Author Archives: babstierno

This school fits juuuust right. 

Our sweet Roar is making so much progress. We pulled him out of his preschool and put him in a special school with a 1:2 ratio that will focus on his social emotional learning. 

Prior to this move, Roar could not function through a single day without exhibiting self-injurious behavior at school. He struggled to regulate his emotions, engage with peers, meet the multi step demands of his teachers, and navigate the daily routine. 

Roar’s sensory needs hijack his brain. It’s awful to watch. If you stop the behavior without providing an appropriate alternative, he begins scratching his arms/thighs or banging his head on the floor. 

His teachers tried ignoring the behaviors but that led to escalation. They tried intervening but that led to escalation. They tried isolation but that led to escalation. They tried holding him but that led to escalation. They tried every tool they had but at the end of the day, they just didn’t have enough tools to help my kiddo. Our relationship with the staff wasn’t always rainbows and sunshine, in fact there were a few incidents that I found unacceptable but I do feel they tried their best until desperation took over. 

The new school is incredible. The teachers meet Roar’s needs and limit the demands placed on him. He doesn’t have to wear shoes (big issue), he’s allowed to climb and even encouraged to do so (big issue), he’s supported when he escapes situations that overwhelm him, his hoarding is treated as a coping skill rather than a problem behavior, vestibular sensory input is incorporated into his day at regular intervals. 

Stay tuned. This kid is making serious progress. 😉

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Ugh. 

Things have been rough here lately. Looking back I probably won’t even remember why. I’m far overdue a post and have so very much to share but it will just have to wait. 
This is my outlet and I enjoy it. Life has suddenly become a bit too overwhelming to enjoy. Moments of joy seem like I’m robbing Peter to pay Paul. Two special needs kiddos is no joke. One isn’t either.
I swore up and down that good parents give it 💯. It doesn’t matter what it looks like, it’s still 💯. Somewhere along the line, it seems I started giving more than 💯. Taking from me and giving to them. 
Now we are all at a deficit. 
It will get better. I won’t remember this week. Life will go on. But today, this week, this month, Ugh. M

Learning how to autism

Another Cub moment, we are reading Sleep Book by Dr Seuss before bed last night. He gets upset because the characters aren’t real animals. I reply “this book is pretend.” He gets quiet, looks confused, stares hard at the book for a minute and says “it looks real to me.” (Meaning the actual book not the story)English is so hard for literal minds. 

This came up as a memory on my Facebook from four years ago. Cub is twice the size but nothing about the story has changed. Language is so hard for him. We have to be so thoughtful about the words we use, what they mean, what they imply, and how they could be interpreted.

It’s our normal. Problem is, it’s annoying in real life. I went away on a girls trip this weekend. We talked endlessly. It was amazing. Except- I spent the whole weekend basically saying, “Precision of Language.” (Read The Giver) and “clarify your pronouns.”

Annoying. Right? 🙄 My normal has changed. I am now wondering in what other ways I have tried to immerse myself in my son’s autism to clarify and enrich the world for him.

As I reflect, I have already noticed many other ways. He’s one odd example. (They are all odd).

Someone recently asked “anyone know where the area code 727 is?” I immediately responded with “St. Petersburg Florida. More specifically, I believe it’s  Panellas County.” What in the hell!? My grandparents live in St. Pete so I kinda knew it from that but not enough to offer it up as a firm answer to a question. The reason I knew it with such conviction is that Cub likes area codes. When I encounter a new area code I remember it for him. When I can answer his questions and have conversations about his interests I feel more connected to him.

So basically, I’m learning how to autism. I didn’t even notice. Wish me luck! 😁



Judgement

Confession: Cub takes at least 12 medications a day. 

Why? Because that’s what he needs to be successful. 

Why is it a confession and not a statement? Judgement. 

I was refilling Cubs medication dispensers tonight when I said to Tiger, “I think people would judge us if they knew how many pills we give our child each day.” He replied “you are right. Maybe even report us.” And then I said “I keep it a secret because I’m embarrassed. I feel like it presents as poor parenting and I want to protect him and us from judgement.”

This is what it’s like to be an autism parent. While our child is navigating an uncharted path in the world, we are second guessing everything, ourselves included. We are constantly walking a tightrope of empowering and protecting our children. 

I don’t want people to see his explosive meltdowns. “I keep it a secret because I feel like it presents as poor parenting and I want to protect him and us from judgement.”

I don’t want people to notice his tics (mouth noises, tongue turning, etc). “I keep it a secret because I feel like it presents as poor parenting and I want to protect him and us from judgement.” 

I don’t want people to see his intervention tools (headphones, fidget tools, weighted vest, pull-ups, etc.). “I keep it a secret because I feel like it presents as poor parenting and I want to protect him and us from judgement.” 

I keep this blog anonymous. “I keep it a secret because I want to protect him and us from judgement.” 

I started this blog because I needed this blog 7 years ago. I needed someone who would be real, honest, raw, and forthcoming. So here it is: Cub’s medications

With kids like mine, Easter Egg hunts need to be a challenge. Not to fear, we have a family farm in Knoxville. Easter Egg hunt in 10 rows of blueberry bushes makes the hunt go on for a long while! The Easter bunny hides them high and low and fills them full of coins. 

Congrats to all the blueberry pickers this summer who find the eggs the kids didn’t! 🙂 

Compression vest makes the difference. 

We took Cub and Roar to our family farm for Easter. It was a wonderful weekend.

 Roar struggles with safety and impulse control on the farm. Any farm is dangerous if you aren’t aware and cautious around equipment, livestock, tools, etc. Roar is NEVER aware or cautious. NEVER. He’s up for anything. We have to watch him like a hawk! 

This trip, I brought his compression weighted vest. When we got to the farm, I put it on him and we went for a walk. He walked the whole time (.25 mile)- no running and no unexpected detours! 

Funny thing is we’ve had this vest for six years and this is the second time it’s been worn. It was Cub’s but he hated it and didnt respond to it. We ended up going with a weighted non-compression for him. This vest has been patiently waiting to be “really useful.” (Sorry for the Thomas the Tank Engine pun) 

So now we are taking it to and from school daily so everyone can experience it’s magical powers. 

Opportunity of a lifetime (mine or Cubs?) 

I was invited to the United Nations World Autism Day (And Luncheon). 

The focus of the event was on autonomy and self-determination. My anxiety is going up from just writing that last sentence. Why?

Cub has an IQ more than two standard deviations above average. He’s a super smart dude. He can learn and memorize anything, if he’s interested in doing so. Awesome right? Why would I be anxious? With an IQ like that, he’ll be fine, right? 

Cub has issues with motivation and understanding the value of proving his knowledge (homework). He doesn’t see the value in communicating and collaborating with peers, viewing them as inferior. 

Cub also has serious social issues. He believes everyone is his friend. He inherently trusts people. Because he doesn’t lie, he believes others don’t either. He isn’t good at using words to communicate his thoughts and feelings. 

His future is uncertain. He has anxiety about adulthood, too. He tells us often that when he is an adult he wants us to live in the house next door. 

Can he go off to college, make friends that are a good influence, maintain good hygiene, use time management skills to complete assigned tasks, absorb course material and test well, produce work materials that prove his understanding, learn what he needs to know to be a successful professional in his field of choice, etc?? Nope. Not with the skills he has now. Challenge accepted. 

Our ultimate goal for our children is independence, autonomy, and self-determination. Charting the path from here to there is hard work. 

Thankfully, the United Nations is asking the world to be more compassionate and to accept the neurodiversity of autism in the professional work place. Only 15% of adults with autism are currently independent adults (meaning free of financial, legal, or decision making support). There are specific initiatives that are putting adults with autism in supported high quality employment. That means, one day, kids like Cub may be able to achieve the illusive independence. 

So, “I’ll start walking your way and you start walking mine. We’ll meet in the middle near that old Georgia pine. We’all gain a lot of ground, cause we both give a little. Their ain’t no road too long when you meet in the middle.”