When Family Isn’t Best

It’s been a year. A whole year.

My son, Tucker, and I just got back home from his open heart surgery.

My daughter, Hazel, was in the throes of her worst regression to date. And my husband Sam, and I just decided to move to Texas for a new job; more or less on a whim.

That was the day I found out that Hazel had been hurt. 

Sam left early from the hospital, we just couldn’t afford for him to stay in Rochester with us, and Hazel needed her daddy home. She had regressed about three weeks earlier.

She went from babbling and engaging to retreating into herself. The eye contact we worked so hard to build up was gone. Line after line in the living room, at one point she had to have my coffee cup in her line while I was trying to drink it!

Meltdowns. Behaviors. Insomnia. Anxiety. 

Sam brought her to the hospital for a quick visit and she wasn’t herself, she didn’t seem to recognize me. This was beyond regression.

It was screeching, rolling, hitting, eloping, self injury…and chewing at the palm of her hand. Then tapping it with her pointer finger, very intentionally and chewing again.

I did my best to get to her hand and I saw a sore, but she was very protective of her hand and wouldn’t let me have a good look.

Her aunt and uncle, who she was staying with the four days that daddy was at the hospital, had a wood burning stove. We figured she got burned, somehow.

She didn’t, and still doesn’t, fully grasp that hot things hurt if we touch them. 

After we were home, barely settled in, I heard it.

“Mom said there was something going on with the sewing pins. Hazel wasn’t leaving them alone, so she poked her to show her they hurt.”

I was flabbergasted. Hazel wasn’t even supposed to be with his mom. There’s history there, which is why I didn’t ask his parents to watch her.

“Mom said she started to understand, because she got her to repeat ‘ow’ back to her, but it still doesn’t seem right to me, at all. Wouldn’t you want the first word you teach to your grandkid be ‘whee’ or something that means happy? I didn’t know what to do or say so I just grabbed Hazel and left”. 

The sore on her palm… it wasn’t a burn.

I drove over. Marched straight into the house and started calling for my mother in law.

“Sam told me about the pins! What the hell were you thinking?!”

I’ll spare you the full narrative that involves a lot of expletives and repetition. But, the long and short of it was, she knew what I was going through.

She knew how to handle it because I hadn’t taught Hazel that “no means no” because I was too busy labeling everything.

She started mocking “everything with you has to be a diagnosis; it’s OCD! It’s anxiety! Instead of admitting that she’s a normal, bratty toddler! I kept my son right by my side because I didn’t want everyone around him to hate him. I’ve been there!”

It had never actually occurred to me that anyone could hate Hazel. Or even, not like her.

That anyone would compare her to a problem-anything.

There was history, sure. But, hate? And, “been there”?

Having a child who can’t talk, can’t say that someone hurt them, can’t say they’re scared, can’t even explain why they have a pin after they’ve been told no…she hadn’t been there. But, in that moment, I was. 

A simple phone call “I can’t keep her out of the pin cushions, what do I do? How do you want me to handle it?” would have gone so far. So, so far.

I would have told her that Hazel finds pins throughout the house, and brings them to me because she knows she’s not allowed to have them.

She gets distracted because the colorful ball on the end. She wants to feel it in her mouth. She can’t help it. But when I see that she has one I thank her for finding it.

I put it up out of her reach and I redirect her attention. My beautiful little 2 1/2 year old didn’t know how to push furniture around to climb up on things she only learned that a few months ago from her little brother.

Which means those pins weren’t being put truly out of her reach. 
I will be first to admit, she can be a lot to handle.

She’s so busy, and obsessive, she hoards and lines and elopes and has so many other struggles. But every “problem” has been from people who don’t take the time to understand her.

Who chock her up to being a problem. Who can only see through judgmental eyes that she’s doing “bad” things, instead of taking a moment to see the beauty in a sewing pin.

Texture, color, feel, and contrast. Before you can teach someone with Autism, you have to learn someone with Autism.

She is more than her diagnosis, but her diagnosis will always be a big part of who she is. Adding a label to every layer of her personality, her quirks, her needs, and her stims, this beautiful person appears before you.

She doesn’t need more discipline. She just needs to be seen. 

It’s been a year.

Hazel hasn’t been left with her grandparents unsupervised since. And she never will be.

They cut themselves out of the picture and we cut ourselves out of Wisconsin. Living in a city where we know absolutely no one isn’t that much different than living with family right down the road. 

It took more than 4 months for her to peak back out of that regression, she only just fully recovered in mid December after another regression snatched her away in mid July.

She continues to rebuild her vocabulary. She still says “ow.” 

Written by, Sarah Foltz

My name is Sarah. I am mom to Hazel, a bright, peppery redhead who just happens to be severely autistic, and Tucker, an awesome little heart warrior prince, with the worlds most beautiful eyes. I have a page, Life With •my• Kids, https://www.facebook.com/thelifewithmykids/ where I get real about autism, congenital heart defects and the delays and beauty associated with both. 

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