To Tell or Not To Tell

Telling people about my son having autism is a personal, sensitive matter, but should it be?  That is the question....to tell or not to tell.  There are a couple of different ways of looking at it.  One is an approach not to label him and to maintain privacy.  The other approaches the subject as a way of educating the public about autism and how it affects my child. 

The part of me that doesn't want to tell people is the part that still struggles with what is the "right thing" to do.  What is best for my child, public be darned?  Would it be detrimental to him to continually hear the "A" word every time he has a public meltdown?  Will he even notice or care?  Will it help him by educating others or is it a thankless/hopeless task?  My stance is and will always be that he is not his diagnosis, I will say it(an mean it) with my dying breath.  So does telling people go against this, or is it just as simple as helping them understand this ever growing pool of unique superheroes?  As you can see, this side of the argument has many questions. 

The argument to tell, transversely has many statements.  One in 88 children. According to the latest numbers from the CDC, 1 in 54 boys and 1 in 252 girls are affected by autism.  People witness fits in public and see a caregiver administering a hug and getting half beaten to death and they view the child as a spoiled rotten monster.  What they don't see, most times, is a child who's had a meltdown triggered through no fault of their own, who's parent is attempting to give sensory input as a means to calm them and re associate them with their space in the room.  This is no random hug and it's not a hopeless process.  Until people are educated, they simply won't know.

For those of the thought process that knowledge is power.  There is a great tool I found out about called the TACA Autism Card. 

 

FRONT:

My Child's Behavior May Be Disturbing To You.
My Child Is Not Spoiled or Misbehaving.
MY CHILD HAS AUTISM


Almost 2 million children in the US are affected with Autism.
With the CDC now reporting that 1 in 88 children have Autism, someone you know probably has Autism in their family.

Thank You for Your Support & Understanding, and for Being a Friend to a Family with Autism.

BACK:
Autism Is a Devastating Biological and Neurological Disorder that Can Affect Individuals in Different Areas:
1. Troubles with Communication (both verbal and non-verbal, including the possibility of no speech, or appearing deaf)
2. Social and Learning Skills (unable to understand social cues and situations, including waiting in line, or unplanned changes)
3. Strange or Odd Behaviors (such as tantrums, hand flapping, repetitive sounds, yelling out, or obsessive behaviors)
4. Sensory Issues (for example hypersensitive hearing and vision, or aversion to being touched)
5. Medical Problems (including severe headaches, gastro-intestinal problems, severe food allergies and many others)

For information on how you can help families with autism
Please visit www.tacanow.org

 

Only you can decide what is best for your family.  I feel a challenge brewing out there and the Spidermonkey and his band of followers aren't the type to back down.  In the end, I don't think that discretely handing a card to a gawking stranger will cramp my superhero's style.

And Then It Happened...

Photo by:  Ebony Forte Johnson

It was the mother of all meltdowns.  He wasn't tired, he wasn't hungry.  I couldn't blame it on anything other than Autism.  It started with trying to get him out of the car.  He wasn't having it, not any part of it.  After physically taking him out of the car, while his sister was strapped to my chest, then came Christian's Last Stand...or at least it felt like it.  I was excited to get out and shoot a bit with some of my fellow photogs, but he simply wasn't having it.  About halfway down the dirt path to the shoot site, carrying him...with his sister still strapped to me, I realized there probably would be no shooting in the cards for me today, and that was okay.  One of my friends congratulated me on getting out and about, and she was right.  It was good for all of us to be out, Spidermonkey included.  He has done so exceptionally well these past few weeks, it had made the Big "A" diagnosis seem like nothing more than an unpleasant dream.  He's so loving and he's doing so well in therapy, maybe they were wrong.  Maybe, just maybe, I was still a tad in denial.

 

Don't get me wrong, I've worked my tail off trying to make sure I reclaimed my child from any hint of Autism.  However, deep in the recesses, I think I still was trying to "normalize" him.  Today humbled me.  I was torn between keeping him in an environment uncomfortable to him to help him work through the tension and waiving the white flag and letting him have this one.  The little superhero and I found a compromise.  As long as he could stay physically attached to me, he seemed to at least tolerate the visit.  He and his sister swapped fussy periods and eventually, we made our way back to the car with the help of friends.  I didn't take a single photo, and that was okay.  We both needed this day.  I needed the realization of the challenges we will likely face and he needed to be out of his safe little world for a bit.  Of course he wows us all at home, it is his sanctuary of normal.  It is what he is accustomed to.  That isn't where the journey of life ends though.  The true adventure is where life takes us outside of the warmth and safety of home.  It's great to do the hard work at home, but at some point, you have to get out and apply it in the great big world.

 



Photo by:  Vanessa Rogers of ZayMarie Photography

So, along with speech, play and ABA therapy, I'm putting on a cape of my own to embark on real world therapy.  ~cue the supermom music~  Seriously though, I would love for him to share his new found speech with play buddies.  I would be tickled to death to hear him tell a playmate "cookie" or "circle".  I have all of the faith in the world in him.  It may be a struggle of knowing when to hold em and when to fold em, but I think we will do just fine...in time.   ;o)