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!

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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

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.