A LITTLE (much needed) PERSPECTIVE

I was reminded today that  my son’s story is his and his journey through life belongs solely to him. This realization came about while  reading a post written by a hopeful adopter lamenting that maybe just maybe social media is not the place to share the brief story of the child who he desired to make his through the adoption process  and was denied when the child’s mother made the brave decision to take control and parent her child.  He talked about how wrong it was to share…but he did so anyhow. So much for practicing what one preaches.

If I am being honest ..it was not the content, how the post was written or even the story itself that raised my awareness..but rather the comments left by adults whose lives however many years ago were forever altered by the adoption process. The comment section on any post is usually one of the more interesting parts to see..reading the thoughts of others is the ultimate people watching and  it is a reminder that not everyone thinks like you do..not everyone sees the world through your filter..a sobering reminder to be respectful.  Before me were typical comments that had a mix of I am sorry you are going through this, God has another plan for you and this child..to ..sorry not sorry dude this was never your child to begin with, babies belong with their families and not total strangers ..to thank goodness the mother found a way to parent..The comment that struck me like a bolt of lightning had to do with an adopted person saying great and now that you have shared this child’s story without their permission and without the mother’s permission and it was not your story to share.  There in that moment it hit me ..I have shared the boy’s story ..for years..and never once did I ask his permission or think about the consequences of having his diagnosis out on the web to remain for eternity..I try to remain as anonymous as possible ..hoping to share my experiences on this journey over the years..hoping to help another parent see they are not totally alone..but today I ponder ..have I crossed a line that was not mine to cross?

My son absolutely sees his story through his own lens and his own filter..his perspective on what life is like with me absolutely has me in the role of the villain..I have named her the Maniacal Maven (that son of mine has graduated from Xbox One University and is an expert on sociopaths, schizophrenics and brain washers) ..I see my villain as kind of a sexy Bond Film type but the truth is I am more of a 1970s Saturday Morning claymation cartoon type ..you know the one they showed at 6 in the morning before the good stuff came on. My son in his perspective has been held down by the Maven and trapped in this life I forced him into..in some ways he is not wrong. ..

I am trying to find a balance between what is appropriate to share ..his story is part of my story. His issues have affected my family in every way you can imagine ..we are different and we are better because of our challenges along the way..the stories we tell ..well they are funny now. I still have moments when I realize that sharing our experiences definitely can offer a perspective that as difficult and overwhelming as it feels when you are in the thick of a tantrum, showdown or every day moment in life ..someone else has been there and has walked on to the other side. I remember days when I just felt so utterly alone even within my own family..people said it is phase and he will outgrow it..people said my problem was I was not a disciplinarian..no one understood my son’s issues were not then and are not now a phase of bratty behavior ..and for the discipline ..hmm that is a novel all to itself..you name it I tried it..shy of physically assaulting him because I knew a) he was just a frustrated as I was and still am.b) I may be a villain but I like to hold out hope I am not evil and I know discipline is a teachable moment..my son’s wired to react differently than I am ..unless you have walked in my shoes you will not get it.

The question is where to go from here .. I started this blog to keep this odyssey on track and for a space to let even one person know you are not alone …to find the lighter side of what can be daunting.. I wonder if I put my own needs above respecting the boundaries of what is and is not mine to share… perspective would be greatly appreciated

 

My Life through Asperger Colored lenses

I took the plunge today and posted for the first time on BlogHer.com. It was a very scary thing to do and felt like falling off a cliff but I managed to get it done, not well but done. I really enjoy my relative anonymity here with a rather small following but now it is time to take the proverbial leap forward. Who knows if anyone will listen, but I plan to keep plugging away.

No surprises, the boy is my subject of choice. This time I wanted to talk about how it feels being isolated as the parent of a child with Asperger’s syndrome. I know at times I hinted at this here on this blog, and make light of my ups and downs in this life with the boy but I am not sure how to accurately express the loneliness and isolation that often follows this type of diagnosis.

I will be honest and admit that once I was “shunned” or more accurately left behind by parents who were unable to deal with our child’s situation that I became angry and resentful. I know I withdrew further and further away from my community and found life easier as far away from “those people” as possible. I knew then, as I know now that my child is not perfect. In fact the boy is quite difficult to deal with on a minute by minute basis, more so than other kids his age (past and present) but I was angry this was happening to me and my family. I was horrified that people saw us as the family with that “kid” who throws himself on the ground and acts weird. I was really mad when the parents looked at me with pity in their eyes, not quite knowing what to say or do and so they simply walked away or retreated. As a result, we are horribly disconnected from our neighbors and community, we feel as though we do not belong.

There is no turning back the clock, there is no going back, we must move forward and I hope that by sharing my story someday, someone will realize that there is a need for support in families with special needs children. Please do not pity us, but rather befriend us. My wish is for people to realize that while our children are a large part of our story, they are not entirely who we are as people. Count your blessings, for you never know when your own life will cross paths with an autism spectrum disorder. Please, I beg you, never say to the mother of an Asperger’s child “but he looks so normal” or “he will grow out of this” nothing makes us more enraged than those words. Please get to know mothers and fathers of these children, they need friends, they need support (inviting said parents out for coffee means more than you can ever imagine) they need time away from living with Asperger’s Syndrome.