Today, April 2nd 2016 is what has come to be known as
WORLD AUTISM AWARENESS DAY.
Today is also the day for the first time since I started blogging or using Social Media to share my families story about our challenges and victories raising Jake that someone was less than supportive in a comment on the thread of a post I shared.
See, there are few things to know about me.
1. I am a woman with no filter and thick skin. I am passionate and love my family and friends.
2. I am an open book. I talk about everything and anything with no hesitation (much to my husbands chagrin)
3. I am open minded and supportive of all sorts of people and their views.
4. I am one of the few people on the internet that seems to be able to continue to scroll if I do not agree with a post rather than get butt hurt over it.
5.I have a POWERFUL network of FaceBook followers and friends.
6. I AM AN INVOLVED AND STERN PARENT THAT HAS NEVER ALLOWED MY SON AND HIS DIAGNOSIS OF AUTISM AND ADHD TO BE A CRUTCH OR AN EXCUSE FOR HIS ACTIONS.
So when I shared a rant about an incident that had occurred at the boy's school on Friday on my FB Blog page (www.facebook.com/amibeinginappropriate) I was taken back by the comment made by a (former) follower. My son was lumped in with what she considers "winy ass cry babies"
(that was her spelling of the term....) and I was lumped in with in her words "parents that blame schools when their there kid is totally in the wrong" (again, an example of her spelling and grammar).
I had a knee jerk reaction and laid down some harsh wording rather than taking the high road and either deleting her comment and blocking her or contacting her privately. I did this because I was angry. It was not my best moment to be sure.
What happened next was even worse in that I discovered that this person not only WORKS with Special needs Children, she also is a parent of a child on the spectrum.
This made my blood boil.
In the past few years I have noticed more and more "in-fighting" within the Autism Community.
I am referring of course to the Vac vs. Anti Vac debates, the "We need acceptance not awareness" argument, the haters of Autism Speaks against the supporters of the organization and the "Light it Up Blue" campaign, the "My kid is MORE autistic than yours because they are non verbal and yours is not" battle,the our kid is on meds people vs. the we would never medicate our kid folks.
I could go on and on but just typing that makes me sick to my stomach and breaks my heart.
Jake is highly verbal. In fact he never (ever) stops talking. Did I mention he NEVER EVER stops? He is incapable of being left alone even at age 15 because he is socially inappropriate and ridiculously impulsive and could be a danger to himself. He has severe food aversions and exists on Ensure, Danimals, French Fries, white Bread and eggs. Jacob was BORN with his autism. He did not regress as many children have. He never met one single developmental milestone on time and began early intervention at 17 months of age. His hair was tested and confirmed to not show Mercury poisoning, He has been on medication for his ADHD/Anxiety/Sleep Disorder since he was 9. He practically potty trained himself at age 3. I choose to "Light it up Blue" and I also read up on holistic and alternative treatments for him. The odds of him ever living independently away from his dad and I are very slim. He is brilliant when it comes to geographical locations - he is like a walking GPS system and he is obsessed with DVD and VHS tapes. Not just to view the movies but to also study the packaging and case to see who the distribution and production company are. He knows more about film origins and actors than any other person I know. However, he cannot complete math beyond a 3rd grade level - he is in 9th grade. He cannot peddle a bicycle, he is extremely sensitive to sound (which is odd because HE IS THE LOUDEST PERSON ON THE PLANET) and he needs constant reminders to tie his shoes, brush his teeth, wear pants etc.
Autism is not a competition that we have entered into like a marathon. I should not have to justify his autism to another parent of an autistic child. We should just support and respect one another. We are all in this together. If your kid is 17, non verbal and in diapers he is NO MORE AUTISTIC than Jacob is. Jake has no interest in video games and does not flap his hands in excitement but that does not make him less autistic than your kid who loves Minecraft or can do college level math at age 7. If your child regressed after vaccinations or is like Jake and was born this way we are ALL in the same boat.
I am begging members of the autism community to stop the crazy battles and just embrace the differences we all have and face. We are all supposed to be on the same team here. WHY are we attacking one another and where is the compassion and support we all deserve? No two autistic people are alike so therefore the root cause and treatment will not be either.
NOT a single one of us - mother, father, brother, sister, cousin, aunt, uncle, grandparent OR CHILD asked for Autism to be part of their life but for 1 in 68 of us that is exactly what we got.
Let's not make things harder for any of us by judging, hating and battling. Let's just focus on our kids.
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| My family - LOVES, ACCEPTS AND IS VERY AWARE. (Jake with his parents, Grandmothers and Siblings) |
