Category Archives: Autism

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

What do you need?

Sometimes Cub just can’t get control of his body. His body needs so much sensory input for him to regulate. 

When Cub was 11 months old, he would head bang to regain control during a meltdown. Watching our baby slam his head on the hardwood was heartbreaking and scary. We started early intervention soon after head banging began. 

Now, six years later, Cub has had years of Therapy to address emotional regulation (prevent the meltdown using coping skills) and sensory regulation (meet the body’s need for increased input). 

That doesn’t mean he’s “cured.” It means he has the knowledge to utilize coping skills when he gets upset (with caregiver prompting- co-regulation. We aren’t to independent self-regulation just yet.)  That’s actually why I’m writing this post. We always ask Cub and Roar, “What do you need?” to prompt them to verbalize their needs and access their self regulation “tools.”

This morning Cub woke at 4:00am. He’s been crashing into all the furniture and driving me nuts! Then he said, “My body wants it.” AMAZING. 

I sat down and let it happen. He crashed into the front door, began spinning all the way to the back door and crashed into it. Then back to the front door. He did this for maybe 3 minutes. Then he stopped, sat down on the couch and said, “Lets go. It’s time for school.” WOW. Regulated and ready to go. All by himself. 

This journey with autism is a rollercoaster. I’m choose to celebrate everything. Every success has a story of blood, sweat, and tears but that just makes the success sweeter! 

Gracie

 I read an article in fall of 2015 that prompted us to get Gracie. She’s been loved like a favorite stuffed animal and treated like one too. Sometimes she’s a firefighter. She’s also been a monster truck ramp, a helium hot air balloon basket passenger, a soup ingredient, a king of a lego castle, a lego train passenger, and more. Tiger and I feel sorry for her most of the time but she seems to tolerate it with Grace. 
 Here’s the link https://www.psychologytoday.com/blog/animal-emotions/201506/guinea-pigs-have-positive-effect-autistic-children 

Run Cub! 

Cub’s school has a run fundraiser every year. Last year he got overwhelmed after four laps and sat on the pavement with his hands over his ears. 

This year, I went too! My mom came as well. We took turns walking the laps with him. He got to 11! 

We ran into some issues because Cub, never one to miss a science opportunity, found a crack in the pavement which cued up an entire science lesson on how water expands when it freezes and moves anything in its way. 

He also taught his Sheba about typhoons, and land to ocean ratios. 

After he finished he got chocolate ice cream! His favorite. 😋🍦

I don’t fit my body

Tonight Cub asked me how old his brain was because he feels it doesn’t match his body.
Today he met a 6-year-old friend with the cognitive capacity of a one-year-old. Rather than thinking any less of the other child he began self-reflection. Without prompting, He quickly shared with me that he isn’t the same age as his body either.
After he asked, I shared his cognitive age with him (based on IQ testing). His reply was that he and (friend) are the same because they don’t fit their body.
I spend so much time explaining to adults how the autism spectrum works- they are all different but their challenges are similar- but Cub gets it.
I wish I could claim some credit for his insight but he’s lightyears beyond me.