Saturday, April 2, 2011

World Autism Awareness Day 2011 - What does this day really mean?

Hello Aspierations Blog Friends!

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.

http://aspierations.blogspot.com/2010/04/autism-does-not-define-me-poem-by-karen.html

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 lettingmylightshine@gmail.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.

HELLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLPPPPPPP!!!!





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!
Karen

10 comments:

  1. For me, Autism Awareness means getting the word out to my family, friends, co-workers, neighbors and anyone who may listen to me on my soapbox that my twins are not to be pitied but to be embraced. That I am not to be shunned. That my children do not need to be seperated from other children in school except for educational assistance and IEP pullouts. That my children do not need to be thrust into crazy sensory filled extended family get-togethers just so that some apathetic relative can feel better about their own fake bonding time.

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  2. I'm glad I found your blog. I enjoyed reading. Thanks!

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  3. Sadly outside the community, I find at best many people fake sympathetic, impossible to be empathetic and unless they have a personal connection to someone with autism, apathetic. Within the community there is passion and compassion. How do we merge the two worlds together or do we?

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  4. Excellent blog Karen. Your book idea sounds wonderful. Have you established a non-profit yet? Maybe that would be a way to do some fundraising outreach to help get book published!

    To all - please do not ever give up hope. Keep trying to merge the communication. Keep trying to work on family communication so that family can have an opportunity to be there. To be a help. To be a support. For all to be open to listening to each other and keep trying. Never to give up, even if it may seem challenging. Don't stop trying. If you hit a brick wall and can't get through, try another way. Maybe around it or over it or get a ladder! It has been my experience that the the love is real, from the heart and true. Not fake. Truely family wants to be there. Wants to help. Love. Support. What that might look like to each person may be different but no less real. Keep trying.If one door shuts, please open another. Oftentimes, we don't realize the importance of family until they are gone. Then it is too late. So my suggestion - never give up hope and keep trying!

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  5. Not for the faint of heartApril 3, 2011 at 1:45 PM

    Thought provoking blog, Karen. Thanks for keeping it real. What Autism awareness means to me is not sugarcoating your life to make it sweeter for others to swallow but not making it sound so bitter that you are without hope, progress or goals.

    Anonymous poster from 1:17 PM: Not sure what your relationship to autism is but it sounds like you're a family member that wants to help and that's splendid. However please understand that for many of us, we may live in families without that extended support. We are misunderstood and shunned. I have tried countless times and continue to try and reach through to stick up for my daughter just to be met with ignorance, apathy and what looks like embarrassment. I have many great relatives but I have others that are very dysfunctional and selfish and untrustworthy. I don't want them or their fake support around my daughter.

    It is a good suggestion to not give up hope and keep trying but at some point you have to say do I really need people in my daughter's life who just cheer at the good things but look the other way when she smears poop on the wall. Who says I'm doing such a good job parenting until my child has a meltdown while they babysit?

    Sadly, some people only want to see the progress with autism. They're afraid of having the bad stuff in "their" family.

    So if you DO have family members that are fake, don't feel obligated to have to make it work. But if you do have someone loving who you reach out to or who reaches out to you, embrace.

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  6. Wow, lots to respond to here!

    Okay, let me give it a go! First, thank you Charlie, Brandi, Anonymous 1, Anonymous 2 and Not for the Faint of Heart for taking the time to read my blog. I appreciate you each taking time from your own busy lives to venture into learning a little more about my world as well as share your own opinions and thoughts about Autism Awareness and generating support from family, friends and strangers.

    Let me think a few minutes as to how I'd like to respond to some of the other comments. I'm tempted to write a blog that just focuses on autism awareness and family support (or lack thereof) but tonight's blog is going to be a list of my own do's and don'ts for potentially helping a family or individual that has autism as a regular part of their lives. I'll be right back! I need a bit of processing time! :-)

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  7. It's me again. (Pretty obvious, right? Yet I say it anyway...)

    It hurts to be shunned. It is painful to see our children disrespected. I am not sure what is worse, ignorance and apathy or empty words of supposed sympathy.

    I have found a lot of togetherness and camaraderie among parents of children with autism and Aspergers when it comes to support meetings. However when it comes to decision-making, where to put funds, how to best advocate for autism awareness politically and socially, I have also seen a lot of divisiveness, especially when certain topics like "cure" come up or which autism related organizations are reputable or which treatments are harmful versus helpful. Some resent stars who have shined a light onto autism, some appreciate and embrace them.

    Just as all members of a political party or a religion or a particular group aren't going to always agree, such is the same within the autism community. It would help when discussions happened if people would come to the table with respect and honor, humility and hope but as people's lives are evolving and changing and each person has his or her own priorities, sometimes just getting to the table together is a challenge.

    Not sure if I'm making sense outside of my own head here...

    When it comes to family... wow... Okay, how many of us live in what we call functional families? Perhaps I need my glasses but I don't see many hands raised. That leaves dysfunctional. That leaves family relationships that are going to be stressed and strained and a lot of charged emotions. That's without autism in the mix.

    I think keeping doors open and trying to forge healthy and stronger bonds with family members can be possible and rewarding but reality shows that it isn't possible in all families with all people. If you have people you can connect with that are sincere about wanting to have a genuine relationship, that's great. It doesn't happen for all of us. John and I both have family members we have reached out to for many years that want nothing or very little to do with us or our children despite us sending pictures, letters or making phone calls. Then there are others who we are in occasional contact with but the trust and bonding connection just isn't there, perhaps due to a history of issues or baggage that is still unresolved. When you grow up in a dysfunctional environment and people say they want to have relationships but they don't want to face, admit to or deal with the dysfunction, it just won't work as any "relationship" will end up being filled with deception and resentment. Having worn a social mask in public many a time, I recognize it among family members being polite to one another but never addressing the white elephant in the room... whatever that elephant might be. I want loving relationships for my kids, my husband and myself, not fake ones where the elephant is ignored.

    Just as most of us have experienced unrequited love at some point in our life and couldn't force someone to like or love us (I'm talking you, 3rd grade crush), such is the same in family. I know it would be nice to believe all family loves and respects each other but it's just not true and if we spend too much time trying to force a square peg into a round hole we're going to miss out on opportunities to form bonds with people that may not be family but we can be just as close with if not closer.

    This should have been a blog...

    Well, it's just my opinion... and with your own life experiences you may have a completely different view.

    Before I keep going down tangent lane, I will end!
    Thanks again for the discourse! Keep it up!

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  8. P.S. To Anonymous who posted regarding the non-profit organization, I appreciate the suggestion and I also respect your enthusiasm for family. It sounds like you have some strong, loving, honest and genuine relationships in your life and I hope your family appreciates you.

    I have only looked into it the idea of a non-profit organization a bit as it seems in order to create a successful non-profit there needs to be people involved who have lots of time to dedicate and people involved who are skilled fund-raisers. I'm not really at that point in my life financially or time-wise where I can do that now but it is definitely something for me to keep in mind for the bigger picture and I will certainly keep my options open! Thanks! :-)

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  9. You should take those answers and repost them in a new blog because you make some very good points. Your writing is very conversational although I would imagine your intelligence might intimidate a few people, LOL. I really also liked your husband's response to my question on his blog too. His merging two worlds blog addressed a lot of concerns and pain of many of us in the community who have children and at times feel like outcasts within our own families. Tell your husband good job and thanks for being a voice of advocacy and support.

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  10. Thank you, Anonymous. I appreciate your compliments and will be sure to pass along your response to John as I know he'll be grateful also. In fact, I'm taking your advice and reposting most of the comments from this blog into a new blog tonight, April 4th. Please check it out! I hope you'll be back to visit our blogs again!

    Karen

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