Jubilee Project, Fireflies

According the the CDC:

“March 29, 2012 — One in every 88 U.S. children — and one in 54 boys — has autism, the CDC now estimates.”

Recognizing and diagnosing Autism spectrum disorders has come so far in the last twenty years, as well as treatment.  Treatment is costly and labor intensive, and many families struggle to find a way to pay for it, or to manage it themselves.  It is a complex situation fraught with difficulties, strong emotions and a component of fear.

Dr. Lovaas, who pioneered ABA Therapy for autistic children once said that there was no way to predict outcomes for children with Spectrum disorders.  A mildly affected individual might have years of therapy to no effect, while someone severely affected could go on to be indistinguishable from his normally developing peers.  For me this added an element of anxiety, because I saw it as a crapshoot.  Coupled together with the expense, it seemed liked playing the lottery with very poor odds.

But I knew I had to do whatever it took, and so for four years we ate, breathed and slept ABA therapy.  I didn’t care how weird we looked at the store when my kids thought every vegetable was a tomato, and when strangers asked how old they were and they responded with, “Fine,” I ignored the peculiar looks.  I developed a nearly impervious shell that allowed me to reject what anyone thought of me or my kids.  I was pretty hard on them, demanding performance until they got it right.  And I was driven by a deep fear, and an inability to face what might lie ahead.  I don’t know if I did the right thing.  I don’t know if they really understand why I was harder on them then their older brother.  I thought if they never forgave me, it would be a small price to pay for doing what I thought was in their best interest.

But we have a long way to come in understanding autism.  Only 50% of all diagnosed cases have a attributable cause, leaving 50% without reason for the disorder.  Better understanding will lead to better treatment methods, and acceptance by society as a whole.

The Jubilee Project is an organization that makes short videos for a good cause.  A perusal of their sight shows videos on sex trafficking, coming of age, love and of course, autism, known as Fireflies.  Please take a moment to watch the video below for a moment in the life of a young autistic girl.

This entry was posted in autism, Beauty, children, communicating, daily post, faith, Family, Fireflies, Health, Inspirational, parenting, Post of the Day, postaday, The Jubilee Project and tagged , , , , . Bookmark the permalink.

18 Responses to Jubilee Project, Fireflies

  1. Wonderful video!!!! Thank you, Arnel. :-)

  2. seventhvoice says:

    Great post and brilliant video clip. Here’s looking forward to the day when Autism Awareness is a given and not a fight within our society.

  3. robincoyle says:

    What a sweet video. Brought a tear to my eye. Thank you for sharing it. I’m proud of how brave you are.

    • Aw, thanks Robin. I’m sure 13 years ago those would precisely be the words used to describe me. Mean, tyrant, unrelenting come to mind. :-) But I do LOVE my boys…

      • robincoyle says:

        Mean? Tyrant? I think not. Impossible.

      • I wish it were so, but… A good example is when a therapist showed up, spent about 30 minutes with Buzzard, then came into the kitchen announcing he couldn’t work because he had a bad cold. I ordered them back to the workroom. I think he was about three then. I’m sure she thought I was the meanest mom on the face of the earth. Oh well….(Big sigh)

  4. terry1954 says:

    I m glad u have stood your ground in what you believe, no matter what others thought

  5. Loved the video. So effective in communicating something so powerful. Thank you for pointing the way to this.

  6. You’re a ‘mother bear’ teaching and protecting her ‘cubs’….I admire your tenacity….Diane

    • Thanks Diane. It’s weird how being a mom can be the most effective way to get us to stand up for what is right, and ignore the naysayers. Didn’t really possess that before. :-) Merry Christmas!

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