1. Jenni
    December 7, 2015 @ 5:20 pm

    Carrie, we watched the movie Home on Netflix this past weekend (have you seen it?), and the way the main character Oh speaks reminded me so much of your descriptions of Jack’s speech. It was a lovely story about an alien who didn’t really fit in with the other aliens but who of course was the hero who saved them all. After reading your blog for quite some time, I thought of you when we watched it and just wanted to share!


  2. Tammy
    December 8, 2015 @ 12:44 am

    love. For Nash and I…we hate autism. Sometimes autism gets in our way. it keeps us from doing what we would like to do. when autism gets in our way I say…I hate autism. We both smile…because we know, whether we like it or not, autism is going to hang out with us. sometimes autism will sit in the background and let us enjoy what we want to do. sometimes autism is stupid and gets in our way. sometimes autism is not fair, is pushy and always has to be first. sometimes autism is that cousin…you know the one….he is annoying and gets us in trouble. and no matter what, we have to deal with him because he is our cousin and whether we like it or not, we have to play with him. I hate autism. when things get hard or complicated and we cant really tell what is wrong….it comes out that its autism. We hate autism. But, we have to deal with it. When we know something big is coming at us…we will ask that autism please stay in the car while we go and try to get something done. And if things go wrong…I will ask Nash if autism come in with us and it was supposed to stay in the car. Sometimes we can smile and look at each other and say…I hate autism.

    Since I started treating autism as a sometimes unwelcome guest, it takes the pressure off of Nash to know that autism is sometimes out of our control…its not Nash, its autism.


  3. ber
    December 11, 2015 @ 12:11 pm

    My son acts like he’s autistic. He reads but doesn’t talk to me. He spends more time scratching and throwing tantrums than talking. He hasn’t written a single word except maybe once a week at school. He can be watching a totally “safe” video recommended for kids half his age and suddenly throw a tantrum as big as a tornado or volcano–only you don’t know it’s coming and even the “experts” can’t deal with all his triggers. Sometimes their advice is, “just deal with it when it happens”. We know a little more than before: it can’t be too bright, too dark, too hot, too noisy, too crowded, too lonely, too confining, too open, under the ground, too high (for a different, scary reason–he might get too happy and jump off–same goes for places with waterfalls, rushing water and deep water). He doesn’t mind cold, in fact sometimes he acts like he’s comfortable in 45 and even 41 and wants no jacket or hat (NO I DON’T let him do that) and at 50 and above he used to demand NO shoes(!). Thankfully, her prefers to be dressed otherwise and occasionally gets cold enough to need socks and a sweater on indoors, because we can’t afford to heat our house to 69 degrees in the winter and we can’t afford to air condition it to 65 all the time in the summer. The times he DOES talk, he takes on my voice, makes it really angry, adds some words of mine that I have said and then makes them angry and adds a bunch of things I never did say, and sounds to other people like I am the Wicked Stepmother in Disney on a better day, and like man eating cannibalistic witch on a bad day. I don’t get this. I try to do everything I am told to do with him, and I have also clued in on his cues, including using more video style teaching, kitchen “fun” (experiments and teaching house stuff), art, things like cutting with scissors and trying to write on paper and doing some kind of math with a promise of a “reward”, favorite educational video or “treat” (mostly nutritional) or other fun thing afterward, even occasionally a little car or sticker or new book. But I am floundering, even my husband sees a little improvement periodically, in between complaining about our life and his job and his impossible boss (unfortunately there is some truth to that complaint–a “Master’s” degree person with far less science background than my Ph.D. telling HIM he’s STUPID and asking him and his coworkers to “make work” difficult and impossible things and not listening to them or understanding the problems and the science behind them–all she wants is RESULTS, and she “must” have RESULTS, or THEY’RE “stupid”)–sometimes I WANT to go back to work and have him and my daughter deal with him–next summer would be soon enough for me. I can understand his problems, but I am having enough of my son’s right now. I even told him to quit. I can’t live with my son alone and poverty would be better than having no husband, because I can’t handle things on my own right now.


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