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SLP Mommy of Apraxia: She really does have "special needs."

Wednesday, January 15, 2014

She really does have "special needs."

So, I obviously am well aware my daughter has apraxia.  I'm well aware of her challenges, but for some reason, I didn't want to admit she's "special needs."  I don't know why.  I work with special needs kids all day long.  It's what I do.  I don't see them as special needs.  I just see them as maybe learning differently, or needing different supports than other kids to be successful.  I guess that's why it has taken me until now to admit that yes, my daughter does in fact have special needs.

When she was first diagnosed I was drowning in a sea of sorrow and desperation.  Sorrow because I knew how much more work it would really take her to talk, and desperation because I so desperately wanted to help her and hear her voice, her thoughts, her say, "I love you."  After that though, I picked myself up and took her to endless therapy appointments spending thousands of dollars on her therapy and little by little, her speech improved.  I've been riding a pretty good high for awhile.  She's talking at school, she's speaking in sentences, and for all intents and purposes, she has found her voice! Oh, and now with a neat trick from OT she is putting on her coat BY HERSELF and is able to get her shoes and socks on without help.  I see the light at the end of the tunnel!

Until about a month ago.  It's one thing to be told you're daughter will be sitting in a cube chair and has a weighted lap blanket to help keep her focused.  It's another to see her with those accommodations in the classroom.  She was happy though and if it was helping her, well ok.  Then at teacher conference, the teacher told me she needed us to work on Ashlynn's name, or at least get her recognizing the first three letters and being able to put them in order.  Sounds easy right?

Wrong.

She doesn't consistently identify the right letter, even when I only have three in front of her; and I have to keep cueing her to start at the left and put them in order in a linear fashion to the right.  I created a grid with three boxes so she could visually see where the letters fit, and she started to get it a little.  In the bathtub, I would take the foam letters and have her put one on each tile of the wall.  Then the OT started sending home packets.  Ashlynn isn't crossing midline.  She switches hands instead of reaching across her body, and she needs to cross midline to eventually develop hand dominance, and oh yea, to write!  Hmm...I realized she wasn't starting with the left box for the first letter of her name because she wasn't crossing midline.

I know this doesn't seem like a big deal, but now I have to work on getting her to cross midline with various activities, and also work on her name.

Ok, that's cool.  I got this. I'll keep cueing her with the letters and I'll add practicing in the bathtub making sure she crosses midline washing herself, and when I'm working on her brushing her own teeth (which she still can't do well yet)  I'll also remind her to cross midline.  When she's eating dinner, instead of just cueing her EACH time to use her fork (which is hard to use because of her apraxia), I'll also make sure she is crossing midline instead of switching hands.  That while practicing drinking out of a big girl cup and not managing to spill her drink, plate, or drop her fork.  Oh, and when I read her a book at night, while I'm busy reading and then asking questions and making her answer using complete sentences and correcting her articulation, I'll make sure she flips the pages by crossing midline with her right hand and turning the page. Phew.  Yes, I can fit this in though.  I got this.

Then on Monday I get caught by the OT in person.  Ashlynn has very weak upper body strength and she needed me to also do exercises with her to improve it.  I was left with another packet.  My shoulders started feeling a little bit heavier.  It's okay though, I got this.  No problem.  When I work out, I can just have Ashlynn "work out" with me.

Wrong.

She needs max assist to do the exercises. I see the need though as she really is weak and can't even lay on her tummy for more than 30 seconds without fatiguing. Her upper core just isn't there.  Hmm, I wonder if that's why it's hard for her to ride a tricycle, oh crap, I haven't practiced pedaling with her in awhile.  What kid can't ride a bike!  I need to get out there with her.  Oops, I digress.

Oh no!  I just remembered the teacher sent out a newsletter that the kids will be having show and tell every week and Ashlynn's turn is tomorrow.  Crap, how is she going to do show and tell?  Yes, she can talk, but on demand she clams up.  Better email the SLP.  Okay, that's done.  I wrote three questions and practiced them with Ashlynn after dinner.  I sent it with Grandma who drops her off, and then I emailed the SLP who promised to practice with her before it was her turn.  Success!

The next morning I get her ready for school.  She comes out with her coat on upside down and her shoes on the wrong feet.  Sigh.  I haven't worked on her jacket or shoes in awhile....
....and I finally realize.

My daughter has special needs.




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4 Comments:

At January 17, 2014 at 12:42 PM , Anonymous Christi @ Away From The Oven said...

Hang in there. It is all so much. I seriously took for granted how easy everything came to my oldest, and how each and every little thing take so much work with my youngest. We will get there, but it is certainly like climbing a mountain. Some days I feel like I've climbed Everest by the time we leave the house in the morning. Just getting out the darn door! :) You are not alone. :)

 
At January 17, 2014 at 2:07 PM , Blogger Laura Smith said...

Thanks Christi!

 
At January 28, 2014 at 8:14 AM , Anonymous Kate said...

Oh mama. This post breaks my heart....because I know. I really do know. The fear and the worry and weight of all of it is crushing. I always think about how much easier life would be if it was just eating dinner or just taking a bath. Not, teaching and reminding and showing. Sending you hugs and strength!

 
At January 28, 2014 at 12:34 PM , Blogger Laura Smith said...

Thank you Kate! Hugs and strength to you as well!

 

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