Monday, February 15, 2016

Autism-isms -Snow Days by Jamie Cruit Knopik

Editorial Note: 
Today I am pleased to bring to you this guest post by fellow autism mama Jamie Cruit Knopik. 
When I read this post on a private support group, I knew I had to share it here on the blog. It has that loving autism-mom, quirky sarcasm, exhaustion and a side order of humor about this crazy autism life, that I  love. 
Enjoy!


In the wonderful state of Minnesnowta, there are some hardcore, Eskimo-like, winter surviving people. We don't get too many snow days. If they shut down schools, it's Defcon 2. Well, we hit that on Tuesday and Wednesday this week.

I'm talking early release, stuck in the house, stir crazy, iPads are dead cuz you won't let them charge, destroy the house, acting a fool, kill yo brother, have 20 meltdowns, autizzle to the nizzle, freak out, shove handfuls of chocolate down your esophagus (ok that was me), go all The Shining up in here type of days.

Then we have Autism.
Lovely, lovely Autism.
Autism NEEDS school. Like every single day.
Autism needs structure, routine, and an Occupational therapist on hand.
Autism hates snow days.
Snow days, bad.
Snow days Bring out the crazy.
Winter gate causes Autism to go all nuclear and have an Autism meltdown. Nobody wants this. Cuz there ain't no meltdown, like an autism meltdown. Cuz an autism meltdown won't stop. (Thanks Master P for the inspiration).
My house looks like it was ransacked by looters looking for free TVs.
A good bit of Monday was spent cleaning it up from the weekend.
If it was summer, they'd be outside swinging and half naked trampolining. (Donovan).
But it's winter so they are inside naked, trampolining all over my couch.
Today they are back in school, and I am exhausted.
I need to clean my war zone, but I'm sooo wiped out and running dangerously low on chocolate.
Autism doesn't just affect the person who has it;
Autism also affects those who do not.
I have second hand Autism.
The moral of the story is that autism and snow days don't mix.
Autism is hard all the time, but on snow days, Autism is a punk ass bitch.
That is all.
Off I go to clean the trenches.
Carry on.

 Jamie lives near the metro area of Minneapolis Minnesota. She has three children on the spectrum. Donovan will be 15 in April, Gracie will be 10 in May, and Alex will be eight in May. She also has a three-month-old baby boy named Davin.  Jamie is in the process of writing a book called Autism-isms: My life on Autism Avenue. I can't wait to read it! 

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Adelaide Dupont's avatar - Go to profile

Adelaide Dupont · 285 weeks ago

Dear Karen,

And for those of us who knew and appreciated these points in high school to a greater or lesser extent - always good to have a refresher and feel them through the current and future generations who we survived to be able to see.

I especially appreciated points 5, 7 and 10.

And young women not settling or settling down yet is a good thing.

"It's never too late to live our dreams" - but it may be too early for some of them!

And 8 of course.
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nicole · 243 weeks ago

Your heart and vulnerability can be felt in your words. The dedication of being someone's "person" is a gift, but can be draining. Thank you for identifying it for others to know they are not alone.
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Risa's avatar

Risa · 230 weeks ago

As always, awesome.
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LAH's avatar

LAH · 221 weeks ago

Glad you are finally getting some peace.
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Maira L. Coral's avatar

Maira L. Coral · 216 weeks ago

Dear Karen:
I was looking for information for my Multi-Genre Disability Research Project from my Early Childhood Special Education class on the web, when suddenly I came across your blog. I started reading this out of curiosity and I want to tell you that as you said yourself, you will not be Amanda Gorman, but you managed to make me shed some tears, perhaps because I felt totally identified with your words, especially in the part that you speak of your son. My son also has Asperger's syndrome, he is 19 years old and he is in the second semester of College. Also like yours, he takes classes from home, likewise my eldest daughter is also taking college classes from her room. At the same time, that I work as a preschool teacher from my kitchen through a computer, my husband sleeps in the room during the day because he works at night. Also in the afternoons I myself take virtual school classes. I am a 51-year-old Latin woman who began to learn the English language as adult, so maybe you find some deficiencies in my writing, however, I was very moved by how proud you express yourself about your son. Referent your mother, I liked the humorous tone that you give when your talk about her, so I did not want to miss this opportunity and stopped my assignments for a moment to let you know that your words do make a difference, since they reach the heart of at least those who have opportunity to read you. I want confess you that is the most long I have written to someone I don't know, because your words inspired me, thank you...
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Gavin Bollard · 209 weeks ago

Hi Karen,

Thanks for this post. I've been very distracted of late and so this was how I found out about our friend Kate. Kate's struggles were very real but they were so constant and so wide-ranging that it was difficult for people around her to address them. I think it's going to take a while longer for me to process all this.

I learned so much from Kate because she was always quick to point out the many injustices in the world. In her glory days, she was very much a crusader and she cared for everyone. Over the years, as her situation took its toll, I came to realise that it was the fact that she couldn't be put in a single specific category, that made the system fail her. She needed help that they weren't set up to provide.

She needed more care and she needed to be less alone. I'm so sorry that this has happened.

For a long while we were corresponding almost every day but a couple of months ago, I realised that she had become so stressed that nearly every interaction I had with her was starting to trigger her. I backed away to give her a bit more space. She only had a little time that she could stand to be online and there were too many things that she wanted to do in that time. I thought that by taking a step back, she could reach out to more people who might be geographically closer and able to assist.

Kate was a beautiful soul and she will be sorely missed by all of us.
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Spoil your cat · 122 weeks ago

Religion is usually a good thing, but not when it's extreme. In a religious community, there's usually less crime and drugs, but everything isn't good when it's intense and extreme.

Many of these living arrangement aren't good, and many of the people who run those places really don't have the residents' best interest at heart. Those places are like old age homes and foster homes, where you sometimes hear horror stories. They're hard to trust. But then there are good ones, of course.

The best thing for an autistic adult is either to go on living at home or working and renting an apartment and living independently, but that isn't always an option.
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Duncan · 112 weeks ago

I have a few friends who turned to religion due to the adversity of autism and special needs - and some who went the other way, seeing that no sane, kind god could do this to someone. In everything I do I try to at least think through the option of "what if I'm wrong?"

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