Wednesday, May 13, 2015

Autism PTSD

In my constant state of self-observation, I have noticed a lot of changes in myself lately.  In other words, I'm always trying to figure out why I am so crazy. 

There are so many things that I used to enjoy that now...I just don't. Some things are simple like, talking on the phone. When I was younger, I lived for the phone ring to chat or make social plans with my friends. Oh, and the single days of waiting for a particular fellow to call.  Makes my heart flutter just to think about it. (Honey ...I'm totally talking about you.) 

Now, there is a slight sense of dread, maybe even panic when the phone rings. Most of the time, it's Red wanting absolutely nothing other than to repeat himself.  Otherwise,  it's Blue or my mom requesting services from me.  The other minority of the time, I just don't want to talk.

There are a few people who are an exception to that rule. I still have girlfriends across the miles that I like to catch up with occasionally. It's just so rare that I have moments quiet enough for lengthy conversations.  With one of my best girlfriends, I usually make an appointment for us to talk if we haven't seen each other in a while.  It sounds crazy and weird, but hey, that's my life.
A big part of the reason I don't like to talk as much, is that after listening to my kids talk, all.the.time. I got nothin left! My mother gets her feelings hurt because I don't come down to small talk and chat when the boys are not home. Sorry, but I am busy trying to decompress from the constant noise! 

I used to love to go to parties and socialize. Now, unless it's a very close friend, I  look for excuses not to go.  This past weekend, I attended one with my husband and his friends. I tried to avoid it.  In my head, I made up all sorts of excuses. But since hubby has been traveling a lot, I ultimately decided to be a good wife and go with him.  I ended up having a pretty good time. Plus, there was cake! Deep, dark, decadent, chocolate, chocolate cake. Totally worth the trauma. 

The thing is now; I find myself taking these sensory breaks at parties. I hide in the bathroom for just a bit of quiet for a few minutes.  I look for places to sit quietly alone so that I can stop smiling and being pleasant for a few moments.  I need time to collect my thoughts and clear my cluttered head.  

I have also noticed that I find myself dreading holidays and all of the pressure that comes along with them. I used to be the queen of Thanksgiving, Christmas, New Years and oh my God, birthdays!  I have written about our last disastrous No Thanks Giving and many others in years before.  I've written about our family's Christmas insanity many times. (You should read those posts if you haven't). If you're an autism parent, you will identify. If you're not, you'll probably cry for me. 

I know that I'm not alone. A lot of autism parents feel the same level of hatred for holidays.  It's because of how our children may or not behave with the extra pressure and anxiety.  It's a part of this thing I call Autism PTSD (Post Traumatic Stress Disorder).  PTSD is an anxiety-based disorder that happens when a person has experienced trauma or has repeatedly been exposed to traumatic events. PTSD can occur to soldiers who have been in a war zone or to a victim of a crime.  Autism PTSD is when you are consistently experiencing traumatic events in your home or out in the community while raising your child with autism, who may fall apart emotionally, act out physically and have a meltdown at any given moment. 

I've read several articles about it lately.  Jess at Diary of a Mom wrote about it. A few weeks ago I read an article titled "Stress PTSD and Parents of Kids With Special Needs." It was a huge aha moment for me. I was like, YES! This is my life! 

According to the National Institute of Mental Health, One of many the symptoms of PTSD is Avoidance. 
  • Staying away from places, and events that are reminders of the experience (I want to stay away from home all the time. I have to take a moment to gather myself in the car in the driveway before I come inside). 
  • Feeling strong guilt, depression, or worry. (Check! Constantly!
  • Losing interest in activities that were enjoyable in the past. (Talking on the phone, having parties, attending parties.) 
  • Feeling emotionally numb (Check! Check!) 
Hmm...sounds eerily familiar.  Avoiding talking. Avoiding socializing. Avoiding holidays -no longer enjoying them because of the many traumatic experiences in the past. Feeling numb -no desire for the enjoyment that used to come along with these activities. 

When our kids are diagnosed, we begin living a new normal,  which is anything but normal. We are pretty much in a constant, heightened sense of stress ...always waiting for the other shoe to drop, for the phone to ring with the school or the kid on the other end of the line with some major issue.

Lately, in our home things have been a little bit better. Red is not melting down and ranting quite as often.  He's still a stick in the mud and negative, but things are ever so slightly better.  Of course, where Red slows down, Blue speeds up. So even the slightest progress can be difficult to celebrate and enjoy.  It can be perfectly quiet. I am sitting here reading, but I'm waiting for screaming to start, for the argument to begin or for the actual physical fight to break out between teenage brothers. Autism PTSD! 

I am constantly diffusing, trying to keep my mother from pulling a trigger --to just stay out of everything or not scream at the boys. I flinch when I think my husband is about to blow a gasket and set one of the boys off. I usually jump up and try to deescalate it. I feel like a puppeteer trying to control all of the strings so that the puppets don't end up saying the wrong things and end up all mangled together; the house destroyed, another hole in a wall or a door in the process. 

I am, by the way, working on that need to control all interactions at all times.  I just can not do it!  I can not control the kind of relationship my husband has with the boys. I can not control their every interaction.  It's impossible, and my husband resents it.  I'm sure my mother does too, but hey, she lives there by her choice, and she is not their parent. I realize that especially when it comes to my husband and the boys, I have let the chips fall, and the dust settle. It is super hard for me to let go. But again, I am trying to keep control to avoid explosions, like a soldier, in a war zone! (PTSD)

For Mother's Day weekend this year, my husband did take the boys out of the house on Saturday to see a movie. It was heaven ...for me.  I did nothing.  I just absolutely relaxed with no guilt of, I should be doing this or that. It was torture for my husband. Red spent most of the day complaining, and asking his father, "Why do you have to be so military?" Nothing was enough. Nothing his father did was good from his perspective, not the shopping or the meal that he gulped down in 15 seconds flat. 
My Mother's Day Gift
Peace, Quiet & Sweatpants
Sunday the actual Mother's day, was mostly good.  I tried to relax. I did not cook. Hubby picked up Italian food. The boys were mostly home and mostly bored, so you know how that goes. Red did go to church, but he came home complaining about the fact that he couldn't see his girlfriend that day. She was busy spending it with her mother, seeing as it was Mother's Day and not Red Day.  Her mother deserved her daughters' full attention without any extra drama or distractions. Red complained
However, there was no screaming.
There were no major fights or major meltdowns.  
That does not mean that I didn't spend the entire day waiting for one to happen. 


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