Updated: Feb 28, 2019
"The NT peers of my child do not even give my child a chance..."
"My child (autistic) tries to socialize but the other kids do not understand ..."
"She is not angry... she just does not know how to tell you that she knows what you are talking about..."
"Neurotypical kids do not have time to understand my child"
"No ... my child has no friends... "
"We used to have friends, a life till the diagnosis....not anymore ..."
"Maybe its my fault, I did not focus on parenting in the first few months.... "
-- just some of the things that keep playing in loop in every interaction with a Special Needs parent, a parent of a child who is neurodiverse or on the Autism spectrum. Every parent touched by Autism is nodding feverishly to these statements, because as unique and diverse as neurodiversity is, these feelings are all the same to everyone who is part of a neurodiverse family. And, no, it may not always be that they are complaining, it is just a very harsh reality that has become part of their lives. Some blog, some whatsapp, some vent in mommy groups, some others internalize, some steel up and decide to do everything to make their child as "normal" as possible, just focussing on different treatment modalities and homeschooling, sometimes, cutting off everything else to focus on them getting that degree and graduating, because at the end of the day, we are all high achievers and an education/ degree is certain to land you a job which will lead you toward being independent.
Cut to ...
"My son is 28... he's battling severe anxiety and loneliness...he's very well educated, high-functioning you know.. but has no friends... "
"My 34 year old has become manic depressive, and is not able to hold down a job ...even if she has a degree from UC Irvine..."
"Do you not have programs for Adults on the Spectrum ? My daughter is battling depression and suicidal tendencies because she wants a normal life and she doesn't have friends.... she is 26 .. "
"She was doing so great when we were homeschooling... got her diploma, went on to college and .. now she has such aggressive behaviors ... we dont know what to do ..."
--- again, just some of the things that parents of neurodiverse teens/ and adults are all too painfully familiar with inside their circles. It is heartbreaking to hear the pain in the share of a parent who has been doing everything possible to get their child to become independent and then realizes that there is still something broken... but cannot fathom what to do about it.
Being in the Silicon Valley, we are almost all of us, high achievers, best schools, high paying jobs, beautiful houses, stock portfolios, proud of our achievements and then one day, the "diagnosis" ! The "Autism" that explains why our child does not make eye-contact, does not engage with anyone, is so stubborn and self-willed that they are having terrible twos meltdowns when they are six or seven, not learning anything at school, not focused on learning, is unable to sustain a meaningful conversation... that "Autism" that also crippled us, completely paralyzing our future. The first blow is to the Pride of the High Achiever - how can this happen to me ? What did I do wrong ? Eventually, leading to the pride of being a high achiever, that can find a "fix" to this. What we do not realize is the pain we are unleashing upon ourselves and our child in launching upon this eternal quest to "fix" them. Imagine them having to deal with the perception of being "broken" every single day of their lives, by those that they love, those that are the only world that they know. Then there is the issue of the pride, that we know best, that prevents us from reaching out and asking for help from those around us, for fear of the prejudice against being disabled that cripples our social interactions and also takes away the support system that our neurodiverse kids need the most.
"Oh, but that is not our intention, is it - we want our children to be independent, do not want them to get hurt, and do not want to be considered a burden, E-V-E-R !"
Right ! But, in the process, could we have possibly built walls all around ourselves and our neurodiverse child shutting them off from experiencing the world, the different types of people, the different types of real world situations that they would eventually encounter.
"But then, this is for our neurodiverse child, we do not want them to get hurt, neurotypical world will not understand, no really, its not anyone's fault, but they really don't understand our child - see our child is different!"
True ! Our neurodiverse child is different! True, we do not want them to get hurt and True, we want them to be independent - but lets revisit that "neurotypical world will not understand..." part - there is a logical fallacy right there. For what is obvious, is that we are neurotypical, for most part, aren't we ? We understand our neurodiverse child, don't we ? Then, how can we assume that the neurotypical world won't understand.
Therein lies the "PRAGNYA" - the Awakening, The Awareness, the Ah-ha moment that has launched this movement toward Autism Acculturation.
Oh, but what about a neurotypical person who has no connection to Autism; who possibly feels for the neurodiverse community, but do not really know how to help, besides, you have so much going on, that you do not know if you really have the time to acculturate to Autism or become an Ally. How hard is it to be kind ? How much time does it take to have empathy? How much will it cost to just unconditionally accept someone who is different, and not judge them based on their difference ? How hard will it be to acknowledge that just because we do not know much of a different type of person, that it is best to not jump to conclusions about them being any "less" or someone we do not want to spend time "getting to know"? Do we really have to birth someone or be related to someone who is different to care about them ? How are we better than anyone else that gives us the right to judge that we do not have time or inclination to be there for a fellow human being ?
Therein lies the "PRAGNYA" - the Awakening, The Awareness, the Ah-ha moment that has launched this movement toward Autism Acculturation. The movement that brings together neurotypical children and trains them in wisdom skills to become allies for their neurodiverse peers to help acculturate them to mainstream society and the different experiences of learning, playing, dining out, socializing, attending concerts, watching movies, singing, dancing, performing without fear of rejection, retribution or judgement all while being themselves. Unconditional acceptance and relentless loving will help anyone grow and thrive. Besides, at the end of the day, when all is said and done, we want one thing for our child, to love and feel loved - to be happy, neurotypical or neurodiverse !
No amount of degrees, therapies, bank balances can give anyone that sense of fulfillment that a genuine hug, a cheerful smile, an understanding nod, a helping hand, a voice to speak up for them, a kind word can !
PRAGNYA is about awakening the "essential Goodness" within every single one of us and the joy of compassion at work. Whether it is sitting together and learning to write, or to solve complex problems, or just making small talk, or whether it is dancing step to step in sheer abandon, or singing in sync with no care in the world, PRAGNYA Allies and their neurodiverse peers are experiencing the joy of love, the joy of togetherness and the joy of thriving together. Here's to moving away from the annoying "P" words of Pain, Pride and Prejudice and gaining PRAGNYA !