Advocate or Bobble Head

In the world of autism there are so many people claiming to fight the good fight; to stand up for what’s right for those with autism and their families- but who’s really DOING it? Have you ever wondered about that?  This is one of those “elephants in the living room” that no one wants to talk about. We can’t change it if we don’t expose it; if we don’t confront it head on.

In the approximately one and a half years that I’ve been in the advocacy world myself I can tell you from first hand experience that there is a huge difference between those whose who use the word “advocate” to polish their resumes and those who truly stand for what they believe.

In May of 2012 I eagerly joined the Vermont Autism Task Force. Not even a month after my daughter’s diagnosis I desperately wanted to DO something- not just for her, but for all kids like her. I remember sitting in my friend’s living room in tears. This problem was bigger than me and my daughter. What happens to the children that don’t get the help they need? With that on my heart I dove into advocacy. I wanted to be part of the solution. I wanted to make a difference. I had to at least try.

I remember how green I was… how eager. I remember sitting in the conference room at one of the first meetings I attended, taking notes, listening intently- and speaking up when I had something to share. I took my position with them very seriously. It was a Task Force- and that meant that we, as a group, could do big things to help those we served, right? I told my daughter’s therapists about my membership and offered to help if I could. I had this vision of being able to bring the issues to the Vermont Autism Task Force and have the collective effort of like minded people to tackle it with; to create a plan of action on how we could fix what was wrong.

A while later my daughter’s occupational therapist came to me. She was clearly distraught and frustrated. She explained that Medicaid was DEMANDING that she videotape an adolescent she worked with learning to dress herself – in the name of “training” a personal care attendant.  I was livid. Was this even LEGAL? I reached out to a co-chair of the Task Force who directed me to someone else within another organization. That person told me it was none of my business. Here I was thinking, “If they are demanding this from one child, how many more are they demanding it from?” To me it was the symptom of a larger problem. I refused to be silenced. I continued to make noise, to research the legality and learned that if, for instance, someone tried to cross the VT/Canadian border with such a videotape they would be arrested for possession of child pornography.

As I intended, I marched into the Vermont Autism Task Force meeting with this issue on my mind and explained it to the group. I expected outrage. I expected someone to say, “We have to do something about this!” What did I really hear? Silence. No one said a word with the exception of one member who only said, “Let me know how you make out with that…” WHAT?!?

It was in that meeting that I realized that Vermont Autism Task Force is by far not what it claims to be. I’ve since learned that the co-chairs were never nominated but in fact declared themselves as such. The only rules that exist are the ones the co-chairs make and choose to enforce. The rest of us? I’m not even sure they know we exist.

A few months went by and my disillusionment had given way to the stark reality that I was going to have to blaze my own trail if I truly intended to do something productive for these children and families. I created the Vermont Autism Network and started to work on my own.

One day while on Facebook a news story about a little boy with autism in Southern Vermont came through my news feed. His mom and aunt were desperate to know what was happening to him at school but he was unable to tell them. He lacked the communication skills necessary so they put a recorder in his backpack. He had been locked in a closet for most, if not all of a school day. He had been made to clean his own urine from the floor when the paraprofessionals refused to let him out to use the bathroom and they were heard joking about how long they could withhold food and water.  To say that I was upset would be an understatement. I emailed the reporter explaining who I was and asked him to let the family know that I was here to help in any way I could. Within 24 hours the family called, and from that moment on we worked together- his family on the local side, me on the broader, statewide side.

Not surprisingly, there was not a word spoken of this boy by anyone else on the Vermont Autism Task Force. The silence was deafening.

That was the true start to my advocacy work. I’d done a few other things before that, but to me, that is where it begins. That is where I found direction for my passion. I began conversations with state representatives and the Secretary of Education. I didn’t give up, didn’t back down. I still don’t. I never will.

Now, a year and a half after all of that I find that I have no desire to be a part of a “Task Force” that has no force. There are indeed some well meaning people on the Task Force but unfortunately the good ones are usually driven away by the inner politics and nonsense. People that truly want to help don’t stay because they learn quickly that that is not where it is going to happen.

I’ve since immersed myself in many other organizations and councils- and I still run the Vermont Autism Network. I’m just not as gullible as I once was. If I have anything to credit the Vermont Autism Task Force for it is the lesson it taught me. Just because an organization has a mission statement that rhymes with my heart doesn’t mean I should trust it.

Actions speak louder than words.

There are so many agencies like this one. Originally formed with good intentions but have meandered down the path of futility. Everyone sits around a table once a month and says things that sound good- but there is rarely any action to follow through.  I’ve coined them as “bobble heads.” Remember those things? They’d stick to your dashboard and nod their heads every time you drove over a bump; as if they agreed with every single one.

As both a mom and an advocate I am both saddened and sickened . Our children and families deserve better. They deserve people who aren’t afraid to fight for what is right; who speak the truth even if it isn’t popular. They deserve to be supported in their struggles. If these people can’t or won’t do what they profess to, perhaps it is time for them to get out the way.

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Diving Into The Shark Tank

I admit it. I’ve been wary of diving into the controversy over Autism Speaks. Today I find myself in a position where I can no longer sit on the fence.

I’ve always had mixed feeling about the organization- and as is true to my nature I tried to view them very holistically. Before I cannonball into what inspired me to write today, I feel like I should first tell you why I’ve been on the proverbial fence. Before I begin I will respectfully ask that no tomatoes are thrown.

Many in the autism community are offended by Autism Speaks use of the word “cure” and even more angered by their pursuit of one. They see it as Autism Speaks flagrantly announcing that autistic people are broken and flawed; that they have a disease akin to leprosy. Words such as “epidemic” are interpreted as fear mongering techniques. (1 in 50 school age children? If not an epidemic, what is it?)

Let me tell you why I disagree. (Don’t worry the cannonball is coming.) I disagree because autism is a spectrum disorder. Specifically meaning that each person with autism is different. Their strengths are different. Their challenges are different. No two people on the spectrum are the same. Ever.

The majority, if not all who are offended by this type of speech are not severely effected. Those with autism who protest this language are generally high functioning- not without challenges of course but they have found a way to live with the challenges that autism has given them. Parents, relatives and friends who protest are in some ways, much like me. Their loved one has autism and they do a simultaneous dance of celebration with what has been overcome and wanting desperately to allow their loved one freedom to be themselves, and to be loved for who they are. Autism shapes people, it quite often manifests in special gifts and talents that may (or may not- how do we know?) exist because of autism. It becomes a part of who you are and everyone wants to be respected for who they are. I get that.

What I don’t understand is why people who do support a cure are vilified. Supporting a cure does not mean that their love for someone with autism is less. It doesn’t mean that they don’t respect who their loved one is. It means to me that they know the dark side of autism, and want desperately to help the one they love to be free of the chains that autism binds around them. The pain of autism is immense for so many families. How can we look the other way from this and pretend that autism is just a simple quirk? How can we ignore the child who repeatedly bashes their head against a wall to relieve the frustration that they can’t speak? How do we turn away from the mother who is still cleaning her son’s diapers even though he is closer to adulthood than infancy? Why do we close our eyes, ears and hearts to the brutality of severe autism? Is it because it is uncomfortable? Because we fear that if we linger too long in the dark side it will engulf us too?

Are we that disconnected as a community that we only identify with the part of the spectrum that is in our lives? Do we each take our own puzzle piece, run around comparing ours to others and only surround ourselves by the ones that closely match our own? Are we really that segmented?

I don’t think that there is a right or a wrong answer to wanting to know the how’s and why’s of autism. I’m a software developer and very much a problem solver at heart so perhaps that is why I feel this way. Or maybe it is deeper than that. Maybe it is because when I watch my beautiful daughter get lost behind the wall that autism erects I too want to smash it down. I want desperately to see the look of confusion and longing for connection vanish from her eyes. I’m her mom. Aren’t I supposed to be able to fix everything??

Does thinking that way make me a bad mother? I don’t think so… I think it is natural parental instinct.

It’s true that I’ve always thought that Autism Speaks should include those with autism in their conversation; that I’ve been continually dismayed by their financial management and personally insulted to learn that every donation I gave them did not really go to helping those with autism but simply rolled over into other fundraising events- among other things I can’t support. I no longer donate to them because of this- however until today I had tried my best to reserve judgement. The voices on both sides of the fence were loud and I had a hard time deciphering truth from interpretation.

Someone that I have the utmost respect and admiration for works for Autism Speaks. She will know who she is if she reads this.*  She has devoted her life to fighting for insurance coverage that will provide the therapies that people with autism need to learn their way around the world. She has a son with autism whose smile makes me smile, even if I’ve only seen it in pictures. I sometimes tell people that when I grow up I want to be like her. A powerhouse for change with a heart that never quits.  Maybe it was this personal connection that made me sit on the fence for so long.

Now the cannonball. Today I read a revealing post by Lydia Brown in which she describes Autism Speaks association with the Judge Rotenberg Center. You can find that here: http://www.autistichoya.com/2013/11/an-unholy-alliance-autism-speaks-and.html. The JRC operates with this methodology “if you pair an unwanted behavior with a painful stimulus, the unwanted behavior will go away.” (Quote from Lydia Brown’s article) The stimuli they use include physical abuse and what I can only call torture. According to Lydia Brown at least 6 people have died as a result. How can such a huge organization that claims to advocate for those with autism collaborate in any way with a Center who blatantly abuses people on the spectrum??? I am sickened and appalled.

After learning what I did today; after reading John Elder Robison’s resignation letter in which he implores them for not accepting his valiant efforts to include those they represent in their decisions and message (which you can find here: http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html) I find myself in absolute awe of the audacity of the organization to so flippantly disregard those it claims to be for. I wish I could say I was angry, but I am not. I am sad. I am sad that an organization with the power to do so much good for those with autism is instead using it to exacerbate the negativity that all of us in the autism community fight every single day.

“Light it up blue?” No thanks. I’ll forgo the passive lights and do what I do best: Get up and DO something.

**Everything I’ve written here is based on my own personal experiences, conversations and observations and is NOT intended to speak for anyone but myself.**

*I choose to not use names unless it is to give them credit such as Lydia Brown and John Elder Robison without consent.

Blissfully ignorant.

Autism journey

When I began this dance with autism I admit to not knowing a thing about it. What I knew is that my princess, my daughter, the reason for my every breath was out of my reach. At just a year old she wasn’t saying anything- not Mama, not Dada- nothing. When I, standing just a foot away from her said her name it was as it the sound of my voice hit a wall that separated us, bounced back to me and lay broken at my feet. She didn’t turn to me with a smile as I’d seen so many other children her age do. She didn’t even seem to know that I was there at all.

Many nights I’d lay awake at night and wonder what I was doing wrong. What was I missing? Was I a bad mom? Those questions did a violent dance in my head as I wrestled with all of things it could be… Was she deaf? That didn’t make sense because she would come running from the other end of the house if she heard the bath water running. She loves baths! The only answer I could find was not that there was something different about my daughter, but that there was something wrong with me.  

At her one year check up I fearfully mentioned to her pediatrician that she wasn’t talking. Should I be worried? I knew I should be but in asking that question I hoped that she would reassure me: “Oh no, every child develops at their own pace.” Instead I heard the words autism, assessment, Early Intervention. As soon as she said it, I knew, in the way only mothers can. I felt the word enter my head and drop to pit of stomach and then sink slowly, letter by letter, to my feet. In a daze I gathered up this beautiful girl that I love so dearly and headed to the car. My heart was racing and I couldn’t think straight. Never for a single second did I think of my beautiful angel any differently- what I wanted was answers. I wanted to fix it. NOW.

Since then she’s received the “official diagnosis.” She continues to receive speech and occupational therapy. Most of all, she continues to be the most beautiful, loving, smart, (I could go on forever!) little girl I have ever had the honor to know.

In a little over a year this wonder-girl has gone from being entirely non-verbal to having a vocabulary that grows by the hour and becomes more communicative by the day. Every time she says something my heart sings. Her voice is the most beautiful music I will ever hear. She will now cuddle with me- more than cuddle; she molds herself to me and LOVES it when I rub her legs. There was a time when that was something I could only dream of, yearn for.

What were the ingredients of this transformation? Time. Love. Patience. Add a strong helping of God’s grace. Mix well and repeat. I thank God every day for giving me the wisdom to buy animal magnets and spend countless hours repeating the names and sounds of each. That was the start to her speech… The first time I asked her; “What does a lion say?” and she let out “RAWWR!” from the tips of her little toes I felt silent, happy tears sneak down my face as I swung her around the room in celebration.

Some days I miss being blissfully ignorant. I miss the ability to sleep at night without worrying about her future. Our future. Some days I mourn the loss of “normalcy.” I see other children her age laughing, playing, eagerly telling their moms about what they did or are going to do and it hurts. It hurts sometimes to see how different she is from her peers. There is a wall between her and those around her most of the time. I feel it’s presence; sometimes I think I can reach out and touch it- and it breaks my heart. I see the yearning in her eyes, the deep desire to understand, and the confusion. It is in those moments that I wish I had a magic wand that would break down that wall- and cry inside because I don’t.

And then there is every other day… the days that I spend playing with her, weaving therapy techniques into our every day, ordinary life. The days that I watch her in amazement and pride as she makes a “picnic” for us to share; yet another experience I wasn’t sure I’d ever have with her because of autism- and yet she’s doing it. The days that I want to burst with joy because she took my hand and led me to the couch with one her many books. They seem like such small things but they aren’t in my house. These are the moments that will stay forever frozen in time. These are the moments that I appreciate not being blissfully ignorant.

I remember being in a store a few months ago and there was a little boy walking with his mom. I think he was around 5 or 6. He was rattling off in excitement about something he had seen- and of course wanted. I keenly remember the expression of exasperation, the tone of annoyance in the mom’s voice as she responded. I don’t remember what she said. I was too caught up in my own thoughts… I wanted to tell her to be grateful that he could tell her what he wanted, what he feared, what he needed. I wanted to tell her that his ability to share his world with her was a precious, precious gift. I wanted to gently shake her and ask her, “What would you do if he couldn’t talk?”

I realized then that being ignorant wasn’t blissful at all. Sure it had blindly relieved some of the stress but that was such a small thing compared to the joy of understanding.  I see the world differently now. I see the things my daughter sees like the rain that she loves to watch fall from the sky. I feel the myriad of textures that exist in the world around me because I have made a conscious effort to try to experience the world the way she does. More than anything I know just how wonderful it is to watch her overcome. I’ll take that over being ignorant any day.