Category Archives: Parent

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

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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! 

2nd verse same as the first

Roar is in early intervention for speech and functional delays. He talks sometimes but mostly he’s quiet. His receptive language isn’t all that great either. We recently saw a neurologist, endocrinologist, and had genetic testing. Roar is also very low percentile for height. He’s been that way since in utero. No one knows why. Genetic testing came back normal, as have diabetes, celiac, thyroid, etc. 

So Roar goes to Occupational therapy, Speech therapy, feeding therapy, and sees an early interventionist each once a week. Exhausting. His progress is notable but not exciting. This schedule is identical to our oldest (Cub). So, second verse same as the first. The lyrics will be different because Roar is a “hold my beer/challenge accepted” kinda guy while Cub was always a tiny adult. 

Usually, I’m more positive but today I felt defeated. Tomorrow is a new day! 

My babies are sick. Only a matter of time until they “share” with me. Neither of them share anything except germs. Somehow, I have two only children. 

When they are sick, though, they are both cuddle bugs! I can’t get enough. 🙂