9 Comments

  1. cbspira
    January 18, 2016 @ 10:28 am

    You got me at “we’re working on it” I was crying and laughing at that point. That’s the refrain in our house – “we’re working on it”
    Don’t even know what that means, exactly. Who’s we? My kids are the ones who are actually working on it (whatever “it” may be at that moment) – I cannot begin to fathom what that work really entails. And every time I think I do one of them will say something that reminds me again just how little I understand…

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  2. LoriAnn
    January 18, 2016 @ 10:39 am

    As I sit here in the waiting room of the car repair shop, reading your post on my cell phone, with every word you write, I am travelling back in my mind. To yesterday. Last week. Last month. Last year. The licking of counters (my 8-year-old daughter prefers licking the freezer doors at our local grocery store), followed by “we’re working on it.” Baby Einstein. Renting the same videos multiple times from Redbox. “Phone calls and meetings and evaluations and tantrums.” I have yet to utter the words to my Rebecca: “…you have something called autism.” But it’s coming. I both welcome and fear that moment. “This is everyone’s autism.” Thank you for sharing these moments. For letting us know we’re not alone. And I am certain you’ve heard these words countless times from others, but I hope you know –REALLY know –that you are not alone, either. The tender, painful, beautiful moments you share with Jack are yours alone. But in those moments, I pray you will remember the unseen faces out here, silently supporting you. Thank you so very much for sharing with us.

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  3. juliep
    January 18, 2016 @ 12:59 pm

    Oh Carrie, I get it all. Thank you for being so honest.

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  4. Cindy
    January 18, 2016 @ 6:28 pm

    Ditto, ditto, ditto!!!!

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  5. Sharon
    January 18, 2016 @ 6:55 pm

    I love love love your writing. You always hit it just right. Autism may be different for everyone but sometimes it’s the same. Thank you for that.

    Sharon M.

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  6. Susie vanderKooij
    January 18, 2016 @ 7:05 pm

    You are such a gift; I feel related to, and heard….I feel calm knowing you and Jack are in this world with us…..thank you, for writing so beautifully and nailing another incredibly familiar experience………Jack and Adrian are so much alike!!!

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  7. GP
    January 19, 2016 @ 11:30 am

    Thank you so much for writing this post. I also have been there a million times, and I am feeling anxious just thinking about it. What adds to my personal anxieties lately is that I have been reading several blogs/posts by adults on the autism spectrum who write about the way sensory sensitivities and sensory processing differences affect their everyday sensory experiences. It sounds very, very challenging, and I now recognize that many of my daughter’s behaviors may be a way to avoid or drown out sensory discomfort or even pain (e.g. she experiences it as painful when the water of the shower hits her head, at warm or cool temperatures, set at the least powerful level; or the other day, she said she could not play air hockey because the plastic score board was asymmetric and made her feel “lopsided”; or the time she tried to get out of a therapy session because the therapist’s shirt had a pattern that made her “dizzy”; or when she had a meltdown in her class (before homeschooloing) because the freshly copied papers from the copy machine felt “hot”; or the day she had a mega-meltdown after a paper towel that to her felt like “sandpaper” (it was used after an echocardiogram). I could go on and on because lately she has been more and more able to verbalize these experiences (never during a meltdown though; then everything shuts down for her and she can neither receive my input or communicate what’s going on). Anyway, in our case, I am going to try sensory integration therapy. Occupational therapy helped her so much, but then she “graduated” (at age 6; 5 years ago). I am beginning to wonder if it helped her so much because they were addressing sensory issues. Now that my daughter can explain some of her experiences better, it makes me wonder if some of the sleep issues she had as a baby/toddler were related to sensory issues. Were the sheets too “rough”? The clothes too “scratchy”? To this day, she experiences a lot of sheets and clothing, that most find nice and soft, as rough. Except now she can tell us. And now, I understand what may cause some of her anxiety issues. -As far as the issues with the movies goes, Jack may actually be learning something or maybe he gets comfort out of repetition. Please don’t feel bad about Shawn the Sheep and movies that seem to be made for younger kids. I know several neurotypical adults with high-stress jobs who actually watch animated movies at the movie theater because it allows them to retreat to a much more peaceful place for a couple of hours. I guess it could be considered a coping skill. Maybe our kids also see a message in these movies (e.g. about loyalty, family/friendship, or forgiveness), that the younger kids may miss, and that our kids may relate to. Frozen was one example in our household. My daughter immediately related to Elsa and still sings “Let it go” whenever she hears it (just a few days ago at a toystore; stood in the middle of a busy toystore singing as loud as she could). She knows the lyrics to all the Frozen songs. Makes me cry every time when she sings “Conceal, don’t feel” or the ending of “Let it Go”: “The cold never bothered me anyway.” I guess it gives her comfort to know that she is not alone and that things may get better for her as well.

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  8. GP
    January 19, 2016 @ 1:16 pm

    I just asked my daughter to remind me about the Shaun the Sheep plot. She loved the movie, too. I had forgotten the plot, but now I remember. It’s actually a pretty smart movie. Spoiler Alert!!! Please do not read on if you want to see the movie for yourself.
    The farmer in this movie starts his life when he and his animals are young and they all love each other and they are very happy. Gradually, he forgets how much he loves them, and their daily life becomes a dreaded routine. The animals also become unhappy with their lives and try to get a day off. They create a series of distractions and the farmer ends up in an accident. He is brought to a hospital in the city and wakes up from his accident with memory loss. He does not remember his animals and starts a new life in the city (as a barber to the rich and famous based in the way he cuts hair…). In the meantime, his sheep want him back and they go to the city. To make a long story short, some events bring back some faint memories, but since he cannot place them, he seems to perceive it as a yearning for a better life. In the end, when his sheep are at risk of dying, he sees a reflection of him in the window with the sheep around him, which suddenly triggers his memory.-So, in this movie, he first forgets how much he loved the animals, then he has actual amnesia, and then the first thing he remembers when his memory comes back, is how much he loves them. Wow, right?

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  9. openyoureyes145
    January 19, 2016 @ 8:47 pm

    Jack is making progress. So proud of his red box acceptance moment!

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