Sunday, May 29, 2011

Sacred space, sacred time

When I'm wallowing in my deepest funk, everything about my life looks and feels like Hell.  Hardly anything can penetrate the despair that envelopes me.  Let's face it, when autism sucks, it SUCKS.  It can be ever present, ever incapacitating, ever stressful, ever sad.  Of course, yes, there are interesting, fascinating, and even fun aspects of autism but not enough to compensate for the overwhelming impact it has on the entire family.

Now, when I refer to autism sucking I'm not saying that my children suck.  I love, adore and live for my children.  Even when I'm outwardly mad at them for acting autistic (as if they have a choice!), I know that it's not their fault.  They didn't ask for the neuro-developmental slap in the face.  They didn't ask to struggle every day with anxiety, frustration, and confusion.  They had as much choice in being autistic as my husband and I had in having children born with autism. 

When I'm having a dark day and I feel like I can barely keep going, I have to make a choice:  do I resign myself to this feeling of despair and sadness, or do I get off my figurative butt and shake off the sense of powerlessness?  I'm fortunate that I was born with a stubborn resolve to be happy.  I cannot tolerate being sad so I do everything I can to make bad situations better.  Like anyone, though, life slaps me around and I find myself cowering, afraid to respond to what she has given me.  It is in those moments, that I find myself craving the sacred, the divine.

As I've mentioned before, I'm not Christian.  I have had the fortune of being exposed to a variety of faiths and I find that all faiths are filled with divinity.  I think for those of who feel the need for the sacred, we know where to find that sense in our self, that connection to the divine even if you don't believe in God per se.  I find that when I'm at my lowest, I retreat within myself and search for that peace, that love and acceptance which restores me.

Of course, I'm not suggesting anything new by saying that it's good to relax and reflect when times are tough.  The trick when raising children on the spectrum is finding a way to access that when melt downs are occurring, when the house may be filthy, when they are repeating themselves over and over, when you simply can't get away.  I can't help but recall a funny quote I read on a coffee cup the other day which stated, "If by 'happy' you mean trapped with no means to escape. . . ?  then yes, I'm happy."  It's during those moments when you know what you need to feel better but you simply can't escape to do it that the need for a sacred space and sacred time is essential.

By a fluke, my little monkeys did me a favor when they misbehaved several weeks ago.  My twins were having a blast in the bathtub downstairs.  We were nearby and could hear their squeals of laughter so we weren't concerned about their safety or anything.  Then we heard a loud bang.  Nothing like those lovely moments of racing to find out what has happened now.  Apparently, the boys thought throwing a cup full of water high up in the air was hilarious until it hit a light bulb above the sink and subsequently knocked out the power in the bathroom. 

We debated about calling in an electrician.  We ended up putting it off long enough that I had an idea.  I would make this bathroom OUR (my husband and my) bathroom and we would only use candles in it or would just enjoy the sun streaming through the window.  Over time, I've been slowly making this bathroom our own by placing candles and natural oils in it, by stocking it with lovely soaps that smell heavenly, and so forth.  Every day, when I take a shower, I light all the candles and make time to find comfort in this short ritual.  Even on days when I'm not really into it, I go through the motions of lighting the candles and, once finished, pausing to find my inner strength before blowing out each candle.  It won't make the bad days go away.  It may not even keep me from falling into states of sadness but the act of intentionally making time to nurture myself despite the stress is very restorative and often helps me to remember that I'm part of this whole equation, that there is more to me than being the parent of children, on and off the spectrum. 

I'm working on finding other opportunities to find the sacred throughout my day.  From listening to music that stirs my soul to reading quotes that make me feel strong, I'm making the conscious decision to make those moments occur because they are important, because I am important.  I hope you may also find such rituals and moments to nurture yourself.

Friday, May 13, 2011

A powerful lesson for neurotypicals (NTs)

Last night, autism has taught me yet again that my neurotypical (NT) viewpoint is limited and that there is an endless amount of wisdom to be learned from those with autism.  In 100 cities at 7:30 p.m last night, the exceptional movie, Wretches & Jabberers, was played, and I was fortunate enough to be able to see the movie.  If I had my way, I would want the film be made available throughout the country and the world.  As the number of those directly or indirectly affected by autism continues to increase, it is of paramount importance that films such as this be shown.  

The film documents the advocacy efforts of two autistic men, Tracy Thresher, 42, and Larry Bissonnette, 52, who travel to Sri Lanka, Japan and Finland to show the world that their outward appearance and behaviors mask the true intelligence and competence hidden within “the beast” as they often refer to autism.  With the help of keyboards and assistive technology, Tracy, Larry and fellow autistics who they meet during their travels, not only communicate their thoughts effectively but in a manner which can only be described as poetic and profound.  

Flapping, shrieking and making frequent unintelligible sounds, both men exhibited the signs of what is viewed as severe autism.  By the unaware NT world, they would be viewed as mentally handicapped and learning disabled.  Society would not expect much from them based purely on their outward appearance.   Wretches & Jabberers forces the NT viewers to realize what an incredible disservice it is for those of us who can verbalize our feelings, who can behave “typically”, to believe that those such as Tracy and Larry are nothing more than poor souls who are barely capable of daily living.  

Traveling across the globe, meeting with students and speaking at conferences, Tracy and Larry speak unflinchingly about how difficult it is to be trapped in such a state, being judged as unintelligent but being unable to communicate that they knew exactly what was going on around them.  Even as a parent of autistic children, both of whom are verbal, my eyes were opened by how truly the same we all are.   What may seem like profound differences between NTs and autistics is blurred and challenged with each question Larry, Tracy and the other autistic persons answered and each thought which they shared.  

What I find myself further awed by is that Larry and Tracy never showed resentment or anger toward those who misinterpreted (or continue to misinterpret) them.  I find it difficult to imagine that they don’t have those emotions but, in their tireless effort to advocate for the autism community, they present their world to the NT world in a manner which is positive, often humorous, truly beautiful and forgiving.  I can’t help but feel fortunate and encouraged that we may be able to expand this opportunity to connect with our fellow humans who have been dealt a difficult card with autism via the help of assistive technology.  I can’t help but feel deep regret and remorse for those who, in the past, were severely underestimated and mistreated and for those who currently are trapped in a world without speech and who are judged ignorantly by those who deem themselves to be superior in knowledge and abilities.

I truly appreciate those who have made this film possible and for opening my eyes yet again to the beauty often hidden within our fellow humans affected by autism.  In tribute to two very brave men, I am sending a toast out to Larry (who loves beer too) and Tracy.  As the parent of children who are often misinterpreted, I am truly grateful that they have shared their message with the world.

Sunday, May 8, 2011

The cloud evaporated me and then rained me

Off and on over the last few weeks, I have been reading Charles Hart's Without Reason: A Family Copes With 2 Generations of Autism.  As the subtitle suggests, Charles Hart provides details regarding his life growing up with an autistic brother and, later, raising a child with autism.  Not only does Hart provide an historical perspective of the changing attitudes about and treatments for autism over several decades but he also provides insight into his own understanding of autism as a younger brother of a severely autistic man as well as the father of a son who is autistic.  Not only have I found the book to be informative and insightful, Hart's frankness and honesty is reassuring and comforting.  Although my children are higher functioning in some regards than his brother and son, I can relate to many feelings and situations he describes and Hart provides a perspective that I find quite interesting and thought provoking.  I don't typically dog ear books but, looking at the book now, I see that I may need to consider having a highlighter handy while reading it. 

Unexpectedly, Hart's book is helping me cope with my own feelings about raising two children with autism as well as raising a typical child.  One thing that I have struggled with since my boys were diagnosed is allowing myself to process the difficult emotions.  When I feel grief creeping up on me, I try to redirect my thoughts.  When I feel envy of others whose children are typical, I find myself avoiding their company.  When I want to simply cry because my children seem so much more vulnerable and misunderstood, I swallow it because it is too much to bear.  When I'm sad for my typical son whose life is so affected by his brothers, I suck it up and give him more and more hugs.  For some reason, Hart's book has broken down some of my defenses and allowed my emotions to break through.  As we sat at McDonald's tonight celebrating Mother's Day (because that's one of the few places we can take our kids to eat), my husband and I laughed at how empty McDonald's was.  Apparently, McDs isn't the Mother's Day hot spot. 

I was secretly glad that it was rather empty, though, as my sweet, oldest son jumped around and cornered the few children who were there.  Repeating the same script each time, he approached them and said, "Hi.  I'm (name).  What's your name?"  Sounds perfectly civil but to young children, his proximity to them, his mannerisms and his almost aggressive presentation baffled them.  Some would answer but wander off.  I appreciated those children far more than the ones (I am thinking of a girl in particular) who simply looked at him then turned their head as if he wasn't worth talking to.

My sweet son who wants friends but does not have the social understanding to make them continued to make efforts and even believed that he was making friends.  I can be thankful for his not understanding how the children were responding to him.  In some ways, I hope he doesn't lose that because I would hate for him to feel rejected.  Unfortunately, he needs to understand people in order to make friends so, in order for him to improve, he will have to experience this pain that I already feel so acutely for him.

As I watched my son, I found myself choked up.  I love all my children.  Each is so special to me.  Right now, though, my oldest seems the most vulnerable and "different" so, although I don't love him more than my other darlings, I can't help but want to shelter him, protect him and force others to see his beauty.  I know the world may not welcome him as I think he should be but I'm pretty damned determined to do my best to help him.

As I reflect on his disability (which I'm coming to grips with each day), I can't help but think of his amazing abilities.  He sees the world in a way that I can't fathom.  Although he experiences deep sadness and anxiety, he also experiences love and beauty in a way that I could only hope to experience myself.  I often am amazed and baffled by the things he says.  Sometimes, he'll say things that I can't understand at all.  Other times, I am just in awe.  My Mom sent me an email he had sent her today and, as odd and somewhat nonsensical as it is, I found it to be poetic and beautiful.  Here is my son's email:
" i  went outside and the cloud evaporated me, and rained me, i went right thru a transformers book and landed at sari's house." 
This was written by my 6 year old without my knowledge, influence or assistance and I find it very moving.  After reading it, I found myself repeating the phrase "the cloud evaporated me, and rained me" and found it to be so beautiful.  In a way, I feel that my son has evaporated me and rained me by changing me so drastically since his birth and, although, it has been difficult, he has released parts of me which I hope will help nourish he and his brothers and to influence the larger community to better understand and accept all these beautiful souls.
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