My head gets messed up sometimes
This is what Ashlynn has said to me twice today. It’s rather timely since I just wrote about a post about letting our kids know they have apraxia so they have a name for the problems they experience.
Ashlynn (I thought) has known she has apraxia, but I realized I said it a lot when we were still just trying to get her words out and her sounds right, but maybe I hadn’t said it lately.
This morning she called me Grandma, stopped, and then hit her head and said “ugh. WHY DO I DO THAT??? You’re not Grandma…you’re um………….” I waited patiently. “Mommy. You’re mommy. Ugh. My head gets messed up sometimes,” and she hit her forehead.
I quickly told her “Ashlynn, your head is not messed up. You have apraxia, and that is what makes it hard to get the words out sometimes and also why you may say the wrong word.” My husband quickly followed up with his own words of encouragement.
Two hours later I was working on my computer, and she came over and started talking to me. I was asking her what she wants for her birthday. She told me her standard: cards, papers, pens. She’s always fighting over Jace’s magna tiles, so I asked if she wanted magna tiles. She immediately said yes! Then she said, “I couldn’t think of that word: magna tiles. I said Legos but that’s not right. Ugh. My head gets so messed up sometimes.” I started to say something, and she interrupted and said, “That’s because I have apraxia?” I quickly agreed and told her that’s why she goes to speech therapy. (Except she hasn’t been to private speech lately because of some personal family extenuating circumstances). So, literally two minutes later I look up and see this:
It’s not the best picture, but she has a box of decodable books we keep in the living room open and she is trying to read them. She noticed me looking at her and she asked, “When am I going back to speech therapy mommy?”
Sigh
Apraxia sucks. Ashlynn is amazing and her head is anything but “messed up.” Why does she have to work so damn hard. Why does she have to know she has to work so damn hard. Am I doing enough? Am I saying the right things? I swear being a parent is half doing what you think is right, and half second guessing what you said and did. 
It’s such an invisible disability at this point. No one would look at her and think apraxia. No one would look at her and think her “head’s messed up.” Ugh. That kills me. Look at her. She’s looking out our window here taking it all in. She is seeing and looking at WAY more than she says. Maybe one day I will know everything in her head. Maybe.
Sometimes, I feel like I’ve been jipped. Other parents get to hear the thoughts behind this picture. I try to read her eyes and her facial expressions. Oh she talks. That she does and she does it well now. I still don’t know everything though, and she knows it now too…..and I don’t know whether or not to be sad or happy she is empowered to know why talking and getting the words out is hard for her.
Sometimes I wonder if that’s unique to parenting a child with a communication disorder, or a more universal experience as a mother. I think of the ABBA song I love so much:
Do I really see what’s in her mind
Each time I think I’m close to knowing,
she keeps on growing,
slipping through my fingers all the time.
