Family: Holidays Vs. Special Needs Families

It’s the first #FridayFWords, and it synced up PERFECTLY with a piece I wrote for Oklahoma City Mom’s Blog that was posted this morning.

Now listen, let’s be honest with each other:

I have to post a little teaser and then lead you to the article via a link. Why? Because I’m contractually obligated to, that’s why! I have to trust you will follow the link to read more and man, it’s hard to get people to do that many times in bloggy world. So here I say, TRUST ME. It’s funny, it’s true, and most of all, you can pass it on to your family before that big get together that’s coming up. Here we go:

Dear Grandparents, Aunts & Uncles, and The Guy Your Cousin Always Has Hanging Around But You’re Not Sure What the Deal Is:

Hi.

It’s me. Your family member with a child that has additional needs. I thought we could have a heart to heart before we drown ourselves in Christmas Cheer and ham.

Every year during the holiday season, I watch two versions of social media unfold within my special needs community. There are the public family pictures with smiles and endearing anecdotes, and then there are the behind the scenes messages in our private groups. Whatever the story and scenario, it ends with mom after mom feeling hurt and isolated by the very people who are supposed to be loving and supporting her unconditionally:  The Family.

Follow the link for the rest of the article. It includes a pretty funny picture caption. What are you waiting for?! HAPPY FRIDAY!

 

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Infant Loss and Awareness Month

October is Infant Loss and Awareness Month. I wrote a very personal piece for Oklahoma City Mom’s Blog that I have decided to share here. This may be an ICYMI piece for those that follow the Facebook page or it may be the first time you’ve read this. I’ll get back to your regularly scheduled program this week, pinkies.

I Didn’t Lose the Baby, but I Lost Alongside You

I screamed with shocked excitement when you came to town and announced you were pregnant. You secretly recorded us under the guise of a group photo to save our reactions for years to come. In the clip, I said, “No you’re not!” Words that would haunt me.I spent your first trimester commiserating with you over morning (and afternoon and night) sickness, and in your second trimester, you announced you were going to have a girl. The first in our family for over 20 years! I was stunned! You called a few weeks later after a second sonogram. “Gotcha, he’s a boy!” Once again, I was surprised at your news.

We realized that your boys would have the same age gap as my younger two. You asked me how hard it was and I said READ MORE HERE

Friday HaHa: The Art of the Sentence

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?

If you had a TV in the 80s, you probably remember this guy.
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.

Happy Haha!

Who’s Your Hulk?

Bedtime stories often are the same books over.

and over.

and over.

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.

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.

“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.

 

 

imPERFECTtions

 

Im baaaaaccccccckkkk.

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!