Saturday, April 2, 2011

What Autism Is To Me...

Today, April 2, is World Autism Awareness Day the launch of Autism Awareness Month.  Awareness has come a long way in the last few years which has led to a better general knowledge of the disorder; however, I feel that awareness is merely not enough.  We really and truly need to take the next step and push for acceptance and genuine understanding of those with autism.  To do my part, I am going to try and explain what autism is to me. 
Autism to me is a blessing and a continual challenge.  Autism is a rainbow of abilities and strengths; it’s a kaleidoscope of difficulties and weaknesses.  Autism does not define us but has become and forever will be an intricate part of my family and life. 
Autism is every day, night, week, month and year.  It is with us during meal times when he will only eat from a very strict list of foods.  It is with us when noises that I don’t even hear cause him to cover his ears in distress.  It is with us when he craves sensory input by crashing, tumbling, flipping and jumping.  It is with us when he smiles and laughs for no apparent reason; I love those times.  It’s his fascination with the intricacies of things; he takes in each piece, each part…watching and observing.  It’s the exaggeration of smell, sights, sounds, textures and tastes.  It’s hand flapping and spinning.  It’s taking off running into danger without understanding.  It’s temper tantrums, throwing things; it’s his frustration.  It’s sleepless nights.  It’s the family holiday traditions that I have had to let die.  Autism is constant adjustment and accommodation.       
Autism is routine, everything is carefully planned and executed.  Familiarity is a teasing presence.  Newness spawns chaos and unease. 
Autism is accepting that my son isn’t and won’t be like other boys his age.  He probably won’t play on sports teams or go to sleep overs.  He may or may not go to college or get married or give me grandchildren…and that’s ok (most days).  I just want him to be happy. 
Autism is unconditional never-ending love, a true bond between a parent and child unlike any other.  It’s knowing that your child loves you more than anything even when he can’t yet verbally express that love.
Autism is not taking ANYTHING for granted.  Every single reached milestone and skill is cause for great celebration.   It’s seeing your child make great progress and then witness a regression.  Autism is trying to stay focused on all the positives.
Autism is a rollercoaster of emotions.  It’s an ongoing loop of smiles and struggles, laughter and tears.  It’s fearlessness and helplessness; joyfulness and sadness; loneliness and companionship.
Autism is a battle.  It’s fighting with school administration to get appropriate scientifically based instruction for your child.  It’s struggling to get him the speech, occupational and physical therapy he needs.  It’s being the “squeaky wheel”.   
Autism is worry, the nagging worry of will happen to my little guy when my husband and I can no longer be here to care for him.  It’s all of the “what ifs”, the uncertainties of the future.  Fear of bullying when he goes to school.  Worry about jail when I beat the crap out of said bully(s).   
Last but not least, autism is a teacher.  I have learned so much about my son, myself and those around me.  Autism has revealed to me the dire need for acceptance of those with differences; the profound necessity for parents to teach their children to embrace differences and not judge others.  I once frowned upon parents whose children misbehaved in public; Instead of assuming bad parenting, I now always assume there is some underlying circumstance occurring.  Who am I to judge?  I understand first-hand what it is like to be in public for a sensory overloaded melt down with my son.  I understand the stares and the mumbling under ones breath, the rolling of the eyes and blatantly rude and hateful statements directed at me and my son (THAT HE HEARS TOO).  Autism is not judging a book by its cover.  Being different is just that, different…not negative or less!
In closing, I urge you to not only be aware of what autism is but transcend mere knowledge into understanding and acceptance.  Autism is here and it’s not going anywhere.