Wednesday, August 27, 2014

I Wouldn't Change Her If I Could - The Biggest Lie I Have Ever Heard

Recently we entered the world of Autistic Spectrum Disorders - Pervasive Developmental Disorder Not Otherwise Specified - to be specific.  PDD-NOS, for short, is one of 3 Autistic Spectrum Disorders.  With PDD-NOS difficulties with communication, social behavior and processing changes in routine are common.  It is common for a child with PDD-NOS to play in a different way, such as placing all of their toys in a line instead of really playing with them.  It is often described as a mild form of autism which is not always correct.  Some symptoms may be milder but others can be more severe.  The world of ASD requires work...and lots of it.  You have to make a routine and you have to stick with it.  You have to try to avoid large crowds and loud noise.  You have to make sure that the favorite blankey is always clean.  If not, you meet Mr. Major Meltdown, it's not pleasant.  He brings with him screaming, kicking, punching and bruises.  High tolerance to pain is common with ASD and the children don't always realize they are hurting themselves during a meltdown.  I'm constantly checking for broken bones and bumps on her head. 

I love Ainsley just the way she is..I couldn't love her any more than I do.  I don't wish she was "normal".  What is normal anyway??  I don't think normal exists..we are all screwed up in our own way and that's what makes us interesting.  Learn to embrace the insanity...I'm still working on this one.  I do wish that Ainsley didn't have PDD-NOS or that there was a treatment that could take away all of her symptoms.  I don't wish this so that my life would be easier.  I wish this so HER life will be easier.  She isn't a bad kid.  She is one of the sweetest kids I have ever but she does miss out on things.  I can't take her to loud, crowded places.  I can't get up one morning and decide to go to the park and break her routine.  I can't enroll her in an activity like dance or cheer.  When I hear parents say "I wouldn't change her if I could" my first thought is always that they are full of it. You don't hear that from parents of kids with cancer, heart disease or any other major illness...why is autism any different? I want her to have the joy of doing the things that all other kids her age get to do, I don't think that makes me a bad person. 

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