Monday, April 4, 2011

Awareness about Autism Support and what that may look like

Hi Aspierations Friends,

Yesterday my husband at the Life and Times of John Krejcha wrote a thought-provoking blog in support of Autism Awareness month and I think it's definitely worth a read. 

It's called "Merging Two Worlds" and it started initially as a response to a comment that was posted on the blog that John wrote on April 2nd, "What Does Autism Awareness Mean To You?"

The blog visitor shared opinions regarding the lack of support felt from people outside the Autism community . "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?"

This comment as well as some that were posted on my blog, "World Autism Awareness Day - What Does This Day Really Mean?" prompted a passionate discussion between John and myself about what kind of emotional, spiritual, financial and educational support is available to those living with autism in their immediate family.  What is the difference between apathy, sympathy (real and fair-weather) and empathy?  How can we merge the worlds between those in the autism community and those outside?

It's a great read. It is brave, emotionally charged and shows responsibility and passion in advocating for the family impacted by autism. 

I like it when John writes in support of Autism Awareness because he is coming from the perspective of the only person in our family who does not have autism or Asperger's. The vast majority of the time when we go to support groups where both a parent and child in the same family are on the spectrum, the husband is the Aspie and the wife is the NT (neuro-typical).  

He had NO idea what he was getting himself into 18 years ago....

Here are the thoughts that I had posted in the comments section in response to some recent posts I received. A blog reader commented that I should put them into a blog, so here goes...

Comments are in Blue are from various blog visitors responding to the question, "what does autism awareness mean to you?" I am putting them in order because some of the responses references comments from other blog visitors.

From Charlie - 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.

From Anonymous (this was on John's blog too and the inspiration behind John's writing last night) - 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?

From Anonymous # 2To 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!

From Not For The Faint of HeartThought 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.

Here was my response (edited just a tad for relevancy):

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.

A response from an early anonymous poster:

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.

My reply:

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!

If you happen to be a new visitor to my blog or have only been here a few times, this cutting and pasting from other blog posts is not something you will see me do very often, however I think it's important during Autism Awareness month (and every month) to keep the conversation going.

Your opinions are welcome.  I realize that tonight's blog posting style was a bit different than my usual fare.  I also realize I have been pretty heavy, deep and real lately and wanted to let you know that I also have a light side and will be incorporating funny anecdotes from our family into my blog throughout the next few weeks. The kids have been providing some real gems lately and we can all use some levity in our day!

Thanks for stopping by!  Please don't forget to check out John's blog.  I look forward to hearing what you think if you are comfortable sharing!


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