Saturday, April 9, 2016

We are All In Everyday but Yes Awareness is Key

April is Autism Awareness Month which we here in our family support tremendously as we have three on the spectrum but we also support the awareness months for Epilepsy, Cancer and any other month that includes special needs. However, I am writing as I find myself having a hard time with all the articles that have been coming across my social media new feeds that are written about what makes the families in need or what happened to them during these specific months of awareness.

I guess what I am trying to say is, our household does not change when the awareness month ends, my child or children's life does not change when the month changes the date to the first of the next month. So is thirty days of awareness for any special needs really fair? If I am sounding bitter, my apologies but if someone does not share in the autism diagnosis and they truly want to be educated in the subject they do not need an awareness month find the means. They do not need to wear a certain color on a certain designated day. They just need to learn, to research, to ask questions and they will find themselves wanting to know more.

Sadly, I have found that in my dealings with people who do not have a special needs child, most do not want to know more than they have too. This is not true for all but unless someone has to know the in's and out's of situation or the specifics; the information becomes too cumbersome. I wish I was wrong about that statement but I have not been proven wrong yet in thirteen years.

When our third child received his diagnosis of Autism thirteen years ago, I went into what I call stealth mode (researcher gone wild). I did not even know what the true meaning of autism was nor what really existed for autism. I felt like I was thrown in front of a pack of wolves running for my life while protecting my child. Now, fast-forward to the present, there is so much more available in terms of therapy, intervention, services, assistances, etc. and then some. However, I am still learning, growing and now having three children on the spectrum who all have different degrees of needs, I continue to advocate, ensure services are maintained, therapies of many are continued all the while we all grow on a daily basis working together (some good days and some not so good days). It takes a lot in ways of research, reading, asking questions, sometimes not taking no for an answer and many countless hours of trying to find the right resource. Basically, I am just saying I did not wait for some awareness month. I do understand there is more to the awareness month than just the bells and whistles; it is about raising for the cause. I just believe it should be an every day awareness for us just as my disability is for me. Whereas I do not change during CRPS awareness month and make different choices or wear a designated color. My disability is 365 days a year, I support it 24/7 just as I support my children's needs the same. I stress our awareness is daily when we laugh, cry, giggle, disagree and support one another, it is every minute, every day!

With Autism having the numbers and statistics as follows, does an awareness month have any justice only being thirty days? My belief the below numbers should be represented more than one awareness month!!!

Autism Occurs (as follows)
  • New Prevalence Numbers for 2014: 1 in 45 US Children have Autism. November 13, 2015
  • Revised Estimates of the Cost of the Autism Epidemic (July 2015)
  • New Rate of Autism 1 in 68 (March 2014)
  • The complete CDC report “Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010” dated March 28, 2014
  • New Parent survey shows autism affects 1 in every 50 U.S. children. Will this new number be used by the CDC? (March 2013)
  • Pediatrics Reports— One in 91 Children in the United States Has Autism (October 2009)
  • CDC: One in 110 American Children has Autism (December 2009)
  • AUTISM OCCURRENCE: One in every 68 children in the US has autism (read CDC March 2014 Study). It is estimated that almost 2 million individuals in the U.S. has autism. (Note: This number and the following statistics below do NOT include: PDD, Asperger’s and other spectrum disorders.) These statistics are endorsed by the Centers for Disease Control and Prevention (CDC), American Academy of Pediatrics, and other federal agencies.
Nobody know what life will throw their way until it happens, everyone has inner strength in them that comes deep within. Sometimes easier to find, but that inner strength finds the way with advocating, finding the means, protecting your loved ones and fighting for what is right. Most importantly the love that shines through, whether it is in a first word heard, a goal met, a milestone succeeded, it is a journey that so often taken for granted where others celebrate with the most joy. To this be your child's voice....

“What does it mean to be an advocate?
In its broadest sense, advocacy means “any public action to support and recommend a cause, policy or practice.” That covers a lot of public actions, from displaying
 a bumper sticker to sounding off with a bullhorn. But whether the action is slapping something on the back of a car or speaking in front of millions, every act of advocacy involves making some kind of public statement, one that says, “I support this.” Advocacy is a communicative act. Advocacy is also a persuasive act. “I support this” is usually followed by another statement (sometimes only implied): “...and you should, too.” Advocacy not only means endorsing a cause or idea, but recommending, promoting, defending, or arguing for it.”
― John Capecci and Timothy Cage, Living Proof: Telling Your Story to Make a Difference

In the short of it...

Until Next Time...Make It A Great Day!

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