Thursday, March 10, 2011

Autism Awareness / Giveaway I

Part I of the Autism Awareness Giveaway Blog Series

I've been thinking alot about how to approach this massive subject of autism. Frankly, it's daunting. It's such a huge and varied topic. But I'm just going to blog from my heart over the next few weeks and hopefully it will increase your understanding just a little bit. I'm sure that most people reading this have no clue about what autism really is or how it affects people. I know how you feel! And I'll be sharing alot of my personal story throughout these blogs along with the personal stories of some of my friends.

GIVEAWAY - details about the giveaway is at the end of this blog post.

For this first blog, I'll just answer two W's...what and why.

WHAT is autism? I'll use an abbreviated answer from Wikipedia... autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior. These signs all begin before a child is three years old. Autism affects information processing in the brain by altering how nerve cells and their synapses connect and organize; how this occurs is not well understood. It is one of three recognized disorders in the autism spectrum (ASDs), the other two being Asperger syndrome, which lacks delays in cognitive development and language, and Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS), which is diagnosed when the full set of criteria for autism or Asperger syndrome are not met.

Parents usually notice signs in the first two years of their child's life. The signs usually develop gradually, but some autistic children first develop more normally and then regress. Although there is no known cure, early behavioral or cognitive intervention can help autistic children gain self-care, social, and communication skills.

You can read the rest of the Wikipedia description here.

WHY do I want to discuss autism? Because my son was diagnosed with PDD-NOS at age 3. Because when we received this diagnosis, I felt like I had been moved to a colony on Mars and told to start work immediately. I had no idea what it meant or what to do about it. In some ways, I felt relief because we finally had an answer about some of our son's 'quirks' and delays. But the overwhelming sense was fear, confusion, and apprehension. I headed to the library; my favorite source of information!

I had to look around for awhile to find the information about autism. I mean, how many of you could walk into your local library and know right where to go to find the latest books on PDD-NOS? I stood there and actually froze in place. The thought ran through my mind that you could trace my life through the library and the books I've checked out over the years. When I was single, it was novels and the latest bestseller. I got engaged and read through the books about wedding planning, premarital issues, creating a home, being a good wife. I got married and soon gravitated to the shelves holding the baby books, and read through everything from tracking a pregnancy from week to week, to having the childbirth experience I always wanted, to the latest baby names, and then the ones about getting my baby to sleep through the night or how to read to my baby and turn him into a superstar student by age 1. As life progressed I've moved through the library to the books about potty training, child discipline, and homeschooling. Throw in the occasional novel or chicken soup books of emotions, and there's my life. Never had I thought I would need the autism books. And yet, now I stood motionless on dull brown carpet in the muted silence of a Hawaii public library, and faced the books on autism...and cried. Where to start? What to do? What to read? Should I panic? Was God listening? Would Samuel graduate? Would he get a job? Would he know the love of a woman and eventually have kids? Would he understand the abstract concept of grace and the love of God?

Maybe it sounds silly to you. Unless you've been there.

Of course now I know he'll probably be OK. He'll grow and develop and perhaps it will be at a slower pace than others, and maybe his future will be somewhat different than what his parents have imagined, but maybe he'll be perfectly fine and just have minor 'quirks' that follow him in life.

But receiving an autism spectrum disorder diagnosis for your child is breath taking. If you've been there, you know. If you haven't, thank you for reading this, and for trying to understand, just a little. Just knowing that someone cares and is trying to learn more, means so much to the rest of us.

And to provide a wonderful glimpse into the mind of someone with PDD-NOS, I want to finish this blog post with a copy of a recent post from the Autism Speaks blog that I think you'll enjoy...it was a guest post by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a rising senior at Seton Hall University, majoring in Sports Management. He started the club Student Disability Awareness on campus to help spread awareness and raise fund for those affected by autism.

My name is Kerry and I have Pervasive Developmental Disorder - Not Otherwise Specified.
This means I have autism.
This does not mean I am autism.
This means I see the world sometimes in a different light.
This does not mean I'm in the dark.
This means from time to time I may have difficulty expressing my emotions.
This does not mean I don't feel
This means when I do communicate, I do it with a style that is my own.
This does not mean I don't have a voice.
This means I may have sensitivity when it comes to a certain feel or touch.
This means sounds can sometimes make me feel uneasy.
This does not mean I'm deaf or hard of hearing.
This means I can often focus on certain interests for a long period of time.
This does not mean those are my only interests.
This means that I'm the only person in my family to have this.
This does not mean I'm alone.
This means I may have 500 other symptoms/capabilities that are different than yours.
This does not mean I'm any less of a person than you are.
My name is Kerry, and regardless of what PDD-NOS means or doesn't mean, autism can't define me, I define autism. I can only hope those individuals, regardless of being autistic or not can define their journeys in the way they see it.

GIVEAWAY
The giveaway is open to anyone and basically, the more entries you have the better your chances of winning a prize! You can view the prizes in the prize vault here.

How to get entries:
1) Register here. You only have to do this ONCE so if you already have, skip to #2.

2) After reading this blog post, comment below. You can say anything about this blog post, how you felt reading it, something it made you think of, something you learned, etc. Comment once specifically about this post and be sure to leave your name!!

3) Post a link to this blog post on your FB and comment back here that you did.

4) Tweet this and comment back here that you did.

5) Mention this on your own blog and comment back here, with a link to your blog post.

Be sure and watch for the next Autism Awareness / Giveaway blog and more chances to win! Thank you for your interest in spreading education about autism.

25 comments:

  1. What a beautiful way to start this blog series. I'm tearing up reading your story. You are right, ours are very similar. =)
    You, my friend, are a kindred spirit. =)
    I am so thankful that you are doing this. May God bless you in your efforts to spread understanding and awareness!
    Nikki Morris

    ReplyDelete
  2. LOVE IT! I felt the exact same way when my son was diagnosed! He is 13 now and there are still people in my immediate family that don't understand the diagnosis and all it entails! I have also asked myself every question you have! Colin is an only child, so I worry about how he will be when I'm gone! Contact me anytime! We have a lot in common!
    You can find me on facebook tiff767@hotmail.com

    ReplyDelete
  3. I cried reading this. You are an inspiration!

    ReplyDelete
  4. My best friends child is diagnosed PDD-NOS...thanks for putting this info out there. It helps understand what families are going through.

    ReplyDelete
  5. Thanks for sharing.

    ReplyDelete
  6. I've been educated from your post...wow...thank you so much. I've had so many questions, and I want to thank you for answers. Prayers for your family.

    ReplyDelete
  7. Kerry's testimonial is very powerful and moving. How wonderful to take the very elements of a perceived disability and turn that into an empowering anthem!
    sazzyfrazz at gmail dot com

    ReplyDelete
  8. Tweeted:
    http://twitter.com/sazzyfrazzy/status/47867094393569280
    sazzyfrazz at gmail dot com

    ReplyDelete
  9. Posted on FB:
    http://tinyurl.com/5wnl6ot
    sazzyfrazz at gmail dot com

    ReplyDelete
  10. Blogged:
    http://sazzyfrazz.blogspot.com/2011/03/autism-awareness-giveaway-i.html
    sazzyfrazz at gmail dot com

    ReplyDelete
  11. I'm so glad you're doing this. Even though I don't deal with it as you and Elton do, it's nice to be educated on it. And we want to be supportive to you guys no matter what. There will be times in our lives (and already have been) that we'll need your support as well. :) Kenda

    ReplyDelete
  12. What an inspirational story! I think it is great that you are raising awareness. Reading your post brought tears to my eyes.
    nbalogh522 at gmail dot com

    ReplyDelete
  13. tweeted:
    http://twitter.com/#!/maybaby522/status/50346808769134593
    nbalogh522 at gmail dot com

    ReplyDelete
  14. Shared this one on FB as well. :) -Kenda

    ReplyDelete
  15. as i read this i realize more and more that my 3 yr old shows the signs. but my doctor says he is normal and i cant afford to go to another one anytime soon. i really enjoy this post dtristan07@aol.com

    ReplyDelete
  16. posted to fb wall diandra hinson vega dtristan07@aol.com

    ReplyDelete
  17. tweeted diandran26 dtristan07@aol.com

    ReplyDelete
  18. http://diandran26save.blogspot.com/2011/03/rays-of-sunshine-by-soshawna-autism.html?showComment=1300916217957#c4452041238088896103
    blog dtristan07@aol.com

    ReplyDelete
  19. diandra - thank you for your comment and participation! I highly recommend asking your pediatrician for a referral to a child psychologist for autism screening. My pediatrician also thought my son was fine, just maybe a little slower with speech development. But he agreed to refer us to a psychologist and after my son was diagnosed, the pediatrician was surprised that he had missed it. But for your own peace of mind look into it. Also if your child does have some form of autism, the earlier you can get him help, the better chances of actually being able to help him! The older they get, the tougher it is for them to start intervention or therapies.

    ReplyDelete
  20. This hits so close to home. I had many of those same feelings about my kids when they were dx'd.

    ReplyDelete
  21. SoShawna - a great post! I cried when you started talking about being frozen in the library looking at books about autism. Then, Kerry talking about not being defined. I love that! It rings true with the fact that GOD defines us, not other people or their opinions...not even what we think, but HIS WORD. Fantastic. Praying for you and Elton. GOD knows all parents need prayers. :o)

    ReplyDelete
  22. tweeted.......everyone should hear

    ReplyDelete