With today being World Autism Awareness Day and April being National Autism Awareness month, there is going to be a LOT of talk this month about autism, Asperger's and ASDs (autism spectrum disorders).
You may have even heard the phrase, "light it up blue" or seen pictures of buildings around the world that were lit up blue April 1st and April 2nd. Ryan came to me all excited this morning because he was lighting it up blue with his big blue eyes!
All the information you read, see or hear about autism may become overwhelming to process... especially if you have autism or Asperger's or know someone who does. You may be tempted to ignore it, deny it or become apathetic... although if you're at this blog, that's unlikely.
I've been posting on my Facebook page the past couple of days links related to Autism Awareness and although there have been a number of special people who have shown their love, friendship, kindness and support and have even visited this blog (you know who you are...), it's been oddly quiet with others, especially some that I know are on Facebook regularly and are the commenting, "Like", forwarding type.
My husband John who is blogging at Life and Times of John Krejcha is finding the same thing. Maybe everyone is on Spring Break... or maybe they're just afraid to get involved... maybe they don't know how... maybe they're embarrassed. What do you think?
Have you found missing people from your social circle or if you're kind of quirky like me, your social square? What happens when the topic of Autism Awareness is brought up?
If you're in a similar situation as I am, you may find that some around you will be accepting, curious, compassionate and ask what they can do to help? They may inquire about where they can find educational resources to understand autism and Asperger's better. On the other hand, others (those who you would think would be supportive) may be apathetic, embarrassed, in denial or may appear to go missing off the face of the earth rather than risk running into you for the fear you might try to have a conversation about autism.
As I was pondering what I wanted to write about today, I asked myself what "Autism Awareness" meant to me. I am the mom of two young children on the autism spectrum. I am on the spectrum myself and although I'm adopted and never grew up with my birthfamily, I have met many of them and I'm positive that some of my blood relatives are traveling somewhere along the spectrum as well. The thought that autism may have a genetic component or tends to run in families may bother a lot of people but for me, I have come to accept it and embrace it. I do not want to deny my children the opportunity to know their mother for who she is...
That being said, autism does not define me and it does not define my children. During Autism Awareness month last year, I ended up writing about autism so much that I'll admit it became a special interest and I often felt like I was eating, drinking and sleeping "Autism Awareness". (When I could sleep... sleep issues are a regular and unappreciated part of my life...)
A good hug says "I Love You" even if it can't be verbalized.
This year as I blog throughout the month, you may pick up on that special interest tendency again so I want to say now that there is a difference between being an advocate for autism acceptance and becoming a victim to letting autism take over your life.
If you haven't had the chance to read my poem from last year called "Autism Does Not Define Me", I invite you to do so. Please feel free to pass it along to blogs, Facebook groups, Twitter, autism support groups, etc.
What I'd really like is to be able to turn the poem into a children's book with each page having a line from the poem and a visual representation of children throughout the world with autism. Perhaps you know of someone in the publishing industry who might embrace my vision. If so, please let me know. I can be reached at email@example.com.
So... where do I fit into this month? How about my family? What about my vision for Aspierations? Is Autism Awareness Month about pride? Is it about advocacy? Is it about medical care? Is it about education? A cure? Is someone going to be asking me to reach into my pocketbook and write a check... and if so, where does the money go?
For me, World Autism Awareness Day and National Autism Awareness month is about fostering a climate of acceptance, compassion, understanding and empowerment for those on the spectrum. It's about improving quality of life and giving opportunities and access to quality education and health care.
It's not just about teaching your A, B, Cs. It's about teaching life skills, social skills and emotional coping skills. It's about helping people without autism to understand that autism is a complex neurological disorder that presents differently in boys than in girls, in men than in women, in adults than in children and that when you've met one person with autism and have seen his / her challenges, the next person you may meet with autism might appear completely different.
As I was blog-hopping today and bouncing from one Facebook group to another, it occurred to me that most of the people I saw that were posting were those with children on the spectrum. Parents can be very powerful advocates for their children and quite frankly, they should be!
But Karen... what do I advocate for?
Do I go for the gluten-free, casein-free diet?
Do I try ABA therapy?
Do I try Sensory Integration Therapy? Brushing? Signing? Counseling?
Do I take out a 2nd or 3rd mortgage on my home? Go into debt trying to find "what works"??
How do I tell people... or do I even tell them?
There is so much conflicting information. It is easy to be pulled in so many different directions when you're the parent, family member, friend or caregiver to a child, teen or adult on the autism spectrum.
As I took a walk with my family this evening to the local elementary school where Ryan will be mainstreamed into a Kindergarten classroom next year with learning assistance and pull-outs for a program called SCIP (Social Communication Integration Program), I was hopeful for Ryan's future.
I thought about how Justin just made honor roll in his first year of middle school for the second trimester in a row and had also just achieved the rank of First Class in Boy Scouts. I was hopeful for Justin's future as well.
Then I thought about my own immediate future and I thought I was going to lose it. A great wave of fear washed over me and I fought back tears while watching my boys swing at the playground and get their free sensory therapy for the day.
What if we couldn't afford to live here next week or next month (something we've been struggling with for awhile so this is a realistic fear) and we had to uproot the boys after they had made so much progress? What would we do? Where would we go? What would happen to us?
Promoting autism awareness and acceptance is kind of difficult to do if you don't have security and if your first focusing instincts are on survival...
I tend to work very long hours to try and make ends meet and so does my husband but right now it is not even close to being enough to sustain us. So how will I find time to blog during such an important month? How can I promote and advocate for autism awareness, acceptance and empowerment if I don't even feel I have my own life together?
That's where the title of my blog comes into play and so does my faith. Aspierations... Come As You Are... Let Your Light Shine. Although I still run our doll business, Count Your Beans (we're lighting it up blue at our homepage today) and will continue to do so until a better opportunity is created, I will come as I am... and I will let my light shine even if some days it seems dimmer than others.
I believe that blogging at Aspierations and finding my way here through writing and promoting autism acceptance and empowerment is what I am called to do despite not currently being in a place of financial security. That will come... or maybe it won't... but I will always be an advocate for my children.
Why do I share this? Am I looking for a handout? Not at all... however if you're a philanthropist or venture capitalist and you'd like to invest in the future of Aspierations and a gal who is a passionate, hard-working entrepreneur, feel free to drop me a line! If not, well wishes, prayers and words of encouragement and support are certainly appreciated!
I share this because I know I am not the only one going through daily struggles and maybe by expressing some of my own challenges, imperfections and insecurities in a public forum where almost anyone can see, I might help another person reading this know that he or she isn't alone... and we can make it another day... and we can be positive advocates for our children ... and through our adversities and challenges that we work on overcoming, we can grow stronger.
In order to be the best advocate for my children, I need to make sure to be an advocate for myself.
As I sense this blog is starting to get long and I don't want to lose any readers, I'm going to close tonight's blog entry. Tomorrow's blog is a DO and DON'T list of how you can make a difference helping someone with Autism and / or Asperger's.
As I said above, for me, World Autism Awareness Day and National Autism Awareness month is about fostering a climate of acceptance, compassion, understanding and empowerment for those on the spectrum.
What does Autism Awareness Day / Month / Year / LIFE mean to you? Please feel free to post in the comments section!
I hope you'll come back and I hope you'll share my blog with your friends and associates!
Thanks for stopping by!
Letting My Light Shine!