Thursday, March 29, 2012

Light It Up Blue

If you are a parent with a child that has Autism, you have been asked, "But what IS Autism?" The definition of Autism is longer than any person asking that question is willing to listen to. It is a question that many parents have rehearsed and condensed down into a very short explanation, one that works for their child or their situation. I usually base my explanation on who is asking, what the context is, how long I have to answer and if I think they really want an answer or they are just trying to figure out why he is not "normal."

To simplify, think of Autism like a rainbow. Every child with Autism is somewhere within that rainbow spectrum and no two children typically have the same symptoms or the same behaviors. They are their own little hue on that spectrum. 

Along the spectrum, children can be given different official diagnoses: 
  • Pervasive Development Disorder Not Otherwise Specified (PDD-NOS) - This is a less formal way of saying not as severe autism. My son does not have this diagnosis, so I am not as familiar with this, but I can imagine the frustration that this diagnosis might bring to a parent. I do not know how much insurance or schools honor this diagnosis...if you are a parent of a child with this diagnosis, let me know so I have that knowledge!
  • Rett Syndrome - This is a rare genetic disorder that occurs only in girls. So far, it is the only one of the autistic disorders that can be medically diagnosed. Girls with Rett Syndrome may have severe challenges with communication and it can profoundly impact their ability to use their hands usefully.
  • Severe Autism - Sometimes called profound autism, or classic autism, or low-functioning autism. People with this diagnosis are often non-verbal and intellectually disabled and may have very challenging behaviors.
  • Asperger's Syndrome - also called high-functioning autism. This is what my son has so this is the type of Autism that I know the most about! With this diagnosis, children usually have normal speech development, but have issues with social development, personality characteristics, and communication. They are often very intelligent but "quirky."
April is Autism Awareness Month and I am planning to write a post every day to help spread awareness for Autism. To help prepare, I wanted to share that April 2, is Light It Up Blue for World Autism Awareness Day. Autism Speaks and Home Depot are partnering up for the second year to shine a light on Autism by selling blue Defiant LED lanterns and blue lightbulbs. A portion of each sale will go to fund research, advocacy, family services, and awareness for families struggling with this disorder through Autism Speaks. The lightbulbs sell for $1.99 and $1 from each purchase, up to $200,000 will go to Autism Speaks. The Defiant LED Lanterns retail at $14.88 and $1 of each, up to $45,000 will go to Autism Speaks. The lantern alternates from white to blue when illuminated.

Last year, the Light It Up Blue Campaign had the support of over 2,000 buildings and landmarks around the world that were illuminated in blue the evenings of April 1 and 2 in an effort to shine light on the growing public health crisis of Autism and Autism Awareness. Please check out Light it Up Blue and see what you can do in your community to help spread Autism Awareness.


2 comments:

  1. I am with you sister! My daughter has Tuberous Sclerosis (no one has ever heard of it.) Hell I can't even spell it right sometimes. I get tired of explaining it to people.

    It has been linked to Autism. In fact, instead of giving the long explanation of what my daughter has, I usually say she is Autistic.

    I am sure this is scary to hear, but describing my daughter as Autistic leads to less questions and explaining.

    I look forward to reading your posts during April. If you want to guest post on my blog, I would love to have you.

    We moms need to stick together, especially those with special children. :)

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    1. We have to stick together because no one else understands us! ;-) How about I'll write a guest post for you about autism and you write a guest post for me about your daughter...I would love to hear how you deal with things. No matter what special needs a child might have, we all have the same issues as mom as far as just trying to take care of our children and wanting people to treat them like they should be treated!

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