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Tuesday, June 17, 2014

I'm mad as Hell

And I'm not even given the choice if I want to take it anymore.

No one talks about the anger that comes with autism.  I've seen a thousand blogs about mourning and grieving for the child you thought you had but SURPRISE don't.  I've seen a thousand more about dealing with your depression because of the constant stress that caregivers are under.  Then there are all the fuzzy feel good autism stories of the moment.  You've seen them.  They come in viral waves through your newsfeed of some kid with special needs doing something amazing or people being supportive.  They usually hit a peek and then we wait till the next "Gee, ain't autism swell" story.

No one talks about being pissed off though.  Well, I'm sure they do.  It's just that those stories don't get the Huff Post or UpWorthy love do they? I'm not going to lie.  There isn't a day that goes by where I don't think at some point "Fuck this!".  This autism stuff.  It makes me mad.

I'm pissed off my kiddo is constantly wrapped up in anxiety.  Even about stuff he looks forward to doing.  He is so easily overwhelmed and consumed by his fears.  I hate that this is part of his life.  I hate he can't always communicate his anxiety.  I just have to guess a lot and then store it in the "things that may set him off" file in my brain. That file grows bigger by the day and yes, this makes me angry as Hell. Let's not forget the compulsion that makes him completely unaware of his surroundings at times because of his fixation of the moment putting his own safety at risk.  I am seethe with rage over that too.

I am full of rage at every school shooting because now Aspergers/Autism is immediately the first thing that media brings up.  Without even researching if shooter did have ASD and more importantly, had other co morbid conditions and issues going on.  Even if it happened once, please stop linking violence to autism.  Maybe it's because these shooters have all been males and I have son that I am extra weary of this.  I just look at my kiddo thinking how he already has an uphill battle of proving himself to the world.  He doesn't need to be feared.  In fact, he's much more likely to be a victim of violence and or bullying.   Another fact that feeds my anger.  It's not an issue of if this happens but when.  That's how high those odds are in this case.

And since I'm on a roll, how about every celebrity (and that term can be used loosely for most.  Looking at you reality TV players)  that has autism in their lives not feel the huge need to write a book about autism.  Can we all decide that they do not need to be propped up on pedestal  and be deemed autism gurus?  Cause all their books do is piss off an already divided community. Like a lot.  Those stories then become the latest autism hubbaloo that fill up a social media newsfeed and frankly they are big fat wastes of time.  I'm not saying they don't have a right to share or use their platform but for fuck sake, please realize that we average Joe moms don't need yet another story on how you overcame autism. There is no end game in autism.  It doesn't end for us simply because we got to the last page.  Maybe that's why I prefer blogs.  The story is never over and ever changing.

Mostly though, I'm mad at myself.  I get consumed with my anger towards myself and my choices.  I hate that I have so much second guessing going on. I hate that my husband is always exhausted and freaking out about being the sole bread winner in this house.  I get mad at myself for needing to be reminded that my kiddo is awesome and has come so far.  I get even madder though when I think about how much more there is ahead to tackle.  Being this mad and full of anger all the time is effing exhausting and I'm already sleep deprived.  (Yeah autism, what's with this whole sleep is optional thing cause damn that really pisses me off too.)
   
I think I need a time out.  Off to hide under my covers with a book or until the kiddo decides I am done reading said book.



28 comments:

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  2. {standing applause} from a mom of one nonverbal who was up before dawn refusing to sleep & one w/Asperger, who is CONSTANTLY overwhelmed w/anxiety & perseverations, plus 2 more with social anxiety issues. I relate to your writings so much!

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  3. Omg yes. Today was a rage day for me too. Frack I hate feeling this way. Hugs.

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  4. Anger is a sticky b----! I never felt real anger until my mother died. I cared for her by myself for 2 years while she suffered from cancer. When she was near the end she would cry out in the night for her daddy. I didn't sleep because I was afraid she would try to get up in the middle of the night and fall. I was completely alone. 10 years later and I still can't shake the anger. It creeps in when you least expect it. My son has Autism too. I thought my mother's death was going to be the hardest thing I would go through in my life. Wrong! Parenting a child with autism is like parenting on steroids. The hardest part for me is that we are allowed such little room for error.One rookie mistake can set you back weeks even months. The anger is still there. It is probably what keeps me alive but the though of something having power over you, well makes me even more angry. I guess what I am trying to say is I totally hear you!

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  5. OMG can totally relate! Thanks for posting!

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  6. Thank you for posting. I know exactly what you're feeling. Keep your head up. Lots of hugs.

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  7. Yes! I was sooo mad at ASD this morning!!!! I actually did take a time-out.

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  8. Thanks! Can so relate to what you write.

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  9. Thanks for saying what so many of us can relate to. I get so frustrated and angry about the situation then angry at myself for being frustrated and angry. It's so hard to let go of.

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  10. I hear you Fry Mama! There have been days that I was so pissed at autism/anxiety that I wanted to scream. Times when my child wanted to do something, and we'd make it all the way there only to find out it was too much really made me mad. Hang in there, we're all in this together.

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  11. More than well said.
    I am pissed that I have to be the pushing agent in my family and dad gets to be Disney Dad.

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  12. I completely understand where you're coming from. My son is 5 and has autism. We found out when he was 3. My anxiety and depression was so bad that I was in therapy for a year and a half. Perhaps you could use your plAtform such as this blog and facebook page and clear up the misconceptions about autism. You've come this far. Hang in there and enjoy your child or children! Much support and love!

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  13. Oh thank you! I love your blog, it's real.. no bullshit!!
    I'd tell you to keep your chin up and everything will be ok, but we all know that no amount of chinlifting will make the slightest bit of difference - so, have a glass of wine!! Hope life is better on the other side of the moon! HUGGS xxx

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  14. THANK GOD!!! It's not just me!! I still feel angry that ... well I get angry over this damn situation we're in. I get angry we HAVE to fight for every damn thing she needs just to get through the day..... im angry that the whole spectrum is always under scrutiny when ever anyone even mentions it .... im angry over the whole... "oh yeah my neighbors cousins third friend has that" comments that inevibly come up. .I am also angry that her father never wanted her isnt in her life and I have to deal with this shit all on my own!! ..... oh god I'm not going to get to heaven with those thoughts hey.... and I dont give a crap....

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  15. OMG I can so relate to this. My family wonders why I am angry so often and this is why. I am pissed off a hell of a lot these days and grumpy. Always grumpy. Thanks so much for sharing and speaking on behalf of all of us:)

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  16. I'm pissed off that I lost my job, and I can't find another job because I really, really have to declare the fact that I'm disabled (more so by depression and anxiety than autism, but autism is right up there amongst the list of the guilty) and that, in 2013, the unemployment rate for those with a disability was 13.2 percent (as compared to the rate for persons with no disability is 7.1%, http://www.bls.gov/news.release/disabl.nr0.htm). I have to increase my depression meds because I've just been feeling more blah than my usual blah. The doctor who gives out my federally controlled substances (otherwise known as a nerve pain and seizure meds) refuses to see me again until I get my diabetes and asthma under control (the county-funded low cost health clinic would have cost me $78 for labs AND doctor appointments; I see someone at the state-funded health clinic next month and, in the mean time, and procrastinating on a follow up at the free clinic because I know the news isn't good) - um, hello? No job? And they say I'm the socially challenged one? PHFT! I can understand the need to present autism in a positive light, but it's not always unicorns and rainbows over here. It's Florida, the unicorns would have drowned in the rain a long time ago :-P

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  17. My son has autism HFA and had violent tendencies through behavior therapy etc they have dramatically tapered off to non existent. Last year I received a call from my SIL that her oldest son and his wife decided my son was too dangerous to be around their 3 & 6 year old. They wanted a sitter for my son for Thanksgiving and Christmas . This side of the family we only see an average of 10-14 hours a year. No one called me with their concerns which would have been fine, they just went off what Grandma told then never bothered to speak to us. Please fell free to imagine my response....Anyway we cut them out of our lives and assured them they will NEVER see our son again and after my hubby's mother dies wont be seeing us either. They cant figure out why we were so upset!!! SIL also decided it was a good thing to send me an article titled" I am Adam Lanza's mother"

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  18. I know where your coming from, I feel angry far to often but of course if Mommy takes a time out the youngest (4 yrs, ASD) will be trying to climb, and then leap from, every tall piece of furniture he can get to or try to find a way through the third floor window. The middle child (9 yrs and awaiting test results) who is so tiny he's mistaken for his brothers twin and has the face of a cherub announced very seriously that he will be a villain when he grows up. The sister who never gets the attention she deserves but made the honor roll this year. Hyper vigilance, exhaustion, fear, meltdowns, heartbreak and five million appointments. Yeah, I think anger is warranted. Just a struggle to make sure to not aim it in the wrong direction. I need a body bag (the kind for punching not the kind for bodies)

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  19. I'm there with you Mama Fry! I am extremely depressed and frankly exhausted from all the anger I have to hold on to in order to keep the wheels on the bus.

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  20. My boy is only five, no-verbal and at this point I haven't had a Fuck this moment....yet. As time goes on and school and bullies and his not being able to get his point across Im sure I will want to go Hand That Rocks The Cradle on a few people that want to be mean to him. Just remember God wouldn't give you more than you can handle and your baby swam the fastest during that fateful moment of pregnancy. Don't get mad, get even....Best revenge live a happy life.

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  21. You make a lot of valid points my friend. I'm a singe mom & my Autistic son will be 20 in October. It's been a tough road at times raising him, but there has been a lot of joy as well. He is the best thing that ever happened to me.

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  22. I've certainly been angry myself, and so has my autistic son. Particularly when the local prosecutor wanted to send him to jail. I've written about anger and that incident in two books - Be Different and Raising Cubby. I also wrote about my own anger as a teen in the central chapters of Look Me in the Eye.

    But I realize that being angry is ultimately a dead end. It does not generally lead to good outcomes, and I think it's more constructive to try and move in a positive direction. Not to say I'm not angry at times still, but I realize it does not lead anywhere and I try my best not to linger in that state.

    I'm sorry if the tone of my writing angers you further; I'm not sure if mine is some of the writing you're distressed by in this post. I'm well aware that autism does not end, or get cured, and I know all too well that both the gifts and disabilities of it are with me always.

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    1. You're writing never does. Trust me. I value your insight. I was referring more to the celebs that do it for for cover story and how media loves using autism as a buzzword or a sound bite. This post is just a snippet of what's going on in my head on any given day, a spectrum of emotions if you will. :-)

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  23. Thank you so much for this post. I can relate in so many ways. I'm trying so hard to find a way to cope with my anger, stress, frustration, sadness....it's literally taking a toll on my body. I think I've aged 10 years just in the past few years. I never had health problems until recently. It's hard because I don't want to burden others with my feelings, but then I know I need to talk about them. I'm in the mental health field. I know my risks, I know what to do and I try to take care of myself, while taking care of my son, but I feel I'm failing. Sometimes it scares me, but I just try to keep moving forward.

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  24. As mother of a 29 year old with autism, I wish I'd had a friend like you or Kiddo's Mom about 23 years ago. You don't know how blessed you are to be able to communicate with other parents. Asperger had written his paper the year my son was born, so the whole US believed you HAD to be what was then called "retarded" to have Autism. Hang in there. It's OK to be angry and try not to worry about things far in the future. <3

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  25. I get very overwhelmed with guilt and anger. I watch my now 17 year old overcome so many obstacles , just to have new ones appear. He gets bullied and that breaks my heart, makes me not want to send him to school.
    I get tired of the doctors, meetings, fighting the school, seeing hurt feelings. It's all so hard, yet he is an amazing person and I could not be any prouder of how he just keeps going.

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  26. I AGREE 100%! No one understands the stress of trying to teach your child EVERYTHING that should develop naturally with maturity and age. I'm pissed that I'm so damn pissed!

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