Hello dyspraxia…thanks for making me cry
I’ve been riding a pretty nice high in the post apraxia diagnosis era. Mostly positive and determined, I had taken action and Ashlynn’s speech improved significantly. That is such a celebration, truly. Everyone comments within the family, at work, or at school how her language is exploding and she’s talking so much more!
Yes!
But then…..her dyspraxia started becoming more noticeable and our focus shifted. Dyspraxia affects her ADL’s (Activities of Daily Living) which include not only things like brushing teeth, taking a shower, getting dressed and undressed, toileting skills and using utencils, but also affect writing and gross motor skills. That’s okay. We would tackle that too. Make sure she has school and private therapy and we will beat that too. All in good time dear Watson.
It’s just…..time. There isn’t enough of it.
Every motor act is so laborious. Determined to make sure she can one day attain independence, we have been making her (some days more easily than others) do it all on her own. It is excrutiatingly painful to watch. For example, despite getting dressed every day for at least three years now, Ashlynn still struggles to dress herself. It’s not for lack of trying, okay sometimes, but every step is hard. In those three years, my son, her younger brother, went from being a helpless baby to perfectly independent without any help or cues from us. He has literally zero issues with the motoric aspect of getting dressed and complete a night time routine, start to finish, even putting himself to bed.
Tonight he asked me, “Why can’t Ashlynn do it?”
I wonder in those moments how she takes that. Currently it’s all in stride….but i wonder.
I switched insurances since private out of pocket therapy for EVERYTHING was killing me, so at least with Kaiser, my insurance, she will get some visits paid. I took her in for the OT eval and jokingly told the evaluator I was sure she would qualify. I’m pretty aware of her issues at this point. When she came out, she joked back that “Well, she does DEFINITELY qualify” and went on to tell me how sweet and wonderful she is.
For some reason I instantly felt sad. I don’t know what I was expecting. I know what I would wish.
“No Ms. Smith, she’s a little behind but all within normal limits.”
Why? Why does that go through my head? If I thought she was anywhere close to typical I wouldn’t make drastic life decisions like switching insurances and pulling her out of school for an eval. I don’t know. It’s just sad. Not that she qualifies. She DEFINITELY qualifies…..like even if one were to try and say she was normal…she’s not. That’s how I took it. Is that wrong? I don’t know, probably. I always say though we can’t make ourselves feel any certain way. We feel the way we feel at the time, period, and that’s how I felt. 🙁
The results came this week and she was given a test of visual perception skills that she has been given twice before, once last year, and once a year and a half before, and scored as much as 20 points lower on some subtests. 20 points LOWER?? What is THAT about?
Oh hi there guilt and self-doubt. Shit. We took the summer off of OT. We had some things come up and couldn’t afford therapy, plus we were switching insurances soon anyway. Give her a break…but is that why her scores are low then? Has she regressed? Was she paying attention? I’m failing her. I’m failing her at the one thing she wants to do more than anything now…read and write. The follow up description said children who struggle with this test will struggle with reading and writing. Yep. Definitely my fault. She has regressed on the one thing she practices as much as speech everyday. Writing. I wish I was exaggerating. She steals all my pens and has pads of paper EVERYWHERE. They go to school with her, to bed with her, sheets of paper cover my car, my husband’s truck, she takes them on her backyard swing and they cover the yard, and they are all over my house. How is it she REGRESSED. 🙁 🙁
Then, this weekend we had a birthday celebration for her at my house. Great! I needed an upper! She basically never plays with toys so people bought her clothes and books and cards…which are all things she loves.
My brother and his wife bought her a case of gel pens and my mom stuck in a free pad of paper and some stickers she had received in the mail just to get rid of them along with her gift of lots of clothes.
My niece in Wisconsin Kayla texted and asked me what Ashlynn’s favorite gift was. I looked up to see her case of pens proudly displayed on her kid table in my living room and the free paper sitting next to it coming in a close second to her favorite gift. 
For the first time without prompting, her independent scribbles on the paper had actual words: “Mommy” and “Dad.”
As proud as I was, it’s not right. It’s not right her favorite gift is a pen and paper so she can learn to write. It’s not right that she knows she has to work everywhere everyday, and practice 1000x harder. I’m the one crying though, not her. I’m the one that thinks it’s not fair, but to her, this is just her life as she knows it. Ignorance is bliss…isn’t that what they say? Is that a good thing?
Jace will be in Kindergarten next year. He’s crazy smart with no glaring motor issues. Can you believe we have only barely attempted to try and get him to write? I know the reason, and my husband does to but neither of us will say it loud.
Will that kill her to see him write? She’s already watched him whiz past her getting dressed, feeding himself, showering himself, doing whatever it is by himself.
We know Jace will get it. We don’t need him to be a prodigy, but could he be a prodigy if we worked with him more? ahhhh. It’s so much. Where the hell is the parenting manual? I need it! I would actually read it! Instead I feel like I’m never doing enough for either of them. This feeling will pass….I know it will….as I said though, feelings are feelings and they are what they are. This is what they are right now.
It’s dyspraxia awareness week in the UK. That’s because dyspraxia isn’t as well known or researched here in the U.S. I guess what I want to say, is though I am sad, I am strong. I will NEVER stop. I will accept this step back and I will step the freak over it with Ashlynn’s hand in my hand. We’re going to help her. We’re going to meet her where she is at, but we are never EVER going to give up, and I won’t stop because one day, when she is older, I want to look her in the eye and confidently say I did EVERYTHING I could…and mean it. 