Autism: The One Truth That Matters

autism sparkles-25

My youngest child, the little wild man that lives in my house, just flew past me like a blur as he headed out the garage door and into the garage with the door slamming behind him. It’s Saturday, we’re still in jammies and I have no idea where he is going and at such speed.  At this point in my parenting life, I’m good with not knowing.  I have come to terms with that and don’t even feel a need to yell after him asking him what he is doing. I am content with my lack of knowledge.

I used to think I knew a lot, that I could be considered a relatively smart person, but kids come along and they have this not so gentle way of reminding me that, in the big picture, I know nothing.  My extremely intelligent 15 year old has clearly schooled me in how much I don’t know because when she asked me to quiz her in chemistry, I truly did my best.  I tried to test her on her chemistry homework and, well…let’s just say, it doesn’t go very well when you can’t even begin to pronounce the words…much less determine the right or wrongness of it all.  Science and math have never been my happy place.  I’d honestly choose child birth over word problems because at least child birth ends.  The torture of word problems never really leaves me.  That is largely why I have my first degree in history and a second in American Studies.   Very little math required.

The very first time I learned how much I don’t know was shortly after autism fell onto my proverbial plate.   I think it was announced to the universe, on that exact day he was diagnosed, that this mom clearly knows nothing….n-o-t-h-i-n-g, nada, zip, zilcho.  He went on to have four more evaluations and four more diagnosis’ so I am going to assume it was announced to the universe a few more times after that as well.  Repetition just makes it clearer I suppose.  I thought I was pretty comfortable with my lack of knowledge, despite my dual degrees from the university and another two teaching credentials, but I will tell you it has surprised even me that the more I learn, the less I know.  Despite all the book learning I have paid for, I still know very little.

I was reminded of my lack of intelligence when I stepped into my first credentialing class for special ed.  I had no idea that despite my decade of autism trench work, I’d need to learn a second language.  There is the whole other secret language the educational establishment keeps to themselves in order to describe and manage the educational experience of the kiddos in need of extra help.  Even after ten years in the trenches with autism, I found it mind boggling that I knew none of the secret words and understood less of their secret academic-acronym-ish language.  I knew what they were talking about, I actually had trench experience doing it day in and day out, but I did not have the catch phrases in my vocabulary like the instructors and other students.  And, I might add, parents of autistic kiddos were not consulted when the secret language was created because, if we had been, it would have been simpler.   After a few weeks in classes it actually started to feel like the secret language was created to keep everyone else out of the inner circle and to keep the makers of the secret language in an elite position.

I still don’t understand the need for the secret language other than it keeps the elite in a position of elite-ness and the rest of use confused, excluded and feeling as though we are somehow less because we don’t understand.  Terms like IEP, SAT, ADD, LRE, ED, LD, ABA, FAPE, ABC, ASD, FBA, ADA, LEA, ID, NCLB, CST, DSM, LEP,  ITP and MMR…just to name a few.  It really came to a head when I heard a professor start to teach about ‘backward chaining’.  HUH?  Backward chaining?  I have spent YEARS taking on behaviors and even setting up the behavioral programs for my boy’s teachers and not once had I heard such a word.  The word game the educators play was becoming ridiculous.  It seemed as though they were taking simple concepts and making them unrecognizable to the typical parent who was actually in the trenches and performing the tasks they described with the big words every single day.

It wasn’t long after this I came to start up Autism Sparkles, both the blog and the Facebook page of the same name, and my lack of smarts hit me all over again.  It was here that I came to realize how very much, despite my life as an autism trench veteran,  I still have to learn. Traveling around the streets of the virtual Village of the Wonder Souls, I had neighbors from all walks of life.  Good people.  Hard working people.  Big hearted people.  Smart people.  Different cities, different states, different countries and….different autisms.  As I walked virtually from house to house, as we met in our proverbial street, as I opened my mail box and uncovered new sparkles, I had this humbling moment and I learned the one thing that  I now know for sure.

Though the universe has proven that I know very little, there is this one thing I now know for sure.  It is the only thing I know about autism that is in actual stone.  Crazy as it is and even though many of us autism parents find common ground and sameness in our need to stick together and lend support, autism is still different for each of us.  I have humbly come to see that autism is VAST and the spectrum umbrella is IMMENSE, even endless in its scope and combinations.  Straight autism.  Autism and epilepsy.  Autism and chromosome deletion.  Severe, mild/moderate, high functioning.  The varieties are endless and the combinations intense.  Each and every child under the umbrellas is an original, each one a masterpiece in their own right. You can call it autism, you can warehouse it as a generalized spectrum disorder but, truly, each and every kiddo is marvelously different, unique and profoundly original and each parent paints with different colors on their canvas as they travel their own path that leads to their private destination.

The other thing I know for certain, for sure, for real… and it’s genuinely the only other speck of knowledge the universe has left me with…is that some places on the spectrum are more difficult to navigate than others.  Severe, mild and high functioning are all different states within the country of autism and there are even smaller counties inside each state that bring even more variety.   There can also be some boundary disputes that make the county or state you live an actual gray area but, despite the grayness of some edges, the part that is clearly black and white and outside of the gray zone, is that everyone has a different autism.  And, truth be told, unless you live or have lived in that particular county or that state, you don’t have the authority to talk about any place you have not lived.

The only knowledge I have been left with and the only truth I am certainly sure of  is that you cannot question the places you haven’t lived in, the streets you have not stepped onto and the shoes you haven’t walked in.  It may look similar, it may sound the same but if you have not walked in the shoes and slept in the bed, and ate at their table, you’d do best to keep your thoughts inside your head.  And, as we have come to believe in The Village, finger pointing is considered bad manners in any country so we just don’t go there.

In the land of Autism Sparkles, in the Village of the Wonder Souls, support and love are all we do.   It’s really all we’re good at.  The Sparkle Mommas posted a sign as you enter town reminding all who enter that kindness matters and finger pointing is not okay.  They even posted a few PSAs at the boat launch about stirring the pot just to be safe.  It’s better this way because we can not support one another through the rough spots or look on the brighter side if we have wasted our energy stirring the pot and tearing one another down during the waking hours.  Besides, stirring the pot and finger pointing would only wreck up the late night get togethers when the Wonder Souls meet in the street after the kiddos go to sleep to soothe the souls of friends and make sure everyone has eased their minds enough to rest.

As for the universe, I think it is finally at ease with my lack of knowledge and, out of sheer kindness, has generously left me with the one truth that matters…Stand up, support, love, spread some sparkle and REPEAT.

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