Pampered, Inspired and Humbled
This is a quick shout out to all the strong, loving, AWEsome moms I met yesterday at the 2014 Day of Pampering at the First United Methodist Church of Mechanicsburg. So many women shared their heartache, their struggles, but, mostly, their joy with me. To quote the beloved Dr. Seuss, my "heart grew three sizes that day". I promised these AWE inspiring moms that I would post the video I shared yesterday since there was a bit of a technical glitch with the audio. I also promised that I would invite everyone in attendance to my house for a glitch free showing along with wine, but, due to my public speaking anxiety, I failed to give the audience my address. I swear, it had nothing to do with my fear of the bill for the wine I would have needed to purchase for these amazing ladies.
I was AWEstruck by your compassion, strength and determination to make sure your intricate, one of a kind snowflake remains visible and that their uniqueness is never lost in the blanket of snow. Remember, even on the days when your snowflake seems invisible to everyone, YOU will always make sure he or she can be seen. "Stand up Mother!" because you are not invisible either. Your child sees you and so does every mother loving their unique snowflake with a "different" ability!
Here is the clip from the Emmys when Temple asked her mother, who believed, "different, not less" to "Stand up mother". Makes me cry EVERY SINGLE TIME.
I would love to tell you that like my son Ryan, I am a non-conformist, a marches to the beat of my own drum kind of individual, but, alas, I am not. I am more of the follow the crowd, jump on the bandwagon, wear the latest trends (then years later, laugh and hide all photos out of shame and horror, or better yet, embarrass my teenage son with my
trendy fashion choices) kind of girl. I'm not proud that I regularly wore an all black "cat suit" unitard with cut off Levi jeans while proudly flouncing my latest spiral perm curls. No, I'm not proud, but I am AWEnest....AWEnest and somewhat ashamed of my "follow the crowd" persona. Although, I can happily report that my black cat suit unitard is retired (unless, of course you count Spanx), I'm still a jump on the bandwagon kind of girl. As an autism mommy blogger, today I sit blogging in my skinny jeans tucked inside my ski boot looking Uggs (both of which I swore I would never wear) and I feel compelled to jump on yet another bandwagon. A bandwagon worth blogging about. If I let this wagon pass, without adding my two cents (really, my two cents are probably only worth about a half pence, which by the way, England stopped making in 1984 because what the heck can half a penny buy anyway....certainly not an all black unitard or a spiral perm) I would become an outcast among all other autism bloggers. Then I would be all alone in my skinny jeans and Ugg boots waiting for the UPS man, or as I like to call him, My BFF, to deliver my new high heeled sneakers from Zappos (I swear, I will never...I hope).
The latest band wagon among the autism community has been to gang up and beat the hell out of the beloved puzzle piece that is Autism Speaks. Wow! The puzzle piece was smashed, stomped, tweeted, blogged and flogged last week. Every blogger, advocate, parent or adult living with autism had something to say...and most of it wasn't pretty. The controversy started after Autism Speaks co-founder Suzanne Wright wrote an editorial on the eve of the first ever "Autism Speaks to Washington" Policy and Action Summit in Washington, DC. Silly, rich, Suzanne used words like "monumental health crisis", "national emergency", "despair", and "not living". Wow Suzanne! I had no idea! As I watched Ryan board the school bus this morning smiling from ear to ear with who knows what going through his head, he did not look like he was in "despair". As I joyfully Christmas shopped for Ryan later that afternoon, I sure felt like I was "living" and not just "existing". Had I only read Suzanne's piece earlier, I may have recognized that my life, and my son's life was verging on a "national emergency".
I am fully aware that autism, or ASD, is a "spectrum disorder", I wonder though if Suzanne and the folks at Autism Speaks know this? They certainly must since they chose the puzzle piece symbol to reflect the mystery and complexity of autism as well as to represent the diversity of each individual affected with an ASD. Autism Speaks is the most recognized autism organization, or charity if you will, with lots of money, lots of celebrities, lots of researchers and lots of media in their corner, so how could they not know that people living with an Autism Spectrum Disorder are as unique as every puzzle piece? And that in order to "solve the puzzle", each piece must be regarded equally. With all the information and all the money that is Autism Speaks, I would think that Autism Speaks must be aware that not all children and adults living with autism feel like a "national emergency", that perhaps maybe folks living with autism think Suzanne and her cronies at Autism Speaks are the cause of the "monumental health crisis".
As a mother of a child with an ASD, I am grateful every day that although autism is a piece of Ryan, there are many more pieces to my AWEsome son, and some days, autism is not the mysterious, doesn't fit puzzle piece, it's just an average corner that completes the entire puzzle. I understand this is not the case for all children and their families, for some, autism is the key piece, however, as an organization designed to advocate and help kids who fall on both ends of the autism spectrum and everywhere in between, words need to be chosen wisely Suzanne. Words need to represent all the people, adults and children, that Autism Speaks claim to support, especially when Autism Speaks professes to be "speaking" for those who can't. This "speaking" must feel like a foreign language to Suzanne and her staff since none of the people Autism "Speaks" for can be found on any of the the Autism Speaks Boards or within it's leadership. Perhaps the real missing puzzle piece, is the non-existent voice of those with an ASD in the Autism Speaks organization.
One of the key puzzle pieces to the Autism Speaks organization was lost last week as a result of Suzanne Wrights' poorly chosen words as well as a history of Autism Speaks blunders. John Elder Robison, Best Selling Author, Autism Consultant and Educator, and adult living with autism, resigned from the Autism Speaks Science and Treatment Boards last week due to the varying differences between his views of what it is like living with an ASD and the beliefs, ideologies and overall mindset of the folks at Autism Speaks http://jerobison.blogspot.com/ . Mr. Robison had hoped to change the views at Autism Speaks by using his own life experiences, his "gifts" as well as his "disabilities" to change the tone of a very controversial organization. It would appear his words fell on deaf ears. Ironic that Autism Speaks is supposedly "speaking" for those with no voice, yet time and time again, they have proven that with all their speaking, they do very little listening.
Mr. Robison concluded that Autism Speaks, although in a position to advocate and speak for children and adults living with autism, clearly is not listening, so he bowed out. What a shame. Maybe Suzanne Wright needs more people living with an ASD on her organization chart. Maybe instead of screwing things up with her horribly misguided words in a march on Washington, Suzanne Wright should have had someone living with an ASD use their own words, their own voice. Perhaps people living with autism can "speak" and regardless of your position on the "Org Chart" Suzanne, maybe you need to listen. Although there are many children and adults living with autism that struggle day in and day out, and this struggle takes a toll on their families, there are just as many people living with autism who don't think they have an "autism situation" or a "problem". People who view their autism as a piece of their big picture, not the mysterious, doesn't quite fit, puzzle piece. I don't know of any other organization that is designed to advocate for a group of people that's misconception of those people is so off-putting that the very people they purport to serve, holds them with such disdain that they create their own group. An Anti-Autism Speaks group, was created by folks living with an ASD so that the true voices of autism can be heard http://autisticadvocacy.org/
Many higher functioning adults living with an ASD, feel that Autism Speaks spends too much of their millions of dollars (reportedly 44%) on research, and much of these research dollars are not spent on ways to improve the lifestyles of people living with an ASD, but to prevent people with an ASD from existing in the first place. For example, prenatal testing that may reduce a couples chances of having a child with an ASD. This compares to the reportedly 4% of Autism Speaks budget that goes to Family Services to help children, and adults with an ASD that are already here. Some argue that Autism Speaks' goal of "eliminating" autism prays upon parents' fears and stereotypes and that their fundraising tactics enhance these fears with families and the general public. Words like "burden", "despair", "disease" or "defective" do NOT pertain to my son, yet Autism Speaks is "speaking" for him, "speaking" for my family and that is the misconception the public "hears".
I do not have an ASD. I do not know what it is like to have a "neurological difference" that varies from the majority of folks in the world, so I cannot SPEAK to what living with an ASD is like. As a mother of a son with an ASD, I do HEAR and I do LISTEN...to my son's words...to his feelings....to his heartache....to his joy. While listening, I have never heard Ryan complain that he felt he was just "existing", nor have I heard him utter words like "despair" or wonder if he was part of a "monumental health crisis". Ryan feels like Ryan. A boy who loves video games, music, math, and despises art with every fiber of his being. A boy who loves his mother to the sun and back and is fiercely protective of his little sister. A boy who cries at the thought of his brother, his best friend, leaving for college in a mere two years. A boy who has two parents that love him and believe in him and fight for him. A boy who does not feel like there is a piece to his puzzle that is a mystery. A boy who believes all his pieces complete the picture of who he is, and not one piece has any more importance than the next. A boy who believes that autism is part of his "genes", and that these "genes" make some parts of his life a little tougher, but these autism "genes" have also given him gifts. Gifts that those of us without the mysterious puzzle piece gene, can not begin to fathom.
So yes, even though today, I jumped on the "Wow, Suzanne Wright of Autism Speaks, I can't freaking believe you said that stuff out loud", I am not denouncing Autism Speaks (like they would really care about my half pence anyway) because I think they have done a lot of good in many areas. Autism Speaks has helped enact legislation that forces insurance companies to pay for autism services that were once out of pocket expenses (still have a looooooong way to go on this one, but is has started). Autism Speaks has raised awareness of autism and although some of their tactics have basically sucked, it still has people talking, and talking often leads to understanding and to change. A monumental change that must be forthcoming is that if Autism Speaks continues to "speak" for all individuals living with an ASD, than I hope it shuts up long enough to start listening. Listening to those who are living with an ASD and putting their voices on Autism Speaks' boards and in their leadership. Listening for ways to help gain acceptance and not always touting the awareness of differences for people living with an ASD. Listening to the joys and the successes and not always focusing on the hard ships and the heartaches may be the key to a truce between the autism community and Autism Speaks.
I have one child with an ASD, so I can only speak to my family's experiences. I am in no way diminishing the struggles that many families experience day in and day out with an autistic child, but as an organization designed to support all people living with an ASD, Autism Speaks need to stop speaking and listen. Please, just stop speaking and listen.
Just like any child, my son has had his share of heartaches and successes. Although I may not know the inner workings of Ryan's brain, I think I know his heart better than anyone. Most days Ryan is proud and confident of who he is...the entire picture....not the pieces. Knowing his heart so well, I can assure you that at the age of 12, Ryan couldn't give a da** what Suzanne Wright or anyone else at Autism Speaks thinks about him, writes about him or campaigns about him. However, one day, as a successful, contributing member of society, he will. And I can say with utmost certainty that to read Suzanne Wright's words, to think people believe a part of his puzzle is broken, defective or part of a "monumental health crisis" would hurt and sadden him.
This was one bandwagon I was proud to jump on...for my son. After all the years we have spent telling Ryan that we all have differences and that these differences are what make the world such a unique and great place, to read that the co-founder of an organization created to help Ryan and others living with an ASD, considers people like Ryan a "national emergency" is wrong on so many levels. I never want my son to be ashamed of being exactly who he is...all the pieces of him that make him perfect...that make him, him. So, I hope the folks at Autism Speaks recognize that the real puzzle, the real mystery is why they continue to Speak for people living with an ASD, but rarely take the time to listen to them. Now, that I have jumped off my bandwagon, I must go. I'm pretty sure my UPS BFF just dropped off my new high heeled sneakers from Zappos. Don't worry, if they look as ridiculous as they sound, Ryan will give me his AWEnest opinion and chances are they will be returned on the next UPS truck that cruises through the neighborhood.
Keeping it real, raw, and AWEnest while laughing, loving and living in our world
touched by Autism.
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Definition of Awe: