Thank you for sharing these words Mara LaViola.... Those close to us hear us say some of these words, but I think hearing them from others gives added meaning and makes us at least feel were not just making it up.... It.Is.Hard. It is NOT a blessing to have a child so severely affected as so many are, as my son is medically and at times behaviorally. It is horrific. And for me, if not for my HOPEISM in God and the NDCQ mentality -- it would be life-stealing. Thank you Mara - for speaking words Ive felt but couldnt share like you have. _____________ From Mara: I cannot say it enough. I hate autism - I mean I REALLY hate autism. Do not come after me those of you that espouse the autism is a freakin blessing ideology because your autism is not the same autism that envelops, encapsulates, and isolates my child from the rest of the world and which causes him to behave in ways I could never have imagined until I began living this nightmare. If disability is to be respected and embraced then there has to be a place at the table for the types of autism that are not uniquely beautiful or quirky, delightful and unusually funny. There is a type of autism that is dark and which insidiously robs the personhood that exists deep inside some of these children. It is as if they are entombed in a dark, deeply frightening place that erodes the joy, health, and calm that comes with a peaceful coexistence between body and mind. It is a kind of autism that no one wants to speak of or hear. Those fortunate enough to have family and friends that can be a kind of first responder in ways and provide brief reprieves are few and far between. But for many of us whose autism robbed them not only of their child, but family and friends so many years ago, are fighting battles that I am too frightened to put into words and which there are rarely true breaks that offer any brief moments of peace. As the cohort of children that initiated this epidemic of environmentally injured children age - and whose only crime was to inherit a fragile vulnerability to environmental insults - society is going to have to find a way of addressing them and their families. We do not even have the lexicon to even begin to describe the experiences, feelings, and thoughts to accurately convey the convoluted, contorted and deeply emotional turmoil, love, and sorrow experienced by those of us who have tried so hard but did not achieve the same level of success we had so hoped for or witnessed in others. There is no jealousy of those who have been able to overcome the tortuous aspects of this disorder just a longing for the same good fortune for the many that were left behind to wade our way through paths only few have traveled thus far. Thats why we need safety - both physical and emotional - so that we can be heard, our children seen for what they should have been, what they are deep down beyond the trenches of their tortured souls and not by what the overt manifestations of autism alone reveals. Families need a place to go - to mourn the loss they are reliving since diagnosis and the hope of recovery seemed to be real and attainable. We need a societal dialogue that will embrace, shield and shelter the families and children who are suffering the insidious type of autism that chisels away more and more of the person that is.. That was... The families that are desperately trying to remain intact but whose constellation may have to inevitably change because day to day life poses too many risks and challenges. I do not know how or if I can safely articulate better, state, or share any more ... There needs to be compassionate voices to receive our message when we have the courage to step out ... Until then - those of us living this life will simply have to stay strong to fight another day- moment by moment Do not know if I should share -- but someone needs to bear witness to what is bubbling just below the surface for so many.
Posted on: Fri, 24 Oct 2014 03:17:29 +0000
Trending Topics
Recently Viewed Topics
© 2015