We don't use that word

Turning 3 is a big deal when you have a child with a disability.  The state of California will begin funding for school and services when they turn 3, literally, the day they turn 3.  We had to wait till December 10th and on that day, Caden began pre-school.  

The school year started at the end of August.  Kyle, my oldest was in his last year there.  I would volunteer in his class, and was so distracted with observing the “aide” in the room.  I knew they were a one on one for a specific kid or two who had IEP’s.  I had no idea what to expect when Caden would begin school.  He was going to be thrown in as a “new kid” half way through the year.  A new teacher, a new environment and plenty of new procedures and rules to follow and learn.  I had this IEP in place.  Who knew a 20 page set of goals could make me an emotional mess.  The goals they set for him for the next six months gave me hope that he could possibly obtain them.  It also made me sad and it was so clear the defaciets and areas he needed to work on.

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Because the families in our town seem to be very tight lipped about any “label” that might be placed on their child, I had few moms to connect with.  As I sat one day in Kyle’s class for a mom’s morning, I was excited to see the mom of one of the boys in the class who had an aide…  I knew the boy was autistic, and to others it was pretty obvious he had struggles.. I knew the mom casually and was dying to talk to her, and learn of what I was about to encounter.  We had an opportunity to hang out and sit on the carpet with the kids.  Criss cross applesauce, I sat down next to her, and we began to chat.  I forget my exact words, but I know they were delicate and heartfelt.  I mentioned that I had a son who would be starting school in December with and IEP, and he too was autistic.  I came from a place of a mother desperate for another mom, like me, to tell me it was going to be okay.  That Caden was going to be in the best hands and the teachers and staff are amazing and wonderful and kind here.  She looked at me … I felt like she sucked the air out of my body and I was left in a panic.  “We don’t use that word” is all she said.  In the few moments, that felt like forever, I sat confused and almost found what she said laughable.  We don’t use that word… hmmm… why?  Is it a bad word?  If that is the diagnosis that was given to your child, why do you automatically make that word negative?   I understand in our little bubble here, and in our bigger world around us, for the majority of the uneducated, would view it as negative.  For me, if being Autistic is negative, that means my child is bad.  I wanted to ask her … is your child bad… like a rotten apple you are going to toss in the trash?  Nobody wants to have their child labeled, judged or less than.  A label is a sticker that can be torn off, and like a shiny silver can underneath… there is beauty.  You do not know what is inside the can until you open it up to see the yummy goodness.  This woman began explaining to me why they don’t use that word, and that they don’t agree with the diagnosis…  As the Charlie Brown teacher continued to mumble… wha wha wha wha wha… I tuned her out.  All though disappointed that I was not able to connect with this mom, all I could think was how sorry I felt for her, but more so for her son.  With her eyes shut and her mind closed, she is only hurting her son but not allowing him to grow with all the opportunity that is at her fingertips to help him.  Diagnosis or not, our kids are who they are.  You can tell yourself or your peers whatever you want to make you feel accepted, to fit in the box, to belong, but if you open your eyes and your heart, you would see that you already do belong, and boxes are dull and brown, and you are accepted by the people who matter.

Angela Wingard