particular story about the Incredible Hulk gave me pause. In it, everyone on the outside saw a loud, angry, monster. Hulk knows that isn’t all that he is. He’s sad that people stop and stare at him when he is out and about because he looks and acts differently than others. When he does try to kindly approach some people on the street, Hulk overhears them calling him names so he walks away, angry. He smashes something, further reinforcing the claim that he is only a monster. Hulk recognizes he is misunderstood, save the Avengers. They know that yes, Hulk is loud and often can’t control his emotions, but that he also protects everyone with this uniqueness he has been gifted with, and that he has a truly loving heart. Of course, Hulk has a speech delay as evidenced by his catchphrase “Hulk smash!” so he can’t fully communicate this. I don’t want to spoil the story for you, but he saves the day, and Everyday Citizen learns that it’s okay to be different. (Insert Reading Rainbow music).
As a special needs mama, this story resonated with me and got me in the feels probably more than the author intended. It made me think of my teen with autism. Not only are we in the throes of teenagedom , but Aiden also has a speech delay and is often misunderstood. He can look shy, (and trust me, this kid is NOT shy), but this is because he gets completely lost when it comes to social interactions with people outside of his “Avengers Squad”. What can come across as a tantrum is really a meltdown because his brain is trying to process everything all at once and he is in a sensory overload. In all of this though, his heart is gold. He turns into a puddle of mushy fluff when it comes to babies. He always wants to lend a helping hand. He is kind, but like Hulk, he has a uniqueness about him that you have to accept.
Lief is my kid full of emotions. He is quick to burst into tears if things aren’t Just So (whatever the Just So Du Jour happens to be in that moment). He’s five and full of spirit. He has no shortage of words, but does fall a little short in the attention span category. He is LOUD and always has GREAT IDEAS, even if you’re in the middle of talking about something completely different. He’s quick to tell you that you are “breaking (his) heart”, but also about a new word he can read, or an amazing song and dance routine he has come up with on the spot. Like Hulk, his emotions get the best of him. Like Hulk, he is truly kind and protective of the world around him.
Who is your Hulk? Is it your child with special needs? Is it a kiddo whose square peg learning will never fit in the round hole? Is it the neighbor down the street that comes off as crotchety, but is simply lonely and needs a friend? Could it be that person you have sized up based on nothing more than assumptions, but never really got to know? In the special needs community, we are always educating and advocating for acceptance, but I challenge each of you, myself included, to do the same in the “everyday world”. Find your Hulk. Look past the big, green, monster and see someone simply Incredible.
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.
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.
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.
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.
right off the bat: that was a doozy of summer and hallelujah for school. People like to complain about public school these days, not me. I praise every underpaid, underappreciated, undervalued teacher out there. ill volunteer when you need me to, and join the pta. I will buy extra snacks and tissues, and sing your praises to everyone that will listen in exchange for 7.5hrs of silence 5 days a week. god bless you guys, for real. FOR. REAL.
The last post was pretty heavy. I posted it here, and i shared it on my personal page, as well as a mama group im in. Not because im an attention whore, but because I wanted people to recognize how important it is to make You a priority. 100% of the messages were positive. 100% said they were glad the babe was safe. Nearly 75% publicly or privately messaged me to tell me i was brave for sharing my story and admitting this “almost nightmare”.
you guys. i take issue with this. not because of the well wishes, they always make me feel warm and fuzzy. rather, because parents feel like it’s taboo to admit our faults these days. To admit our missteps and mistakes seems like admitting absolute failure and that’s just not the case.
I am not brave. I am a parent that is 2 parts confident and 1 part scared shitless most of the time. (those numbers fluctuate, btw). I am not a pinterest mom, i dont even have theme parties for my kids. A friend of mine asked about my sons birthday theme this summer, and I said, “frazzled mom”. That’s the best I had.
We are imperfect inside and out. the post was about imperfection, about a mistake. If you feel like me admitting that one thing was brave, hold on to your hats, and bust out your purple hearts, folks. listen in on a conversation i have with my friends away from the public interwebs. especially a girls night out over some beers. i have no problem saying i screwed up, or that the kids were being buttholes, or that *I* was being a butthole, or both. I admit defeat to screens a handful of times because I’m selfish and want silence.
Its not brave to make mistakes, be an imperfect parent, and admit to both: its simply admitting that we are human. With social media all around us, its hard to not to always feel like you must be “on”, but that’s crazy. Its easy to judge people while you sit behind a screen, but rise above this. We all need to start sharing our less-than-stellar parenting moments, and we all need to hop off our high horses and say, “I feel ya. Hang in there” or even, “can I help” rather than wagging our fingers and judging for the sake of judging.
So. What’s your less than stellar parenting moment of the week? Mine? I was holding my kids (2yrs) hand in the parking lot last night while he screamed “no!” I was tuning him out, because he’s 2 and hates holding hands in the parking lot. He finally yelled, “mommy heeeellllppp!” I looked down, and his pants had fallen down. He was walking down the parking lot with his shorts at his ankles while I sang Duran Duran in my head. Ahhhhh, life. Your turn!
While Ive been playing Houdini on the blog, Ive been doing a lot in Life. Fun things, awful things, stressful things, relaxing things, travel things, home things, Stuff and all of the Other Stuff Life brings about.
Today though, today was a Day. There was some business that was finally resolved after days of – well, to be frank, stress and fear. By late afternoon, i was exhausted but in that way where your brain is mush and you cant actually sleep so you do your best impression of a zombie. know the feeling? If youre a parent, you probably do.
foreshadowing foreshadowing foreshadowing. dont worry, im working up the nerve to relive this and forever preserve it on the interwebs.
So this afternoon, I went to drive my sister in law home. We barely spoke. We were both spent. I came home and flopped down on the couch. I started watching The Good Wife and mumble-chatting to my husband while i dozed off. After about 10minutes, I said, “hey, where’s Augie?” As Chase got a funny look on his face, I simultaneously shot up and said, “hes in the car!”
Before I go further, I need to say right now that hes 100% fine. But in that split second, Chase and I went running out to the car while I frantically clicked “unlock” over and over again. Car doors work until you are a hysterical parent trying to simply pull it open. Chase opens the door and there is Augie, a little warm, not even sweating, and sound asleep. I had put his seat in the third row rather than the second because we had extra people in our car for the last few days. That simple change compounded with exhaustion and i totally, simply, forgot. Chase pulled him out, I held him and held him and held him and held him until he woke up an hour later and said, “hewwo mommy!”
You guys, I cannot even let my brain go to the What If realm. I can, however, recall every time I have read an article about a parent leaving a child in a car. My heart always hurts for them, and I have tried to convince myself that I always believed parents that “simply forgot”, but in the back of my head, I still thought that sounded crazy. Who the hell does that? Well, now me. And I am EFFING LUCKY that it turned out perfectly perfect. Especially in June.
Today I was emotionally, mentally, and physically drained. I was going through the motions of Adulting today, when really, I needed a juice box and nap. Adults, but in particular parents, and I may even go further and say especially mothers are the worst about taking care of themselves because so much is always coming right at us. It’s easy to put our own selves on the back-burner when we are being a parent, partner, nurse, cook, maid, taxi driver, and so much more. It’s easy, and Ive definitely been guilty of putting myself last too many times. However, this time, my lack of self preservation could have had awful consequences.
I tell you all of this story for a few reasons: 1. Car accidents can absolutely truly really for real real realdom happen. For real. FOR. REAL. 2. Take a nap, do yoga, have a drink, go out and see friends, indulge in your hobby, spend that money guiltlessly and get yourself that thing youve been eyeing, sleep in when you can, wake up early and have extra quiet time when you can, tell people No, ask for help, just take time for you. do it.
Im writing this while I have a guiltless drink, watch The Good Wife, and smile at Augie curled up on the couch next to me watching Thomas videos as the sun sets. We could have been living a nightmare. Instead, we are having a lazy, stress-free evening. Thank god. thank thank thank god.
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.
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.
In a perfect world, I’d time Aiden’s therapies based around what parents I’m forced to sit with in waiting rooms. We started a new place a few weeks ago. On the very first day in the very first 10min, I knew that I would not like Mondays very much (we go twice a week). A mom answered her phone and very loudly started tell the person on the other line that he better get her something because it was her (say this part like you’re also a car motor revving) “mother f-ing birthday, man!” Then she complained about her mom and talked about a mutual friend of theirs who had been busted for meth. The other parent in the room glanced over at me. I noticed he had giant headphones on, and he was discreetly turning up the volume. Well played, sir. Noted.
We waited to get in here for months, so changing the day or time isn’t an option. If you were reading this, and even considering that as an easy solution, my guess is that you do not have kids with special needs. Private Therapies are our Manhattan private schools. Our community knows every therapist: where they are, where they were before, their credentials, and *everyone* will give you reviews whether you ask or not. “Oh you didn’t like Sal at ABC? Don’t leave yet, the place is AH-MAZING, but you need to ask for Bob.”, “Eh, be careful there, it’s good, but their billing is a nightmare” (<–that one is me). When it comes to your waiting room cohort, you get what you get and you don’t throw a fit, as they say.
I’ve mentally sorted waiting room parents into categories:
The Loud Braggarts – They want you to know they’ve spent ridiculous amounts of money, have the best solutions, most supportive spouse and family, and their pet unicorn makes them breakfast in bed every day.
The Loud and Chaotic – usually this involves a child barreling in while an exhausted parent follows behind trying to smile and pretend they *don’t* want to murder anyone. Typically, a shoe is missing.
The TMIs – I don’t want to know about your kids poop. I see you once a week on an uncomfortable chair. otherwise, youre a stranger.
The Whiners – aka the Doom and Glooms, Eeyores, and Debbie Downers. I promise there’s a silver lining somewhere, you guys!
The Snake Oil Believers – just sleep on your left side, eat pickles, and find a shaman – boom! “problem” solved!
The I Can Top That’s – Sports Parents know them. We know them. Everyone knows them.
The Therapy/Diet/Vitamin/Evangelists – it’s okay to love these things, but to try and sell them to me EVERY week can be much.
The Outsiders – the parent not in the chatty clique of parents that talk and talk and talk
The Silent and Sane – you wait, read your book, look at your phone, and leave. the end.
I fall in the latter 2 with a dash of I’m Silently Kind of Judging Your Nonsense and Really, I’m Just Here For My Kid. With two little brothers in-tow most times, I’m also the Please Be Quiet Okay Fine Look at the Phone mom. We do what we need to do, right?
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.
Real Life Autism 