(Note from Lou: Before there was a "Lou's Land", I used to write in Facebook Notes for my family and friends. It was with their encouragement that I decided to make my thoughts, feelings and observations public. This note was originally written on 04/11/11 and published here when I started my blog on 05/28/11.)
I thought I would write a quick note since it is Autism Awareness Month.
The most draining situation a parent of a child with Autism faces is not the day to day interactions with the child, but rather the re-living and re-telling of your child’s condition when you apply for new services or get a new specialist. You get bombarded with the same questions over and over… Does your child talk? Does your child play with other kids? Can your child do this, that, the other thing? Can your child perform any miracles?
You get the point. It is annoying. I understand the reasoning behind it. You can’t take your child to a new doctor or therapist and expect them to know all about your kid and his/her personal quirks. I often say that the reason it is called the Autism Spectrum is because the symptoms vary so greatly, that not one Autistic person has the exact same type of Autism as another. Autistic children are like snowflakes, each one is unique and carries with it unique beauty, characteristics, and complexities.
My daughter Bianca is going to be entering kindergarten next year and the time has come for yet another evaluation. This time her evaluation will result in how she is placed within the school system. Will she be able to go to a regular kindergarten class? Will she be able to go to a special needs kindergarten? Will she have to go to a school with only kids with special needs? I don’t know. What I do know is that the portion of the evaluation I had to fill out was tedious, depressing, confusing, and irritating.
One form contained 124 questions and asked me to rate each question on a scale of 1-7, a “1” meant you never witnessed this particular behavior, and a “7” meant that you witnessed the behavior more times in a day than you could count. The parent was then supposed to add up the numbers and cross-reference some stupid chart. Another BOOKLET had 11 PAGES of yes and no questions. By the time I finished answering all of these questions and filling out all the paperwork, I felt woozy. I could have sworn I just battled Apollo Creed. I was a beaten man. All I saw were pages of negativity all in preparation for an impending judgment by some group of people that don’t know my daughter.
Does your child play with other children? No
Can your child point to three body parts when asked? No
Can your child eat using utensils? No
Is your child potty trained? No
Does your child talk? No
Can your child draw an “X”? No
How about instead of asking me what my kid can’t do, you ask me about what my child can do? Herein lays one of the many challenges facing a parent of an Autistic child. It is rare for somebody to ask what your child CAN do. Above all things, parents like to boast about their child’s accomplishments. When my daughter that is not Autistic sings a song, or learns a dance, or builds something I tell my parents, or post it on Facebook proudly sharing the GENIUS that is singing a crappy Justin Bieber song at age 4. To a certain degree I am able to do that with Bianca as well, but not in the education system. Not in anything institutionalized. All they seem to want to know about are limitations.
Do you want to know what Bianca is capable of? She can make the darkest days seem bright with a mere hug. She can make you double over laughing with her contagious laugh. She can make you feel like you are the most loved human being on the planet and can melt you with her smile. Bianca can amaze you with her memory, her problem solving, her ability to speak in two languages and her fearless conquering of a playground. My daughter has the amazing ability to give life meaning and make you appreciate all you have.
My daughter can do many things, just not anything I am asked about on these stupid forms.
If you have not already, please take time to watch my videos, "Fixing" Autism and Autism Awareness with Nichole337 and share them with your friends.