Day 21: Holidays are Harder for us

While they are also fun and exciting, holidays can be a time of anxiety and stress for our family.

Between the changes in routine and being overwhelmed by people, smells, and noise—it becomes unpredictable. I never know how a day is going to be for us despite how much I try to describe that day to my daughter ahead of time. 

Whether it is her reaction to a gift not being what is expected or looking in different directions for a family photo— the smallest things can set her off, or even upset others.  

This is how our day went. 

She had fun playing with her cousins as long as they did what she wanted to do. 

There was a lot of screaming and whining. 

She threw her puppet show theater again and broke it for the fifth time. That thing is literally being held together with crazy glue at this point. 

They all ate tons of candy when no one was looking and hunted down 60 eggs in under 5 minutes. 

Then, incident #1 happened:

Ally started screaming and crying as she opened her Easter basket from one of her grandparents. She was angry because she already had that cupcake doll and yelled something about—how dare anyone get her a second one

On the outside, she looked like a spoiled little brat stamping her feet and being rude.

But there is more to it than that.

In her mind, at that moment, I had no idea what she was thinking or why she was spiraling. Why such a menial thing set her off. 

I know for a fact that my daughter will love and cherish that doll tomorrow regardless of how many she has. 

But it is not okay to act like a brat—autism or not—when someone gives you a present. I own that. I know that her grandmother understands but I needed her to apologize anyway.

So I walked her into the other room and tried to talk to her about it. I made up a social a story to show her that her grandmother was so excited to go to the store and buy her a cupcake doll and how much she loves her and that those words hurt her grandmother’s feelings. And that she will need to apologize and say thank you for the gift.  

Her face turned red and she clenched her fist and screamed. I explained again but she kicked and screamed and hit me. 

The part about saying thank you for a present she doesn’t like at the moment was obviously pushing her buttons and she went to hit me again and I grabbed her arm before she could. 

That was when my father-in-law intervened. 

He told her that she could apologize if she likes getting treats and toys from them or not get any more presents ever again for behaving this way. 

She made the right choice but again, struggled to follow through. 

It took another few minutes of prompting to get her to apologize and thank her and even though it was forced, it’s something she needed to do. 

The more she goes through these motions, the more it may stick. 

Then we had incident #2 after dinner:

People, even family members, have no idea what we go through on a daily basis. 

For instance, I overheard my brother telling my daughter that she wasn’t holding her fork the right way while she ate her cake. 

Then he teased me, “Doesn’t your mom teach you how to hold a fork?”

It’s an innocent joke when you live outside of our world I suppose.

It’s a jab though as unintentional as it was.

And on a wrong day, I may have exploded because he has no idea how something as simple as holding a fork the right way impacts our entire life.

That she spends hours every week in OT for two years trying to hold a damn fork, a pencil, crayon, scissors, baseball bat and so on.

But I said nothing instead because I didn’t feel like he would understand and it wasn’t worth the argument over a fork.

While this wasn’t an incident anyone else will remember, I do. And I know many of you reading this can relate to it because we often ignore these small things that aren’t really small in our world.

Finally, incident #3: Why does she keep grabbing her privates and asking if she’s okay?

Our daughter has a new anxious tick or behavior that she does now. 

She waddles and grabs her privates and whines. Then she asks us at least five times if she just has a sweaty butt, if she farted, and is she okay? 

Is the sweat going to turn into poop?

It has been a very difficult behavior to ignore and not comment on. But I have been trying so hard to downplay it and wait for it to pass. 

We were just at her Developmental Pediatrician on Tuesday morning and she did it there as well. We talked about this. She insists that it is anxiety-related. 

After everyone left tonight, I gave Ally a quick bath and put her PJ’s on and she hasn’t done it once since she has been relaxing with her iPad. 

There are a lot of changes coming soon. She is turning five, going to kindergarten in the fall, and she knows that I am going back to work soon and that she will be home with someone new. 

Am I going to take her to the doctor to make sure she doesn’t have a UTI? Yeah, sure. 

Do I think this is an actual physical problem? No. 

Because she acted this way when it came to making bowel movements on the toilet previously. 

Because this is how she is. 

This is our everyday life. 

It’s this or something else just like this. 

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