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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! 

Monday, February 8, 2016

The Right to Pee

For so many years I didn't make the time for therapy. It was yet another one of those things that I put on the back burner while I was too busy raising my children, taking them to all kinds of therapy. 
Now, I feel like a kid in a candy store every time I pull up to my therapist's office. Me time! Woo hoo! I'm gonna get sane. (In my sing-song voice.)

Therapy is helping me to put self-care on the top of my list.  It helps me remember to keep the boundaries that were erased by years of raising two children who demanded that their needs be met immediately. 
The other day, I realized that I still find myself holding pee. I have been conditioned to believe that I just don't have time. I always had to be in a hurry to do something for someone, to pick someone up or drop someone off somewhere, to make sure that all of their basic needs were met before I met my own.  
I confess for years, while in the thick of raising my children, I didn't take showers as often as I should have. I always felt like I had to choose how to spend my free time. Should I write or take a shower? Should I take a nap or take a  long hot bath? Should I eat or take a shower? But mostly, should I get some more sleep? I was always behind on sleep. 


I stepped into my therapist's office a few months ago, a blithering mess from the stress of dealing with Red’s transition into adulthood and out of my house. It turns out that constantly being the diffuser of explosions in your home can fry your nerves and kill a few brain cells. 
Even when there wasn’t an explosion, I was always preparing for one. I could hear screams in my dreams. When it was quiet, I was wondering why and when the quiet would be jarringly interrupted. If I was behind my closed bedroom door, who would burst through it, or start banging on it at any given moment. I hear footsteps. Are they coming towards me? Shit!

Being a mother for me meant years of trying my best to keep everyone in my house happy or at least from being sad, depressed and angry which of course, was impossible, not to mention, not my job. Making others happy was often at the expense of the things I wanted to do that would make me happy. Are mothers entitled to be happy or is that something you give up in labor and delivery?

That people pleaser in me spilled over into other areas of my life. I'm like Joy from the movie "Inside Out."  I want to be happy. I want my friends to be happy. I want my siblings and my parents to be happy. I certainly do not like upsetting or disappointing them.  Confrontation must be avoided at all cost. I don’t enjoy arguing. I live with people who seem to live for it. I don’t like being mad at people, and I certainly don’t want people mad at me. When you live with constant bickering and fighting, you try to avoid conflict in other areas of life.  
The trouble with all of that is that I found myself constantly giving myself away, one little piece at a time until there was nothing left besides stress, anger and resentment. I found myself always doing things I didn’t want to do. I was slowly losing my mind and becoming an anxious wreck, always taking on everyone else's negative energy and problems.

I am taking some of that power back. I am learning to say, "No. I'm not doing that."

When my father passed away two weeks ago, my husband volunteered us to do the obituary for the memorial service. He also tried to get us involved in setting up some kind of scholarship fund. I was like, 'Hell no! I don't have the energy for that.' You go right ahead if you want to. I did the part of the obituary that I wanted to do. I did the research, and I wrote it. I wanted no parts of figuring out the layout. I didn’t worry about how he waited until the last minute to get it printed. It was his deal, not mine. I set a boundary for myself, and I stuck to it. 

When I got to L.A. for the memorial service, I didn’t try to do my usual running around here and there and everywhere to see my friends. I let them come to see me at the memorial service. (It was really like a party, at a jazz club and bar, but that's a whole other story.) It was so wonderful seeing everyone, but when they all requested special get-togethers after the fact, I knew there was no way in hell I was going to do it. Sorry, friends. Red ruined that for you. I can’t stretch myself too far anymore. I just don’t have it in me. Instead, I spent the time with my family. And I didn’t even let that stress me out. If I couldn’t see my siblings at every single possible moment, it was perfectly o.k. (Okay, I felt a little guilty the day I didn’t make it down to my dad’s apartment to finish cleaning it out.) I was a little pissed that my husband and son were moving too damned slow to make it happen. (But, I digress.) The point is, the world did not end because I did not stretch myself too far. 
Last night when Blue started having a meltdown because he was unable to register for accommodations for the S.A.T. Dad comes into the room and as usual, starts adding fuel to the fire. Ah ah ah! Pump the breaks. Boundaries. I did not allow myself to get sucked into their crap. The difficulty they have communicating right now is THEIR deal, not mine. I can’t fix it. I can’t always diffuse it. I certainly can not take it all on and allow it to drain my energy. They are going to have to work their shit out…or not. I can’t do it for them.  I will not do it for them. 
Stolen from my friend Elizabeth Gilbert's FB page.
I am learning, better late than never to step back, to let go, to not engage, diffuse and try to fix every problem. 
I have worked double overtime for years. For now, I don't have to spend every moment doing something on my never ending to-do list. I have the right to:

  • have compassion for myself.
  • set and keep my boundaries. 
  • take time for me and not feel the least bit guilty about it. 
  • allow myself time to grieve for my father in whatever way I need to. (Which may include wearing black around the house, so that people will remember to leave me the f8#% alone.) 
  • allow myself time to adjust to the transition of letting Red go. Allow him to grow into adulthood, without me holding his hand along every step of the way. 
  • I can just be. 
  • I can take a long, hot, showers and not get out until the hot water runs out. 
  • I can pee every time my bladder says I need to. 
  • I can be an individual, not just a mom, a wife, a friend, a sibling, daughter, and caregiver. 
Most of all, grown-ass folk who can do for themselves should.  My family is now full of grown-folk, including the soon to be 17-year-old, who never wants to be told what to do.

It's my hope that at least one person will read this, take just one step back and save yourself from extinction. 
Be well or at least, half-way sane. 
~Karen