Tuesday, August 20, 2013

The One About Apraxia: Where We Are Now

This post is inspired by this post by one of my favorite bloggers.  For Paige's full apraxia story in one post, click here.

Paige is now done with Hippotherapy (speech therapy on horses) for the summer.  It was so much fun for her & I noticed it helping her in many ways.  Even if the actual therapy session didn't help her, just how much she loved telling people about it would have helped more than I could have expected.  I loved watching her, too.  I'm so grateful to the people at Resolution Horse Co. that provided that free service & for a friend online telling me about it.  It came at a time that she & I both really needed it.


Because of it's high cost, Paige has gone without speech therapy since January (besides her horse therapy).  She gets some speech therapy in preschool, which I am so grateful for, but it's so minimal compared to the help that she really needs because of the seriousness of Apraxia.   For months I felt so guilty that I didn't have her in therapy.  I saw on an Apraxia Facebook group that many of the parents were taking the summer off for speech therapy.  That gave me a little feeling of relief that Paige was just "taking a break".  Rick & I came across a little bit of money & found a cheaper (& it appears just as good) speech therapist in our area to work with Paige.  The speech therapist has been referred to as the "Apraxia Whisperer" to me by someone I know.  We are excited to be working with her.

Apraxia Awareness Day

Paige was previously "pre-diagnosed" with Apraxia when she was 2 because most speech therapists say you can't officially diagnose them until they are about 3.  At Paige's first appointment with her new speech therapist, the speech therapist did an initial evaluation.  I was slightly nervous for the results, even though she had been pre-diagnosed.  

After she worked with Paige, she told me that she would consider Paige someone with a "classic Apraxia" case.  I asked her how severe she thought it was & she said it was right in the middle of extreme & mild.  I always assumed it was more on the mild side.  

She also said that Paige does have some dyspraxia, which is basically Apraxia for her whole body (as far as I understand it right now...).

I don't know why, but I was surprised at the relief I felt (which I also felt with her pre-diagnosis, only this time I knew more of what Apraxia is).  Although Paige has a long & rough road ahead of her, I'm so glad we have this officially diagnosed & that we have someone working with her again... for now.

Below is a video I took a couple of weeks ago (before we found the books I talk about below) of Paige reading Harold & the Purple Crayon.

Thanks to someone on an Apraxia FB group, we learned about these awesome Speech Box books.  I got them from the library & we instantly noticed a huge difference in her speech.  It was such a big difference that we bought the whole set.  Reading them is now a part of her night time chores she does each night with Rick.

I love that we are seeing improvement in Paige & that other people are noticing it, too.  I'm so proud of her.  She often says things that surprise me & it makes me smile.  At this point, Paige basically tries to say anything & everything.  She loves to repeat us & it's been fun to hear her do that.  This is a huge advantage for her.  Occasionally she'll get sad when I can't understand what she's trying to say, so when that happens we'll stop, say a prayer asking for help understanding each other & then I always instantly know what she's saying.  It's been a kind of fun & neat tradition that we've started.  Even though this journey has been hard, it's been special to us in a way I don't think I could ever explain.  It's our story... & no one else's.  It's one we care about & one our emotions are all tangled up in.

For those of you who don't know, Apraxia is basically a disconnect from Paige's brain to her body (but mostly her mouth).  It is exhausting for us as parents trying to help her & to encourage her to speak all day every day, but I can't even imagine how exhausting it must be for her!


Like I've said before, Paige is a trooper.  She's amazing.  She's always been so patient with herself & others with this trial she has been given.  She's handled it with such a great attitude & she's for sure taught me more than I ever expected to learn from a 3 year old.  I love her so much for that.  


Mindy said...

That was beautiful Michelle! I love getting updates like this. Paige is amazing... so are you and Rick! I love you!

M Brunson said...

Thanks, Sissy! Love you, too! xoxox

DeRosa080208 said...

This makes me happy! Love you guys!