Avery Grace

Avery Grace

Wednesday, April 24, 2013


Inhale.  Exhale.  Inhale.  Exhale.  Repeat.

For the sixth time in the last five minutes I have had to remove our dog's nylon bone from Avery's mouth.  I just kicked the dog (and her bones) out of my room.   Miraculously, for about the fifth time in her life, Avery pooped on the potty today.  I have changed her clothes twice due to crappy big kid diapers, and I just finished feeding her dinner and dispensing medications no seven year old should have to take. 

Avery is happy and delightful today, despite a fever of unknown origin that afforded us a rare afternoon to spend together.  It was awesome to share a few moments with my big girl.  We no longer have a full time (or even part time for that matter) caregiver for the girls, so we are adjusting to a new way of life, which often includes drop-in daycare for the little girls so I can work while Avery is busy in therapy. 

Oddly, I work with children with special needs.  Mostly Autism.  So almost every moment of my every waking breath is spent with someone who needs extra care.  Extra support.  And Extra time to learn even the most basic human development. 

The kids I work with are as varied as any two kids.  Some are non-verbal, like Avery, and some just struggle with anxiety or social thinking.  On Sunday, I completed my graduate course at UNT.  I received my masters degree 11 years ago, but am now back in school for a new certification to allow me to bill insurance while treating kids in whatever way they need... using floortime methods, RDI methods (both I have been previously certified in) or ABA methods... which certainly have their place when teaching life skills to a kiddo like mine.  If you know what the hell I am talking about, you probably have or work with children with Autism.  If you don't know what I am talking about, then let me just say that there are several teaching methods, each with strengths and weaknesses, that address the many needs of Autism and related disorders.  To be an effective therapist, I wanted to understand and study three of the most popular. 

For thirteen years I have been learning about, and working hands on with children who have Autism Spectrum Disorders.  Thirteen years.  My daughter, who at 19 months was diagnosed with severe Autism (over five years ago) has been my greatest teacher.  Mostly because her progress, or lack thereof, and her M A N Y medical issues and diagnoses' that have left me flabbergasted, despondent, heartbroken, courageous, enlightened, and stronger than I ever imagined I could be.  In addition to  mastocytosis, autism, and apraxia, her newest diagnoses include epilepsy and atypical Rett Syndrome.  The combination is mind boggling.  And horrifying. 

I'm not seeking pity, or anything really, I just want my loved ones to know why there are times I may be kinda bitchy, over emotional, under emotional, why I hide in the pantry and eat...or whatever.  There are times I want to move to a remote island with my husband and kids and live a "new normal" since it seems our life is so far from typical.  Lately, I have been a little more anxious than I should be, and I am working hard to adjust my way of thinking to be more present, more grateful and more authentic. 

Trying to find a "purpose" when you are dealt a hand like mine is pretty easy.  I am lucky my purpose is such a sweet, easy going, lovely, little disabled seven year old. Sure, our life is a different kind of "hard,"  but isn't everyone's?  Every single person I know has a story.  Just about EVERYONE has overcome something. The thing that makes our story different, or a "different kind of hard" is it's persistence.  Our "hard" will last a lifetime.  Hopefully.  I hope and pray that Avery outlives me, and if she does, I am working my ass off to make sure I am equipped to handle the challenges that are sure to come about.  It is ALWAYS something.  Just this past weekend our handyman friend had to come over to put a plexiglass casing around our shower knob so that Avery will stop yanking on it and scalding herself.  "Averyproofing" alone has been such a challenge.  Imagine a 4 and a half foot tall 9 month old.  

I feel lucky to have discovered such a relevant passion, long before I even had a personal reason.  Call it fate, or preparation... I was on a path to become Avery's mom.  I struggle with faith, but can clearly see that all of my life prepared me to be the parent Avery needs me to be.  So today, unlike some of my harder days, I can choose to be grateful.  To be aware and active in my "purpose,"  and to see my life and my children as true blessings.  Just as they are.  Am I likely to return to sadness tomorrow.... probably.... but for this moment, I am absolutely full of grace, joy and hope.