Abby · autism · Down syndrome

Mind Vice.

One of my favorite Jack Donaghey quotes: (and if you don’t know who he is or what show he’s on you are dead to me)

I believe that when you have a problem, you talk it over with your priest, or your tailor, or the mute elevator porter at your men’s club. Then you take that problem and you crush it with your mind vice. But for lesser beings, like curly haired men and people who need glasses, therapy can help.

I’ve been walking around with something in my Mind Vice lately. I wasn’t even going to bring it up, but I can’t make it go away. I’m having a hard time crushing it.
Statistics. I like them, though, they’re not always representative of individual situations. Also, I think just knowing the information gives you the power to take action. For instance: some studies have shown that over 80% of parents with children with Autism divorce. Suck-O, huh? But that doesn’t mean it will be us. That’s why we do everything we can to keep our marriage good. We devote a little more time to each other. We budget money for dates and babysitters even when it means that we don’t get other things we’d like. It’s important. I think it’s also TERRIBLY important to not dwell on the statistic. You have the information, act, then move on. Sitting around on a possibility is futile.

So here’s some more information. Around 1 in 10 children with Down syndrome ALSO have autism. Didn’t know that? Me neither. Not until after she was born. I’ve never EVER felt like this would be the case with Abby. And I’ve been white knuckling holding onto that feeling. But it doesn’t help anything that Abby’s brother has autism. Still. She’s NOTHING like Casey. Not really. Right? So two weeks ago her Occupational Therapist (who I LOVE and trust) brought up one of her other kiddos that she visits who has both diagnosis. I felt as though she was trying to pry my fingers off of the feeling I had that Abby isn’t also autistic. Then she slowly but clearly said that Abby is showing a lot of the same signs. Abby rocks a lot. We call it “dancing” but it’s very clearly a “stim” ( stim: v. to self-stimulate; (specifically) among autistic people, to fixate on a comforting or compelling thing or action (such as rocking or humming); to perseverate. Also n., a (self-)stimulating thing or behavior.) She also flaps her hands a lot and has some sensitivities to textures. Stimming isn’t unheard of in the Down syndrome community- especially for those kids with sight problems (which it doesn’t seem like Abby has at this point).  I know what autism looks like. I see it every single day. I don’t see it in Abby. But I don’t know what autism looks like in a child with Down syndrome. I told this to the therapist and told her that I honestly did not feel like she has autism. BUT I told her that I’m awesome at denial and that if she continued to have concerns I hope that she’d let me know. 

I thought I was doing a good job crushing it in my Mind Vice until this week. Abby’s stopped sleeping. I’m praying that it’s just because she’s getting teeth or something, anything. But she gets up and rages for hours. Last night she woke up at 2 and didn’t stop screaming until 5. Then she was up at 6 and hasn’t gone back to sleep (it’s almost 11). I’m worn out and I’m worried.
Peyton yells, “look, Mom, I made Abby an Army Baby!”
I’d be so freaking pissed if Abby had autism, too. It’s like it would take away all the cool parts about the Down syndrome. The easy personality. The joy.  So in talking about this to my husband he said the best thing: 

“So?”

And I wanted to freak out at him. Of course. But then he went on. So what? Does it change who she is right now? It doesn’t. She’s still the sweet, easy going child that loves without reservations. She’s smiley, she’s perfect and it’s like holding heaven when you hold her. Worst case scenario, she has both. But that doesn’t change who she is right this second. Or really, it’s not going to change her future as significantly as it did with Casey. When Casey was diagnosed, it changed the trajectory of his life. We’ve fought to keep him on the same course, but we knew that things would never be the same. An autism diagnosis in Abby wouldn’t really change her trajectory because of the Down syndrome. It would undoubtedly make things much harder, but it wouldn’t be the same burden if the diagnosis was on it’s own. Does that make any sense? 
 
Again though, and I have to hold onto this. With Casey I knew there was something going on. I had that gut feeling that there really was something off. When we were getting him diagnosed I had no reservations. I knew we were right. He has autism. 
Then when I was pregnant with Abby I had those feelings again, too. But not that something was wrong. Just that she had Down syndrome. Specifically. I knew. I thought I was being crazy, but those gut feelings were right. 

I don’t FEEL like Abby has autism. I just don’t.  Doesn’t mean that it’s not the case, but it does mean something. We’ll pray like crazy that what is best will happen and we’ll move on. We always do.


6 thoughts on “Mind Vice.

  1. I remember taking Danna to the doctor for a health problem and having a nurse practitioner go psycho on us yelling at Danna and telling me this was not a health problem but an emotional/psychological problem and that she needed therapy. I felt the same way you feel. In my gut, I was sure she was emotionally stable, but I still mentioned it to her school teachers and Church leaders and asked them to let me know if she exhibited any signs of needing therapy. It was a blessing for me that they all supported MY feelings rather than the health care person's. Have you had a blessing? Has Abby? recently? specifically about this?

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  2. I also agree with Pam. Love you sis. Always follow the promptings that you are given. Abby and Casey are so close to the spirit. Maybe they can give you some clues, or even just some comfort in this crazy moment.

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