Tuesday, April 7, 2009

Autism Speaks and So Do I

I've spent alot of time devoting my blog space
to the Joys of Spring and the Enchantments of Easter


Bunnies... Chicks... Children... Flowers...
All Lovely in their own right... Enjoyed by all

Now the time is past due to devote some attention to
April ~
National Autism Awareness Month

I can only hope 'n pray that just one person will read
this and come away with something new learned...
with Hope for a loved one with Autism...
with renewed Faith in the Lord...
an added bonus would be if more than one person finds
and reads this, and comes away with those things as well...

There's not a short-cut to discuss Autism that I'm aware of...
Valuable Links are always available on my sidebar...
I cannot encourage you enough to visit them...

For those who may be new to my blog,
and wondering what my stake is in all of this...
allow me to explain...

My youngest son has Autism... he was diagnosed at the age of two, and he is now 18... I suppose you could say that I've been around the block a few times with this... Though I "knew" very early on in his life that "something was not right", hearing the final, confirmed diagnosis was nothing short of being physically assaulted... I felt as though I'd been punched in the gut, slapped across my face, and kicked to the ground... I was sick... physically and emotionally... It's truly a horrid blow for a Parent to have to take...

Your entire life, as you once knew it, is gone in a flash... suddenly you're thrown onto a new path in life, and without much information in hand, you're sent off on this new and frightening journey... I lost track a long time ago of how many different Doctors we saw, of how many trips to the Hospitals we made, of how many prayers were said, of how much money slipped through our hands like sand... Truth be known, I'm glad I lost track...

I found a wonderful school for Autistic children and my son attended for six years, beginning at the ripe age of not quite two and a half years... His progress was nothing short of an amazing miracle in our eyes... he eventually transitioned to the public schools where we live, attended regular classes with special acommodations, graduated with honors, and is attending College now...

Trust me, I'm fully aware that what has taken place with my son is not what "normally" happens with an Autistic child... we feel beyond blessed by God for all of our son's progress and achievements... we are over-the-moon with pride for all of the extremely hard work that our son has done...
Sadly, this is not the case with most children that have Autism...
the statistics and facts are simply staggering...
The odds of being diagnosed with Autism are 1 in 150...

But, what is Autism? Autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a "spectrum disorder" that affects individuals differently and to varying degrees. There is no known single cause for Autism, but increased awareness and funding can help families today.

The prevalence of Autism has risen greatly since the 1990's... the spotlight shown on Autism as a result of the prevalence increase opens opportunities for the nation to consider how to serve these families facing a lifetime of supports for their children.

Currently, Autism Society of America estimates that the lifetime cost of caring for a child with autism ranges from $3.5 million to $5 million, and that the United States is facing almost $90 billion annually in costs for autism (this figure includes research, insurance costs and non-covered expenses, Medicaid waivers for autism, educational spending, housing, transportation, employment, in addition to related therapeutic services and caregiver costs). ~points up to my comment about money slipping through our hands like sand~

When we first began our relationship with the special school, we joined the Parent Support Group and attended weekly meetings... one of the first things we were told by the Staff was to buckle our seatbelts tightly, that it was going to be a bumpy ride... we were also told that this journey was either going to "make us or break us" as a married couple... we couldn't wrap our minds around that concept, having only been married for three years at the time... at the end of our six years with that support group, we were the only married couple left from our original group... next month we will celebrate our 20th Anniversary... Thank You, God...

April 2, 2009 was World Autism Awareness Day... I know I'm late with sharing this, and for that I'm very sorry... However, there remains a wealth of information to be learned at their website, and truly the day was a kick-off for the entire month of April for awareness...

Please read this open letter from President Obama, released April 2, 2009, celebrating World Autism Awareness Day... just click on it to enlarge...

As I pointed out, families with a loved one that has Autism are faced with unbelievable medical bills... Since there's always been a cloak of mystery around this disorder, there's also been a large amount of reluctance to recognize all of the needs that go along with it... Currently there is Legislation waiting to be passed to change this reluctance... Autism Treatment Acceleration Act of 2009 - Federal Autism Insurance Reform (S. 819) ... If passed, one of the 12 Sections of this Act will require all insurance companies across the country to provide coverage for evidence-based, medically-necessary Autism treatments and therapies. In most states, insurers are currently allowed to specifically exclude coverage for these critical services, which can cost upward of $50,000 a year – well beyond the means of most families.

There is not a cure for Autism...
It is, however, "treatable"...
Children do not "outgrow" Autism...
but studies show that early diagnosis and intervention
lead to significantly improved outcomes.

Please learn and know the signs of Autism...
Early Identification Can Change Lives!

Here are some of the signs to look for in the children in your lives...
Insistence on sameness; resistance to change
Lack of or delay in spoken language
Difficulty in expressing needs, using gestures or pointing instead of words
Repeating words or phrases in place of normal, responsive language
Laughing (and/or crying) for no apparent reason; showing distress for reasons not apparent to others
Preference to being alone; aloof manner
Tantrums
Difficulty in mixing with others
Not wanting to cuddle or be cuddled
Little or no eye contact
Unresponsive to normal teaching methods
Sustained odd play
Spinning objects
Obsessive attachment to objects
Apparent over-sensitivity or under-sensitivity to pain
No real fears of danger
Noticeable physical over-activity or extreme under-activity
Uneven gross/fine motor skills
Non-responsive to verbal cues; acts as if deaf, although hearing tests in normal range

Autistic children do grow up and become Autistic adults... they need to transition into the adult world and we need to do all we can to make their transition successuful... the majority of Autistic persons remain impaired in their ability to communicate and socialize.
I encourage everyone to be an Advocate for the person you love with Autism.

It's not always easy to share about how Autism has affected my life, my son's life, my family's life... I've barely scratched the surface, here, with information... Autism is an extremely complex disorder... The journey has been long and hard... through the tears and terribly difficult moments, we've also laughed and loved, and above all, we've found many beautiful blessings along the way... It's my belief that my son carries a Message of Hope to all that know him... It's my prayer that by reading this, you've felt that Ray of Hope shine down upon your heart 'n soul...

God bless...

Until another time... Pearl

Information found at
Autism Speaks, Autism Society of America, Autism Research Institute

9 comments:

Linda said...

Thank you for posting this. My son has a friend who is autistic. He is a delightful child who has quite an imagination. My son has never treated him different, never mistreated him, nor would he ever. Even when the other kids do. Perhaps, this is why they get along so well. Blessings

Twyla and Lindsey said...

My heart goes out to you and your family. You are an inspiration. Thank you for spreading the word, I had no idea April was Autistic Awareness Month. Blessings to you. Twyla

Tracie~MyPetiteMaison said...

Hi Pearl,
What a wonderful post and chocked full of information for all. What a great mom/human being you are to give so selflessly. Proud to call you friend, sweetie!
xo~Tracie

Lori said...

Pearl, Kudos to you today! My 23 year old wasn't diagnoised till 13. I as you said too knew there was something going on! It took years and doctors to finally learn. And yes, it was a blow! We have had such a journey. Andrew always went to publis schools and id graduate, however he has several learning disablities and sadly none of the colleges are able to fully or willingly wanting to assist himwhich breaks both of our hearts. I have not started your creation dear, but have neither forgotten either. Although...I've thought of something just today I may try!! Please havea blessed Easter my wonderful friend! Love to you, Lori

Kathi said...

Thank you Pearl, for sharing about your son's autism and for informing me about this condition. I'm sorry for all you have gone through. It must have been very hard and still is. I have a cousin who has a son with autism. I remember at our family reunion 25 years ago, seeing her son in the high chair. He was about six months old. He had a glazed look in his eyes and would not give us eye contact. It was so sad to see him and to see his parents, who knew "something" was wrong, but didn't know what it was. Their son did go to public school, and did work for a bakery for awhile. Their lives have been blessed by their son, through the tears, as yours has. I truly hope for more research to find a cure. Hugs, Kathi

Queenie's Vintage Finds and Treasures said...

Hey Pearl,
Thank you for sharing you and your families life...and being an advocate for Autism, and educating others about it. Your son is a miracle and such a ray of hope to others. I know you are so proud of him. I'll tell you that When I did hair in the beauty shop, I used to cut a little girl's hair who had autism. I often think of her, and wonder how she's doing. She had the most beautiful long red hair and was the sweetest girl. I hope and pray she's doing well. God Bless You and your family Pearl~
Big Hug,
Queenie~

Queenie's Vintage Finds and Treasures said...

God Bless all of those effected by Autism~

Beth Niquette said...

Thank you for posting this--my son is also autistic. He is a wonderful young man, who loves to tell stories, and is one of the most creative people I've ever known. I'm married to a man who is also probably mildly autistic.

I fell in love with him, because he saw the world more differently than anyone I'd ever met.

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