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Like AOL dial-up… I’m ‘still processing’…

I realized yesterday that twice now since Marley has been formally diagnosed, I’ve explained her behavior with a quick “she has sensory issues”.

SERIOUSLY!? I can’t win for losing here.

I felt bad when I would stammer “She has Autism…” before we had a formal diagnosis. It only happened twice and one of those times it was to help explain why she was acting like I kidnapped her.

Now I’m beating myself up for not just saying “She has Autism” when trying to explain why we needed to visit a pup outside of the kennel at the animal shelter due to the noise.

Why? Why not just say it? On the flipside, why say it? She’s always been the kid that makes me say, “Oh, Marley!” and has been a bit different. That hasn’t changed with a diagnosis.  She’s still the same quirky, entertaining Marley that we love.

Mo at 22months

 

Mo (now) at 3.5yrs.

 

Growing up, one of my best friends had Cerebral Palsy. I volunteered with Special Olympics as she competed and enjoyed every minute of it. In high school, I took a class that placed me in an aide type position in the middle school’s Special Education class. As an adult, I worked for two years as a personal assistant to a young boy with Cerebral Palsy. I bathed, changed, tube fed, and read to him. I took walks with him, pushing his chair and talking to him about what we saw. I practically lived there– even staying with him solo for a week while his mom was out of town on a much deserved vacation.

Somehow, despite all of those experiences, I maintained this attitude of “Oh, I can do this, but I could never PARENT a special needs child.”. I even planned to go to college to become a Special Ed teacher, knowing it would mean 8+ hours a day in a classroom with many children with various levels of assistance necessary. Whenever anyone would comment about my job, my friend, or my volunteerism, I would always parrot “It’s not anything special I’m doing– the parents, though, I just am not THAT strong”.

Yet here I am.

Still not feeling ‘worthy’ to claim the title I’ve held in such high regard my whole life. I mean, it’s not really a title that people dream of. It’s not something anyone aspires to. Honestly, the hardest work comes after, not before. You can’t study for it. You can’t prepare for it.  It’s like a game of ‘crack the whip’ gone awry. Except it’s not a game. I don’t know that you ever feel like you’re “doing it right”.

Parenting... you're doing it wrong

Since we got back from Baltimore… and as we prepare to go again… I’m finding that I’m ‘still processing’ all of this. I haven’t found my groove just yet. Maybe it’s because as much as I “knew” and thought I was prepared, I got blindsided by how quickly this has all happened. Not only did I/we put off her behavior for quite some time, thinking we could modify it with time outs & such, but I was prepared for months of waiting and an uphill battle for a diagnosis.

Honestly, not only am I still processing having a name for all those behaviors, but I’m working on something much deeper within myself… I’m working on reaching out. I’m working on asking for help. I’m working on speaking up. I’m working on seeing a blessing as it lands in my lap and instead of saying “Why me!? Why us!?” saying “Why *not* me!? Why *not* us!?”.

 

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7 responses »

  1. I think you are doing a GREAT job 🙂

    Reply
  2. I too, think you’re doing great with Marley! None of us know how we will handle a situation until we are faced with it.
    I love that baby pic of her.. too adorable!

    I’m sure as time goes by it will get easier for you to speak up more precisely about Mo’s having Autism.

    Reply
  3. you’re amazing and you know it. what will happen (from experience) is that it will all fall into place. eventually you’ll get to the place where there doesn’t NEED to be a name for it. she’s just marley…quirky, autistic marley… i haven’t told people that Zach, Josh or Ty have autism since they were first diagnosed. I’ve learned that as my kids get older, and I learn to deal with life better (or easier…whichever) that I don’t care whether people don’t like how my kids act in public. If my kid in rain boots, boxer shorts and a cape bothers someone…well…tough shit. lol. of course, i’ve had nearly 7 years since Zach’s dx to learn how i needed to cope…then 4 years from Josh’s dx…and Ty is still undiagnosed…(but I *KNOW*) …. it’s just life. it’s OUR life, and well…we need to live it. autism or no 🙂 so, i ❤ you and i have faith in your sanity 🙂 hahaha. mwah!

    Reply
  4. My son was formally diagnosed this week, and, even though I was expecting it, I’m still feeling dazed. There were so many things that you wrote about in this post that I can relate to: guilt over using “my son has autism” as an explanation for his behavior before it was official; uncertainty whether to use the phrase again now it has been confirmed; thinking that my son is still the same lovable boy he was before he got this label.
    Thanks for your frankness here in your blog. It’s just what I needed this week.

    Reply
    • thank you cyn ❤
      i'm working on that.. the whole 'being more open'.
      i'm realizing.. (and working on a blog post) that autism awareness is kind of like 'aids awareness' or 'black mamba bite' awareness… being aware that it exists and knowing what it is (the reality and impact) are two totally different things ❤ ((hugs))

      Reply
      • I’ve quit explaining behavior to strangers. Mostly because it’s not their business if my kid has autism or if he’s just a brat. Also, because in doing so with both of my boys, they’ve labeled themselves…and are trying to self-limit themselves by saying “oh I have Autism, i can’t do” whatever.

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