"Bleck"

This week has been a tough week for me as far as Alex goes.  Nothing really out of the ordinary happened this week but sometimes I see her in certain situations and the reality of her disabilities become painfully obvious.  I don't live with my head in the sand, I know how severe her disabilities are, but normally I can see past all of that and just focus on just how far she has come without wanting to have a complete meltdown.  Not this week for some reason.    For one thing her drooling is out of control, and honestly, I hate it.  I can't stand that she's always soaking wet, I can't stand that it makes her stink, I can't stand that her bedding is constantly needing changing because it's always soaked, I can't stand that 10 minutes after a shower she has spit in her hair, I can't stand that I have to change her pajamas twice before she falls asleep because they're soaked, I can't stand that we have to do laundry every single night because of all of her bandannas and clothes, and speaking of bandannas, I can't stand that she has to wear those to draw even more attention to herself.  I h.a.t.e. everything about it and I feel like it's getting more and more intense.  We've tried medicines to dry it up and they don't work for her.  She's also seeking a ton of sensory input lately and I'm frustrated because I'm obviously not giving her what she needs.  We met with a new occupational therapist that we're going to start seeing every other week next week and I'm hopeful she's going to be able to help me combat a lot of that.  When Alex is sensory seeking she bites herself - a LOT, she pulls her hair, she rocks and she yells, really, really loud.  What parent wants to see their child doing those things?  Most kids in wheelchairs have vestibular motion issues - vestibular motion is the sensory system that provides motion, a sense of balance and spatial orientation, they don't get vestibular motion sitting in a wheel chair.  Your vestibular system controls so many aspects of your body and it can wreak havoc when it's not functioning properly.  In Alex's case, because she lacks it, car rides and that sense of motion push her over the edge.   She gets so excited when you put her in the car she chokes herself with putting her hands in her mouth, sometimes she will literally have both hands shoved in there, she pulls her hair, she flings drool everywhere and she screams albeit, happily, but screaming nonetheless on the top of her lungs. We took video of her in the car yesterday to show to her speech therapist and she put it in a little bit of perspective - she said Alex going on a car ride is like us going to Bush Garden's and getting on an intense roller coaster.  When you 're on a roller coaster, you yell and scream, you smile, you get amped up - same sensation for Alex.  We need to incorporate more vestibular motion into her sensory "diet" so the car ride isn't the only time she's getting that sensation.  If you rode the same roller coaster over and over and over again, eventually it wouldn't have the same effect on you.  Same concept.  Only when I hear that, I think there are SO many things we already have to incorporate into her day, physical therapy, feeding therapy, speech therapy, cognitive therapy, blah, blah, blah - it's overwhelming sometimes and I just want her to be able to just be a kid and to have a say in what she WANTS to do, what she WANTS to wear, where she WANTS to go. 

Alex should be the poster child for speech therapy - she loves it.  She can be having the most horrible day and she pulls it completely together for speech.  We call her therapist the Alex Whisperer, she is so calm and engaged it's like watching a different child.  She loves her oral motor exercises and she gets so excited when her therapist pulls out her tools.  If her therapist has a tool in her hand but stops to explain something to me Alex will reach for her hand and pull the tool to her mouth.  In speech we are working on her saying the "MMMM" sound and we use these shapes to help with her apraxia.   

The blue square is used to make the mmm sound and there are so many things that go into making a sound.  The position of your mouth has to be just right, you have to pull your voice from your throat, your breathing changes, yadda yadda....it is a true job for Alex to put her lips together AND make the sound at the same time.  But she WANTS to and she tries so hard.  Her therapist said to her yesterday "I know you are trying so hard Alex, you're doing a great job. I can't imagine how hard it must be to know what you want to say and not be able to do it ".  And there it was, that one statement that made the tears well up and that gave me a really good cry later that night.  To see her try so hard and struggle, to want to be able to do it, and to not be able to is crushing.  What is she thinking when we're asking her over and over and over again to do something she's obviously trying to do?  That has got to be so incredibly frustrating.  When we got home from speech yesterday Aaron got her showered and we were both getting her ready for bed.  Aaron said to me "I just need to cut her fingernails" and Alex started sobbing.  It wasn't a hurt cry, it wasn't a frustrated cry, it was a real good cathartic sob.  I honestly feel like she had been trying to hold everything together and between all the work she did at school, speech, her sensory issues that day, she just couldn't take another thing, she was done.  The fingernails were put on hold, she got some apparently much needed loving and it was lights out.  And she s-l-e-p-t.

I really didn't intend for this to be a Debbie Downer post, writing for me is very therapeutic so just putting it all out there can make me feel better.  So if you're still reading after all of my whining, thanks for listening!  I will be fine and she will be fine.  At the end of the day, no matter what, drool and all, we will continue to do everything in our power to give her the best life she can possibly have and it's not always going to be sunshine and roses, life never is!