Facing a Weekend Alone with Autism

I like to give insight into my world because I think it’s really eye opening. I heard a quote once that an Autism Parent is prepared for war at all times. I think that is true. As a mom to an Autistic six year old and incredibly active four year old, I know our limits.

Cooper’s daddy is going on a fishing trip this weekend and I’m flying solo with the boys. This means no going to grocery stores, no drive thru’s, no gas stations, or parks and I have to prepare for everything before he leaves. I know this might sound dramatic. Trust me when I say it’s not. It would take an emergency for me to willingly bring my severely autistic son and his active brother into a store alone. I’ve had some very, very bad experiences. And going into the stores is so unsettling for Cooper that he is ‘off’ for at least a day.

Thankfully, I’m six years in. I know how to prepare. I have constituency plans in place. We still don’t really leave the house but I try and have family on call to help with ’emergencies.’ This was a big step for a person who hates asking for help. It took me time to learn that when people offer to help…they mean it. And take them up on it. On Jamie’s last trip my sister-in-law brought me Capri Sun’s and strawberries at 8 pm on a Sunday night. I was desperate.

Our Life

I am having flashbacks to when Cooper was two and three. We didn’t live near any family nor did I really have friends that were close by. Asking for help wasn’t an option. I had a little baby and an Autistic son. Being alone for an extended period of time was terrifying.There’s the emotional side. Cooper didn’t sleep for more than 8 hours in a 24 hour period and never for longer than 45 minutes at a time. He was unsettled when awake. Think pacing, agitated, television obsessed. Think anxiety in a toddler.

Then there is the physical side. We couldn’t leave the house. Imagine being in a helpless situation…Cooper couldn’t be contained by a cart or a stroller. (Yes, there is Caroline’s Cart..wasn’t an option right then.) I would have a baby carrier and Cooper to fit in a cart. Cooper would hit his brother. He’d push Sawyer’s car seat. He’d stand in the cart. He’d throw every item out of the cart. He refused to walk. I refused to hold my hand. He would deliberately run from me. He was a runner in the parking lots and stores, a kicker, a screamer. He’d hit for attention. He would throw his body on the floor and roll around and scream. His only objective was to run and knock things off shelves. It was unreal. We drew huge audiences. And I had a baby too. Some of my most traumatic events happened bringing Cooper to the store for milk.I would sob after and think things like…’what did I do to deserve this? And why is my so so messed up.” It was ugly.

Our Dark Days

So, we were home bound. And when faced with sleep deprivation, rigidity, extreme food issues…a sane person would get out of the house. Walk around a mall. Go to a park. This wasn’t possible with Cooper. The trapped feeling was unreal. Also, at that time, I didn’t want to have friends with small children over either. I call those our dark days.

So, I prepared for war when I knew I was going to be alone for an extended period of time with my boys. I would do everything, and I mean everything, in my power to avoid leaving.

Yes, I probably have a little post traumatic stress disorder. I’ll be the first to admit that. But I also understand what doesn’t work for my son and I do everything in my power to keep him safe and happy. I am his mom. I take the brunt off the stress to keep Cooper safe. That’s my job.

I have a memory of needing milk at 7 pm. I couldn’t go. I had no family and friends to turn too. I remember breaking down and crying because I felt so utterly trapped. I remember I ended up driving through a McDonald’s drive thru and buying 10 little milks. That’s how stressed I was.

My boys are now four and six. It’s a tiny bit better although I still try not to leave the house. I am a fast, strong, smart mama and Cooper still alludes me. He is strong and sneaky. He can do some damage. I refuse to willingly put myself in those situations. I’m not hiding. I’m being smart. And yes, it’s terribly lonely and isolating.

I know this might sound silly to some outside my world. It’s not. The anxiety is real. Some parents can’t leave the house alone with their disabled children. At least not willingly. I am one of those people.

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  • Matt
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    May 14, 2017 at 9:26 pm
    Reply

    I fully understand your feelings and sit here sobbing wondering how to go on. It's heart breaking as your friends fall by the […] Read MoreI fully understand your feelings and sit here sobbing wondering how to go on. It's heart breaking as your friends fall by the wayside. At first they they try until they figure out they will never see their old friends again. Then you get less and less invites until they dry up. We about to move back to as close to home as we can get. Dreading to see which, if any friends, will be left in a couple months. Read Less

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About Me
About Me

Hi, I'm Kate. I am the mother to a little boy with severe, nonverbal Autism. This is a glimpse into our heartwarming, sad, scary, funny, loving and secret world. Check out my video tab to hear me ramble about Autism.

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