Autism but not

So through out our time with Jazz, we have had numerous diagnoses get tossed around.  Traumatic Brain Injury (TBI) has been the ultimate conclusion and all other diagnoses she has are related to the fact that she has a severe TBI.  One diagnosis that was tossed around numerous times by doctors and what people assume when they talk with her for a few minutes is Autism.  The unfortunate truth is that as a family, we have all come to resent Autism and the amount of attention it receives, and since she does not have autism she gets left of of many services she may qualify for.  There are times I wonder what diagnoses these Autism parents must have since they have created such a hype of attention for Autism and have been able to now create "the spectrum" in which nearly every person can fit on, but I digress.

I thought today would be a fun time to share some of our stories that have made us laugh and in the end say, well there's the "autism" again (in a joking manner since she has never been autistic)...

Jazz has always been picky about food, as my "Pickles" story illustrates.  She will go through food trends and phases in which she will only eat those foods for a while and then never eat them again, or will eat them again but years later.  During these trends she will typically only have about 5 foods, a joy as you can imagine...  We recently discovered though that she has now adopted a an odd pattern of only eating certain foods at Dad's house and certain foods at Mom's house.  She will throw a fit and have a meltdown if you mention PB&J (a fav. for a while) at mom's house.  However, I have watched her eat an entire one at dad's house without the slightest bit of fuss.  This type of food aversion is a common struggle for children with autism, and apparently TBI as well.

She will only wear soft textures, since she has aversions to certain textures.  We always dreaded taking her to department stores or anywhere with clothes, because even if she was in a stroller she would reach out and touch every piece of fabric she went by and often times wipe her face on them.  After we realized that she was trying to seek out certain textures, we started to only buy those certain fabrics in certain cuts.  AND we now find ourselves touching every piece of fabric in every store as we walk by.  Tactile sensory aversions and seekings are common in autistic children and TBI as well.  And given how much time we spend doing this now, it is contagious.

When she becomes overwhelmed or wants something she cant find she will frequently flap, hug herself, or rock herself repeating what she wants over and over and over and over and over....  When this happens in public, we get the looks like oh poor people having to deal with such a sick autistic baby... This just ticks us off because she is NOT autistic!

By the way, don't look at families like that, it is demeaning and makes them feel worse.  Instead, smile and ask if they need help.  And never talk over the person with the disability.  Talk to them.  It really makes their day because they rarely have people look them in the eye and want to talk to them.

The point of my post today was to tell a couple funny stories.  Seriously, imagine a group of adults running around a store touching every piece of fabric, and parents planning meals with completely different shopping lists, laughing is the only way to not go crazy.  But also, to encourage advocacy for TBI and the unique journey involved.  Pediatric TBI frequently gets overshadowed, ignored, and denied supports because another campaign was louder at the crucial decision making moment.

Check out these events in CA.  We will be attending one for Jazz this year.  Please join us when the time comes!
http://biacal.donordrive.com/index.cfm?fuseaction=donorDrive.eventGroup&eventGroupID=89A3A3AE-C292-13D6-017D80AE057EDD18

Much Love!