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Friday, May 22, 2015

A different kind of tired

I get a little tired of always explaining my son's behaviors.  It's not that it's annoying and it's not that it takes a lot of time.  Sometimes, I just don't feel like doing it.  I just want to do what we need to do and go on with our day. I want folks to just see him and think "Oh, autistic.  That's why." and then just go about their day.

I get a little tired of myself resenting other kids and other families.  My kiddo is almost eleven.  Autism has been here roughly since he was two.  I'd like to think this grants me some sort of autistic tenure and I should know better than to compare him to any other typical kid his age.  Yet here I am, still doing it. Plus, I am not just tired but disgusted with myself when I see a kid having a hard time out in public and I still have to remind myself that maybe that kid is autistic. That they are probably having a meltdown.  Yep, that's right.  Mama Fry ain't perfect. I still need prompting not to jump to "Listen to that brat over there."  thinking. I know, I'm a real ass like that.

 I am getting a little tired of the same scripted conversations that we have day in and day out.  I mean, I love hearing him speak. God knows we worked so damned hard to get some of those words out of him.  I also know these scripts make him feel good.  They are the key to what's going on in that brain of his, I get it.   Still, I would like to not wax nostalgic of the greatest hits of his meltdowns. Yeah, that's his new focused interest at the moment.  Rattling off the dates he had these epic meltdowns on because they were so much fun the FIRST time he had them.  I'm just waiting for the walk down memory lane to trigger the upset again.

I am so tired of the planning.  Even the most basic of events require way too much thinking.  Is he due for his medications? Will we get back in time from out outing for the important nighttime routine?  I'm tired of prepping for every possible trigger.  I know all kids are unpredictable but it just seems my autistic kiddo is ten times more so.  Ironic, given the nature of his preferred structured way of life.

I'm tired of being told "I don't know how you do it." because really, what choice do I have?  Good thing I do know how to do it!  I'll let you in on a little secret. We are all making it up as we go! I haven't a clue anymore than you.

I'm tired of constantly calling doctors, emailing teachers, stopping by the pharmacy, trying to decipher the insurance paperwork and trying to do so in a cheerful and pleasant manner.  Extra fun to do after he's been up since 3 am or screaming for an hour over something that made him sad but he can't tell me what it was.

I'm not tired of my Kiddo though.  So, I guess I'll keep doing all this.  ;-)




9 comments:

  1. You're entitled to be tired. I think all parents are tired now and then, and sometimes more like now and now and now. And so with all you've experienced and continue to experience, you're entitled to it. Always.

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  2. You be tired Mama. Own that shit. Life can be fucking exhausting. Here to have a twitter girls night out when ya need me. Shots! (remember, @fullyccm!)

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  3. I absolutely loved this blog & could so relate to what you were saying - as I feel that similar tiredness & I too wish my daughter could do the same as other kids passing by in our street & she's 16 & non-verbal
    And definitely with you on the "I don't know how you do it"
    Its a case of each day at a time for us all-
    We will carry on as we have too as our love & compassion for our child has no bounds...
    Try to take 5 mins when & if you can as regular as you can
    Take care

    Love4mygirl - Andrea x

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  4. I haven't slept a full 8 hours in 7 years. A few years back going to grocery meant 15 to get dress. Then we you arrive your saying come here while sprinting up n down ailse. I then I HOMESCHOOL. I ask my self . How do I do it because I want to and IEP is not for me.

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  5. I don't have any advice because I'm tired too. But I hear you.

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  6. So good to know I'm not alone...hang in there Mama.

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  7. I find myself getting jealous of the families that have one neurotypical child. I see so many FB post on how helpful and caring they are in the care of the autistic child, and I think "Why didn't I get that? Why did they both have to be autistic?"
    And now I'm just worn out from typing this comment. Mummy's going back to bed now.

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  8. I'm tired of being told "I don't know how you do it." because really, what choice do I have?
    I used to think that way until I met a mom who was refusing all treatment for her daughter with Cerebral Palsy. Free therapy keep in mind. She said she didn't believe that therapy did anything so why bother. That was the moment I gave myself an ounce of credit for pushing my son as hard as I do during therapy. Not throwing myself a parade or anything but some parents do chose to do nothing.
    But I'm sick of hearing it too. All I hear is pitty and that pisses me off. Even when I'm feeling pretty darn pitiful. They should just buy me wine instead :)

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