Tuesdays’s With Autism: Following the Leader

I’m back!

It’s been a whirlwind few weeks, and the winds are still whirling, but I wanted to be sure I caught this Tuesday to get back in the groove of things.

Between holidays, a new semester, my advocacy class, and Aiden’s birthday creeping up, I have been thinking a lot about his journey and how we have shaped him for adulthood. I wrote this piece for another venue, but I’ve decided to share it here. Happy New year!

When children show a knack or interest in a particular activity, parents tend to go above and beyond to help them thrive. If a child takes a liking to a soccer ball they get on Christmas, they are enrolled and on a team by spring. Say they have a penchant for drawing. Art classes abound! So why do we, as parents, hesitate to embrace the other things our kids with autism love: vacuums, desk lamps, and tape, oh my!

Your child’s passion is their strength. Use this as a map to help create meaningful short and long term goals. When we threw my son a birthday party at his favorite laundromat, we were sure our typical friends would shut us down. On the contrary, I have never seen such an inclusive community snapshot than being in the midst of washing machines and friends of all abilities. Laundry-related words have helped us kick start speech, challenging behavior, and sets our sights on a long-term goal my son has had for years: Washing Machine Fixing Guy. Recently, I was at our Capitol talking with a Senator who met with my son’s class earlier in the year to celebrate Autism Awareness Day. She told him she had a friend with an appliance repair shop and that he may be able to shadow a few days for some on-the-job training. We took his “silly obsession” as a toddler and have embraced it to the point that at nearly 14, he has an opportunity I would have never thought possible 10 years ago at diagnosis.

If your child uses a reward board or a token system, try using pictures of vacuums as you make your way to the desired reward. If you have an anxious child who enjoys the soothing glow of a desk lamp, write in a desk lamp for their desk during your next IEP meeting. A tape loving teen would be a valuable aide to the teacher always hanging up new things in their class. Heck, a LOT of clubs hang things up and down their school’s hallways! Find a club leader and explain the passion. Sure, some people will say no because let’s face it, we don’t live in an inclusive utopia. But Parents…some of them WI
LL say YES. That’s how you create change.

Every child deserves to be a thriving member of their community. One of the greatest barriers to an inclusivity is awareness. As parents, we want the world to embrace our child, but we need to remember that includes all of our child’s gifts, even the “quirky” ones. Start small and think big: you never know where you and your child’s puzzle-pieced road will go next.

Tuesday’s With Autism – Winter Break

It’s arrived, the time of year that I have a love-hate relationship with: Winter Break.

Me: No schedules! No routine! More free time!
Also me: No schedules….no routine…Oh god, more free time.

There are only so many Christmas crafts one can make and only so many sugar-filled treats one can consume. (That’s a lie, the boys could consume their weight in sugar, but I like for them to have teeth and properly working GI tracts). The weather has been unseasonably sunny right up until the schools locked their doors. Now, it’s like an angsty 90s video grey around the clock.

Still, I want to take advantage of our break and enjoy the extra time with the little monsters. Between breaking up fights, breaking down plans, and doing my best impression of a broken record, I’m also getting in some quality cuddles and adventures.

There will be a blog break through the end of the year to focus my time on the fam, and to roll out some new snazziness, but Facebook, Twitter, and Instagram will still be active (mostly FB). Stay connected and I will be write back in 2018!

 

#TuesdaysWithAutism – Big News From This Big Mouth!

This is another quick one, but that’s because #TuesdaysWithAutism was posted directly to the Facebook page, today.

Why you ask?

Because I had BIG NEWS! Wanna see?

LOOKIE

PS: My life will slow down after Christmas and awesome content will return. Until then, it’s going to be a little ragtag around these parts. Apologies!

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!

 

Tuesday’s With Autism: A Night to Shine Event

I have to post and run tonight, but I wanted to share this event with you guys as it is nationwide within the US.

Tim Tebow’s Night to Shine is a prom night event for people with special needs who are 14 and over. While the Tim Tebow Foundation has a Christian leaning and I am pretty much bunking in Camp Secular, I think this is a pretty cool event.

The event takes place for 2018 on February 9th at various locations across the country. If you check the link, you can find a location near you.

PS: volunteers are needed!

DISCLAIMER: I have no stake in this program. My son has never been and I do not know a single person that has. Because this is a nationwide event, I just want to spread the word in case you or yours are looking to get their dance on.

Friday Haha – ‘Funny’ and Other ‘F’ Words

I admit it right now.

This is a bit of a bait and switch post.

In order to soften the blow, I tried to make the title smile-worthy and I threw in a phrase perfect for Michael Scott.

This is a picture of Jim Halpert. If I ever make it big, please remind me to turn this into a plate of nachos or a cat tap dancing so that lawyers from nbc dont come after me for posting this without permission.

 

Annnnnyway.

You guys, I’ve hit a wall of un-funny. When I first got the idea to end the week on a funny note, I didn’t think about the idea long term. Coming up with something that’s going to make people that aren’t my sister laugh every seven days is harder than I thought!

No fear, I have come up with an alternative plan.

#FridayHaha is going out to pasture. The ole boy needs a good rest, a pretty view, and a handful of carrots.

#FridayFWords is the hip, new kid if by “hip new kid” you mean, “dorky neverold mom”. She shouts different F words every Friday like, #FOOD, and #FRIENDS, and #FAMILY and #FROADTRIPS (that’s road trips with an F. I just really want it to be a goal of mine to eventually travel enough that it becomes write-worthy). Friday posts will cover all of your favorite F-words occasionally still including #Funny stuff because I’m not a monster, geez.

Do you have some favorite F-words you’d like to see featured? Can you share them without your mother washing your mouth out with soap? Then let’s hear your ideas! Comment below or check out another F-word.

Tuesday’s with Autism – Glow Like Rudolph

“Why am I such a misfit?”
“I am not just a nit wit”
“Just because my nose glows”
“Why don’t I fit in”

– Ruldolph (the Metaphor) Reindeer

It’s almost December and you can bet that I am sitting here with the kids watching CBS’ annual stop-motion classic, Rudolph the Red Nosed Reindeer. You can also bet that I immediately thought of how the underlying message directly applies to those of us living with autism. (and oh, how I love me a good autism metaphor!)

Rudolph’s parents recognize that his red nose is different, but that he is still the bundle of reindeer they had always dreamed about. Rudolph’s mom gets to acceptance much fast than his father. Still, they want to protect him from a community that knows jack frost squat about red noses. Donner and….Mrs. Donner (that’s a whole other post *eye roll*) shy away from talking about his nose, and go as far as concealing his glow.

As plot lines go, Rudolph is found out, and a bunch of jerk reindeer peers tease him. This was made in 1964, so the adult reindeer  have absolutely no problem with calling him names and ostracizing Rudy. Finally, the ultimate, soul crushing moment for any young one – Santa tells Donner (Dad) that Rudolph isn’t good enough for his team.

Rudolph runs away with Hermie ( a misfit toy that also thinks differently than his fellow elves). As they are leaving their community, the narrator said something that struck me:

“The world looked a lot more complicated…than when they were snug and warm by the fire”

Isn’t that the damn truth?!

I mean, there’s always the running gag about not having a manual to parenthood, but when you’re initially thrown into autism you don’t even have the words for the missing manual! It can feel like you,  much like Hermie and Rudolph, are disconnected from your community, facing a cold unknown – but you have to forge on. Why? Because, what else are you going to do??

Hermie and Rudolph aren’t alone for very long. They meet Yukon Cornelius, the Abominable Snowman, and the misfit toys – they find people who each have gone off the beaten path. This new community helps the duo: they don’t judge, they offer support, and they offer their own perspective. They teach Rudolph and Hermie to embrace their abilities and to be proud of their differences.

By the end of the show, Rudolph and Hermie bring both communities together (inclusion), and Christmas is saved thanks to extra helping hands, Christmas  cheer, an elf with a penchant for dentistry, and a glowing red nose.

As we head into the holiday season, remember that there will be people who may think it’s better to hide your “shiny nose”.  To this I say, GLOW.

 

Tuesday’s with Autism – Community, Advocacy, and Advice, Oh My!!

It’s been a super duper busy month and posts have fallen a bit to the wayside, apologies. While there were not many blog posts, there was some good stuff over on the Instagram, Facebook, and Twitter pages (hint, hint). Now that we’ve gotten past that shameless self-promotion, let’s play ketchup!

Community

A few weeks back, I told you about Ty, the amazing community ally that we met at our local 7-Eleven. Word spread and Oklahoma’s 7-Eleven team reached out to thank us for the good news story (because let’s be honest, we NEED good news!) About a week later, Aiden received a package in the mail full of really neat 7-Eleven swag! There’s a general consensus that the Slurpee cup with the shark bite mold is the absolute coolest. So once again, thank you 7-Eleven! I cannot rave enough about your commitment to community!

 

Advocacy

A much longer post will be coming soon on this subject. For now, you have a chance to see some of the things we have been up to by searching #AidenattheCapitol on social media (again, links up there at the top, guys). Aiden is cutting his teeth at being his very own self-advocate, and we spent last week at the state Capitol talking to representatives and senators about the importance of fully funding and protecting programs that are essential for Aiden to thrive in this state. I have been accepted in a program called Partners in Policymaking, and I am learning so much about policy and advocating for people with disabilities. It is an international program available in many states across the US and a handful of other countries as well. I would HIGHLY suggest looking to see if your state offers a program and applying asap. It’s like taking the red pill and finding out about the Matrix. Minnesota offers a self-paced e-learning version that gives you *some* info, but not nearly what you would get by being fully immersed in the program. Still, check that out if nothing else. If you are a self-advocate or advocate for others, I’d love to hear what you are fighting for in your part of the world!

Advice

Oh my gosssssssssssssssssssh (<–key stuck, but I’m keeping it as I feel that exasperated about how long it’s taken me to circle back to this). A while back, a parent emailed and asked about eating challenges and whether they get better over time. I posted the question on Facebook and got some feedback from other parents. Lacey, a mama, a blogger, and my besty best friend is following along. Her little guy does not like runny textures. Instead, he gravitates to crispy or crunchy items. Rayne chimed in and said that her 10-year-old son has had the same aversions since he was two years old. She calls his diet, “the beige diet” (and I’m sure a lot of you are nodding in agreement, knowing exactly what that looks like). Tina also commented and said that her son “gets better, then reverts”. It’s like the old Paula Abdul song, “two steps forward, two steps back”.

As a parent, I watched Aiden gag and vomit at anything runny, mushy, or shaped in a circle for a few years (between 2 and 4 years old). This made things TOUGH when he had his tonsils and adenoids out. There was no rhyme or reason to it for us, but to him, these were absolutes in his life. It wasn’t just food either, I’m talking *anything*: play-doh, shampoo, glue….anything with that tactile sensation. One summer, he went to a speech camp (MDO with SLPs). I walked in to get him, and he was sitting there with some play-doh. I was gobsmacked, and no one acted like they had ever seen him be defensive of this texture. After that, it was just….better. Don’t get be wrong, he still doesn’t like yogurt and some other foods with a runny consistency, but he does eat some of them now. When he doesn’t want them, he can usually say, “no thank you”, but the occasional dry heave and/or vomit does happen. It’s hit or miss.

In short, the general consensus is “it varies by person”.

One thing you may try is picking one food to focus on. Start with just exposing it to your person. Maybe it’s on the table to the side of them, or right in front of them – do what you think they can tolerate. After a while (while = a week, a month….it varies) play a copy game and take turns touching it with your fingers. Reward this big time. After that is successful, try touching the food to your lips and have your child copy you. Next, have the food touch the tongue. After that, work on taking a bite and eventually swallowing the food. Again, it could take a week, it could take a year, but that’s one possible way to at least lessen the aversion. Sure, maybe they never eat mashed potatoes, but I know there was a time, I wished upon wishes, that we could sit at a Thanksgiving table without Aiden throwing up everywhere. So, you know, figure out your goal and go from there.

It’s Halloween and we are heading out to trick or treat here shortly. I have a ninja, Spiderman, and washing machine looking for candy this year. Can you guess which one is Aiden? Of course you can. What about you? What costumes are you and yours sporting this year? let me know!

Tuesday’s With Autism – A Good Surprise: Community Good Guy

EDIT: His name is TY, not JAY as originally posted.

I have been thinking today is Tuesday. It makes no sense because I thought yesterday was Wednesday. Maybe tomorrow I will think it’s Christmas, or better yet, Purple. Who knows. This week has been a heavy one. It’s easy to watch the horrors unfolding and worry about what kind of world our kids are growing up in. It’s scary. I had an active shooter dream a few nights ago and woke up, panicked. It’s the stuff of nightmares whether you’re awake or asleep.

There’s a wonderful Mr. Rogers quote that floats around when this all-too-often event takes place:

“When I was a boy and I would see scary things in the news, my mother would say to me, “Look for the helpers. You will always find people who are helping.”

It’s a good reminder for all of us, as parents, as humans. We have to hold on to the good when so much bad is out there. BE the good by calling your legislators, by advocating for change, by being a voice, by educating yourself and others, by voting with knowledge regarding your politicians and their stances, not just with a pencil and a shrug.

I had a surprise Good Moment last week in 7-Eleven that I wanted to share with you guys. Aiden and I had pulled in for gas and a drink.  It’s the station around the corner from our house, so we all frequent it often. That said, I’m usually there sans kids. I gas up and dash or I run in while everyone hangs in the car (don’t crucify me, doors are locked and I can see them at all times).

We walked in and I heard, “Hey there Mister Aiden, how are you today?” I turned around and didn’t see anyone but the cashier. “Do you know someone in here?” I asked A. He shrugged and got himself a drink. We approached to pay and Ty**, the cashier, looked at Aiden, “are you having a good day?” Aiden smiled and nodded.

This isn’t the first time that people have come up to strike a conversation with Aiden. Sometimes, I don’t think people realize that he will not give me context so I *really* appreciate disclaimers. I find out they have subbed in his class or helped him at an event, etc etc. Just adults being warm and friendly, which I appreciate and love. That said, I’ve done it a dozen or so times as well in my previous teacher life so I get it.

“How do you know Aiden?” I asked. Ty grinned and said, “He comes in here with Mr. Steffen quite a bit. We make it a point to know all of our extra awesome customers in case friends wander or they come in alone, distressed, things like that.” Then he looked at Aiden, “and Aiden, YOU are extra awesome, man!” Aiden smiled.

You guys, I stood there dumbfounded. I’m a cryer. I cry at EVERYTHING. There’s still a commercial I saw when Phoenix was a baby in 1999 that makes me tear up if I think about it. I cry when I’m sad, frustrated, mad. I cry when I’m laughing hysterically. I cry a LOT. So being this moved by a random act of selfless thoughtfulness….well, it’s a miracle that I didn’t breakdown at the counter and held it together until I got to the car.

And let me rewind the message and break it down a bit more. Not only is he saying such a reassuring, kind, statement, what he’s NOT saying is extra important, too.

He isn’t talking to me like Aiden isn’t there. (It happens)
He isn’t talking down to Aiden. (It happens A LOT)
He has worded this to respect Aiden (“extra awesome customers”).

I don’t know this man from Adam. He isn’t in special ed, and he isn’t a cop/firefighter who has been trained to “be on the lookout”. He’s a cashier at 7-Eleven being one of the good guys. Being one of the helpers.

I’m not going to lie, I haven’t thought much about 7-11 as a corporation, but I started looking into them and saw that they are very big proponents of social responsibility. I encourage you to take a look.  

 

Tuesday’s With Autism – Behavior Backslides

It’s true, “if you’ve seen one person with autism, you’ve seen one person with autism”, however, we are all part of the same club. We can share in victories because we KNOW how incredible it is to reach a goal, beat an expectation, defy the odds. We can all swap our own version of disappointment and outrage.  For example, when Joe Citizen sees us in a random store and decides that they know how to parent our child better than we do. Afterall, “they look fine” and/or “just need some discipline” (yeah, noted. thanks. jerk.) We can ask each other anything – none of us will be phased because, yeah, we get it.

Right now I’m in the exhausted club. I could be a raccoon for Halloween for next to nothing because I’m up half the night, have dark circles under my eyes, and feel like I’m constantly handling the garbage parts of behavior. Yes, we are in the thick of a behavior backslide. Smiley Ditty Bear has become Grouchpants Cussface. Now that he is a teenager, this can become a bit more complicated: his loud is louder, his refusal to cooperate is less let-me-just-pick-you-up-and-get-you-to-a-safe-space because #manweight, and his anxiety and sensory chaos comes out way more scary to a passerby (sometimes, even to us).

The tricky part is that so far we have not been able to sort out any rhyme or reason.
We have looked at it from a medical and behavioral point of view, but nothing screams “Ah-HA!”. Honestly, at this point, if you knocked on my door and said, “Just have him stand on his head and put mustard on his feet” I would do it. It would be loud, confusing, and difficult, but I’d do it.

Even though this straight up sucks, the suckiest suck part (cmon, I’m tired. Just lemme write lazy, tonight) is that HE hates it. In the middle of  full-on hysterical sobbing, he has cried, “I hate this!” Last night, after something set him off, he was blood-curdling screaming in his room and said, “I HAVE ANXIETY!!”

I’m admittedly not always cool in these high-pressure moments, but last night, I stayed very calm and neutral (yelling, arguing, reasoning, explaining – it doesn’t work when our kids are in Meltdown Mode.) “Hey, do you have words right now? Will you try to sign ‘yes’ or ‘no’?” Sobbing, he signed “no”. “Okay. I’m going to sit in the hallway.” I gave him a few minutes and poked my head in. “Do you want to hear me talk?” (who doesn’t!!) He signed “yes”. This was my tiny window.

“Can you touch your nose?” sooooooooob touch

“Will you clap your hands?” “sooooob clap

“Now, stand up and reach way up high” *sniff* reach

“Let’s count to five” verbal response

annnnnnnnnd he’s back.

This is, really, the best case scenario. There have been meltdowns that I have vacuumed through just so that I could make sure the house was extra clean for when DHS undoubtedly showed up to investigate the child murder screams that periodically slip past the walls. They haven’t shown up yet, and I truly thank my neighbors, grandparents of a teen with autism on one side, and a retired special ed teacher on the other, for that.

To be clear, this isn’t constant. These unpredictable emotion bubbles are just popping up much, much faster than before. I’m up for suggestions, so let’s hear them.

Try to avoid any mustard.