Tuesday, March 18, 2014


You know, it's really funny how many folks that read this blog think I have come to terms with my son's autism diagnosis.  How at peace I am with it.  I have to let you all in on a little secret I've been keeping.  Depending on the day, HELL, depending on the hour, I'm not.

The other day I was having a virtual chin wag with some other autism moms and dads I know.  It would safe to say we all came from very different backgrounds and all of us had very different kids.  So it wasn't surprising that some of us were "Tote McGoats" with ye olde autism and some of us were all "It sucks."  I had a moment where I wasn't even sure what my current feelings were other than "It depends on the situation.  It can "situationly suck".  (Yes, I'm aware that "situationly" isn't a word.  What can I say? I'm a visionary.).  Hear me out before you come at me with your perky pitchforks and torches of why autism is fantastic.  I know it is too. 

My son has two parents who have a different neurological make up.  Two parents who's communication is completely foreign to his own.  He is stuck with two people responsible for his well being that still aren't fluent in his language, "Kiddoense", as I call it.  Every interaction, every exchange, and every conversation can be both stressful and enlightening to both of us.  I would venture to guess he's having just as many "Oh. So that's what they meant!" moments as we do.  Tons of information being processed at all times.  Busy even while at rest.  That's when it can suck a little.

I have missed so many signs of impending illness and or anxiety inducing situations simply because he can't tell me off the bat, "Ma, I don't feel good." or "I'm scared".  That more than sucks, that breaks my heart.  Time and time again I will be cursing myself about how I didn't notice the signs as I'm cleaning up his puke or trying to soothe him when he is upset.  He can tell me the number of a hotel room we stayed three years ago on a vacation but can't tell me that his ears are hurting him when he has an infection.  That blows.  As a mom, my instinct is cuddle and wrap my arms around him to comfort him when he is frightened but with his sensory issues being what they are, it is the last thing he needs or wants.  I won't lie.  That is so freaking hard for me.  I know that's my issue and I have to deal with it.  It's just not the type of mothering I thought I would be doing.  All these years later, still not used to it.  It sucks for him that he still has to remind me what he needs or can handle.   

My son has amazed me with how he views the world.  It's opened doorways I didn't even know were there.  He didn't just knock politely on those doors either.  He slammed them open like that TV character "Kramer" on Seinfeld.  Jarring as that is, it's been awesome. Eye and mind opening. I appreciate his patience with me because sometimes I didn't feel like walking through those doorways.  He dragged me in kicking and screaming.  Once I got there I was grateful but it sucks that some of our interactions can be like that.  I feel like I have failed as his mother that I resisted as much as I did.  That's when it sucks too.

I also forget how it's not just our little immediate family circle that is effected.  Listening to my mom give me parenting advice and sympathy but it's paired with "I wish I knew what to say. I never parented a kid with autism."  I can hear her voice catch.  I tell her it's okay. I don't expect her to know.   That's another "situationly sucky" moment.   She worries about me AND him.  (By the way "Granny Fry", that WAS the perfect thing to say at that moment.  That's exactly what I needed to hear.  So maybe it didn't "situationly suck" after all?)

His autism isn't going anywhere.  I'm okay with that.  It makes him, well, him.  I just hate watching him struggle.  I just don't care for the moments when it "situationly sucks".  I keep trying to help and support him as much as I can.  I just wish the "situationly suck" moments were less, for the both of us. 


  1. situationly may not be a word, but situationally is. sort of.

    I'm not on board with the "Diagnosis Party" people, but Lily's particular brand of autism is pleasant enough once you've made your peace with it. It's easier for me to be accepting of autism when my daughter isn't hurting herself or others (except possibly the cat) and is more or less happy and cheerful all the time. It would be harder if she were not.

  2. Great post! If you don't mind, I'm going to share it on the Autism Society of Nebraska Facebook Page later this week. I know I've felt the pain of the situation with my son. I also know we are not alone feeling this way. <3

  3. I would like to share on our page also. This is like you've read my mind (and my heart) again.

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  5. YES! You've captured it so beautifully. Sharing and sending to everyone I know :-)

  6. For what it's worth, for THIS spectrum-y Mama, with a son on the spectrum as well, it was only through FIRST learning (actually, through raising him) that i am often unaware of my own status (hunger, fatigue, overwhelmitude [hey, also a visionary here ;) ] ) that I began to be able to say to myself, "self, you should check in because you might be x/y/z" This has been enormously helpful!!! I guess what i am trying to say on a practical level is that knowing this is an issue and taking a step back and knowing at least what some of the possibilities might be, such as that your son might have low blood sugar or be getting sensory overload or [fill in the blank] is a very important and helpful first step that can lead to a LOT of improved outcomes. This might sound overly simplistic, but it was NOT obvious to me (and I have a ph.d.). Love,

  7. (((HUGS))) Mama Fry! I hope I get to a point where I can say it just "situationally sucks." (Great word by the way!)

  8. Awe - Granny that! Wish my mom wouldn't have that catch in her throat when she talks to me too sometimes! Great fantastic post! It's a day by day kinda thing for me too, totally get this! Thanks for sharing! *Ü*