Tuesday, April 2, 2013

From Machiavelli to Macaroni: The Many Hats We Wear

While I should be using this time to work on my paper on The Prince, I have decided to use these few minutes of quiet to write a post instead.  Maybe it's the two hours of sleep I got last night or perhaps it's the many Facebook posts and media stories drawing attention to autism today, but whatever the cause, my emotions have been worn entirely too close to the surface lately.  I guess I could blame pregnancy for the tears, but sleep deprivation seems a more likely culprit.

In light of World Autism Awareness Day, I will make my small contribution to the public discourse regarding this challenging epidemic.  Our son has not been diagnosed with autism, but that may be because he is only two and we are waiting to have him evaluated.  He has been seen by a multidisciplinary team (a PT, OT, ST and special needs instructor) who concluded that while he showed some delays he was most likely not autistic.  We have discussed his repetitive and compulsive behaviors with his pediatrician who thinks he is just hard headed.  We are seeing an OT who thinks he exhibits many classic autistic behaviors, but has such good social and communication skills that she doubts he falls on the autism spectrum and she believes most of his issues are sensory based.  He sees a behavioral therapist who has performed two screens (both came back calling for further evaluation and put him on the autism spectrum with very high functioning) and thinks he exhibits autistic behaviors, but agrees that additional screenings after he turns three would be more beneficial than evaluation right now.  A lot of mixed messages that leave us scratching our heads and constantly wondering if we are doing the right thing by him.

All of the personal stories of autism posted today hit just a little too close to home.  The fear of public outing meltdowns resonates loudly and is the reason for a long time we made minimal attempts to shop or eat out with the boys.  There was a story on CNN today about a little girl with autism and her "broken cheeseburger" that made me cry and laugh.  Regardless of whether our son has autism, SPD, special needs, or is just wired differently, his bad days have really opened my eyes to the need for understanding when we see families out in public.  Whether it is throwing furniture because I left the room or bashing his head into the floor at school when another child is being scolded, most of his reactions to the world around him seem more like intense overreactions.

I feel like I spend more time researching his condition than I do on school work.  But the reward is so much better than a degree.  This weekend we went to Reptile Gardens and he followed directions so well.  We went out to eat at a sit down restaurant, sat in an area with few other people, and it was a peaceful meal (well as peaceful as it could be with two toddlers!).  I'll spend countless hours working toward using a new cup or teaching him to self-feed macaroni, but the payoff is amazing and I love it when he succeeds at something new.  It has been an adventure, living with a two year old that can recognize and name all of his letters, all of his numbers, all of his shapes, all of his colors, but who I am having to teach to play with and accept touching stuffed animals.

I guess the point of my post today is that all of us, as families and individuals, have more on our plate than meets the eye.  So if your instinct is to sneer at the parents of the child who pushes his food around his plate at the holiday dinner or to whisper to your spouse when you see a mother dragging her screaming two year old off the floor of the grocery store, stop and consider the possibility of circumstances beyond one's control.  I have heard of making up business cards that describe and explain your child's condition and keeping them on hand to give to rude people that cannot keep their comments to themselves.  I have had a couple situations recently that would warrant a business card blow such as this, but without me having a name or a diagnosis for what ails him, it makes it a little harder.  Instead, I will continue to brush off the negative looks and comments and remain very grateful for helpful strangers who offer a helping hand or words of understanding.

I want to tell you a story...

I want to tell you all a story. It’s about a mom who had two babies 12 months apart. And the second baby was different. He was sad or mad...