The vortex, landmines and me.

“The flowers are gone, the flowers are gooone!” Tears streamed down my beautiful daughter’s face as I tried to explain that the seeds we had to plant would make the flowers grow back. She doesn’t understand and she cries harder- red faced, short, quick breaths, and big heart breaking tears. What she didn’t know is that I was crying with her, as this continued for a half hour, or more. With each tear, each “The flowers are gone!”, I felt another piece of my heart hit my feet. Was it 5 minutes, an hour… more? I don’t know. We were stuck in the vortex of autism.

It was intended to be a fun, sensory activity. My little girl loves nature, dirt, flowers- she loves the many textures and colors that come with it and so I, perhaps naively, thought planting seeds in the ground and in pots would be something she would love. How very wrong I was. Or maybe not. Maybe next week she’ll love it. Maybe.  I’d collected all the supplies over the course of a week or so, excited to finally be able to get outside after a long winter and do something fun with her. I had this vision in my head of all us with our hands dirty with potting soil, laughing, picking where the next round of seeds would go. See, there are times that I forget. I forget that autism is a thief. I forget that it can invade my beautiful little girl and leave us both breathless, struggling to find calm. I forget that she’s not “typical.” It’s easier to do than you might think. In the comfort of home she’s not “different.” She’s D. She loves dress up and sparkly things; she loves to run and play; she loves to explore. She’s a ball of sunshine and fits of giggles that make my heart soar. She is “my girl.” I adore her.

I adore her and I hate autism.

There I said it. I hate autism, with a passion; with a vehemence I didn’t know I could feel towards something I can’t see or touch.

One well meaning friend told me to try to believe that God doesn’t give us more than we can handle. Ha. Pardon me while I spit out expletives I can’t type here.  It may take a few…

Then there are those who will try to tell me that autism is a gift. I can’t be convinced that a gift comes packaged in this kind of pain. Maybe they don’t know this level of heartache- and if that’s true, I am happy for them.

Living with autism is like walking in a minefield, you never know with every step, every activity, if something will blow. You never know what is safe, and what isn’t. Just because it went well yesterday doesn’t mean that it will today.

There are days when I feel like I’ve got this.

There are nights I feel like I’m failing.

There are days when the pressure and stress is so high that I realize I’d forgotten to breathe.

There are nights that she curls up next to me on the couch and together we read, sing, take “selfies” and giggle.

The autism spectrum- it’s not just for those diagnosed. It’s for us, their families, too and just because we’re on the “high functioning” end today doesn’t mean that tonight won’t end in tears. It doesn’t mean that even in those tears, we won’t still hope, still love, still pray. We still believe in the child we love that we can’t always reach, but will never stop trying- even if we feel like we’re pounding our heads on the proverbial brick wall.

It’s not easy. It hurts- and it’s ok to admit it. Sometimes we have to fall apart to find all of the pieces and put ourselves back together- with a little extra glue.

Advertisements

Autism and Vaccines

 

In many respects, you can divide the autism community into two groups; those that believe vaccines put their children at higher risk for the neuro-developmental disorder, and those who don’t. Both camps have a wealth of data that they use to substantiate their claim. It is provocative and divisive.

I am not writing to take one side or the other. That’s not what I do. My mission as an advocate has always been to unite, not further divide. I do not have the medical training to be able to confidently tell you that autism is, or is not, caused by vaccines. I, like many, have a lot of questions that are difficult to find answers to. The information available is so dramatically slanted to one side of the argument or the other, I do not know what to trust. What I do know is that this argument has divided a community that needs to stand together, now more than ever.

Those of us who have a child with autism have an intimate understanding of the old adage, “It takes a village to raise a child.” We struggle every day to keep our children safe and included in our communities. We attend I.E.P meetings with statutes memorized so that we can properly advocate for our child’s right to a Free and Appropriate Education (F.A.P.E). We remodel our homes to make room for sensory equipment and hunt down the perfect socks without seams, or buy 10 pair of the same shoe in 10 different sizes because they’re the only ones we can get our kid to wear. We watch in horror and heartbreak as our child self-injures out of frustration that they can’t adequately express. We rely on friends, neighbors, and service providers to help us navigate the journey.

We have enough battles to fight, within our homes, and outside of them.  Why are we turning on each other because of our personal beliefs about vaccines? As a community, we have lost sight that no matter what causes autism, we need to unite to help those effected be the best that they can be. Imagine what we could do if we put our differences aside and worked together to address the challenges we all share. Consider for a moment the power of our voices if we all raised them to advocate for the services and care people with autism need to be productive and independent.

There is an event coming up next month that features many of the “anti-vaccine” figureheads. The ones whose names, such as Andrew Wakefield, are synonymous with the movement itself. I don’t know the speakers personally, but I know their work. I know that they have worked long and hard to answer many of questions parents and the medical community have. Whether or not you believe in their credibility is up to you. There has been a lot of chatter about whether or not having the event at the local high school is “dangerous” or damaging. Obviously, in such a contentious issue, there are two very different sides. We live in a country where we are free to explore ideas, research, and form our own conclusions. This event does not demand that you believe one way or another, it is simply a collection of people offering their side of the issue. You are free to go and listen, or not.

The only danger this event poses is to further isolate and divide a community that would be a lot more effective and powerful if we could agree to disagree and stand together to help those whose lives autism has effected.

Fear of Age

In a Facebook post earlier today a friend mentioned that her autistic daughter has never had a real friend. Ever. She’s 16.

In another blog I read about a teenage boy whose meltdowns became so severe that the police had to be called, not because he is a criminal but because he is simply too big, too strong for his parents. They can no longer keep him safe. They can no longer keep themselves or his younger sibling safe.

It is in those stories; those brief glimpses into what lies ahead of us in this journey that I feel my heartbeat quicken and the panic rise. All parents wish their children didn’t grow up but for me, it is not simply because I want her to stay little and have endless tea parties. It is cold, hard, in your face terror of what the years ahead hold for us.

You see, right now it’s “simple.” She’s 5. She struggles socially but is academically on target, and in some places I dare say gifted. Her classmates notice that she’s different but they still try. They still holler, “Bye!” when I pick her up from school. There is one little girl in her class that always tries to care for her; look out for her.

Her meltdowns are not that frequent and when they happen I can bring her back; literally or figuratively. I can still help. I can still reach her.

Mama’s touch still works.

What will I do when it doesn’t?

What will happen if I can no longer reach her when the world becomes to much?

What will happen if no one is hollering “Bye!” at the end of a school day?

How will we navigate that? CAN I navigate that? Am I strong enough, good enough? Is my love big enough to hold her up in these moments?

As I type the very mention of it is invoking anxiety.

I feel like I should read as much as I can, learn as much as I can- as if my daughter’s adolescence is test I cannot fail. In a very real way, it is.

I wish I could tell you that there is a point to this post. There is no magic answer, no deep wisdom; there is nothing but fear.

This is a scary maze of growing up with our kids; trying to find the right turns to lead them to the best life they can possibly have and I’m in it with you.

 

Autism Awareness Gets Real

As everyone knows, it’s Autism Awareness month. It’s all over the media. Many of you may have seen blue lightbulbs on your neighbors’ porches. It’s a month that families all over the world, and right here in Vermont, strive to not only bring awareness of autism to our communities, but acceptance, understanding and inclusion.

Inclusion is not proximity. Inclusion is not simply having an autistic child in the same classroom as his or her peers. Inclusion is not just adding a disabled child to a team sport. Inclusion is striving to make these experiences as successful for a challenged child as it is for a “normal” one. Inclusion is understanding that we are ALL different from one another- autistic or not. I am different from you. You are different from me. Neither are “less.”

Imagine, if you will, being a child in which the world functions in a way that you don’t understand. Imagine that the sounds are too loud, the lights too bright, the smells too intense. Place yourself there, for just a minute… Imagine that you are on a playground watching your peers play a game you know how to play. You want to play. You want to run over and join them and show them that you can be a part of things too, but you don’t know how. You don’t know how to speak the words. You’re trapped within yourself, longing for someone to come invite you, to make it safe.

No one comes.

Imagine how you feel. Imagine how your mom must feel, unable to make it better, unable to wave the magic wand that all mothers wish came with our children to make all of your struggles go away. She can’t and her heart breaks.

A few hours later it’s time to go home. It’s a lot different there. There isn’t someone to help you every second of every day because you have siblings. The sudden change is more than you can handle after everything that happened at school. You don’t have a way to express how you feel. You’re body is vibrating with the anger you held in all day. The teachers don’t understand you. You want to learn but they don’t know how to teach you. Your peers, who you desperately want to be friends with, ignore you. The lights over your head sounded like airplanes. The smells of the cafeteria made you sick but you were forced to sit still. All day someone demanded that you look in their eyes when they talk to you. They don’t know how uncomfortable it is.

You get home and explode. Home is safe. Mom understands why you’re angry. You don’t mean to be destructive, you just can’t hold it in anymore. Glass breaks. Lots of it. You’re bleeding. Mom tries to help you calm down; tries to treat your cuts but you can’t stand the touch. You run. You don’t know where you’re going. You don’t know that it’s dangerous. You don’t notice the cars driving down the street. You just run. Run from it all.

Now, imagine that you are the mom in this scenario.

Imagine that you spend your life fighting, begging, pleading, crying for someone to understand, just as your child does. Imagine that the services you need to be able to give BOTH of your children as much of a normal life as you can, are denied, cut back, refused. When you ask why you are told that P.C.A (personal care attendant) time can’t be used for safety or supervision. You wonder how you are going to be able to shower because you can’t leave your child alone without risk of harm. You wonder if you will ever sleep again. You wonder how you’re going to get through the day, never mind tomorrow. You cry in defeat and anger at a system that just does not understand.

A few days later, after exhausting all resources, someone tells you that your child qualifies for residential placement, since you cannot possibly meet his needs at home. You are so stunned you can’t speak. You are angry, hurt, and absolutely bewildered. You don’t want to send him away, you just want some help, some care, some understanding. Why is that so hard?

This is what families all over Vermont face, every single day. This is what we’re talking about when we say that more than awareness, we need understanding and acceptance.

In a state that can easily spend a half of a million dollar to “assess” VT Health Connect why are we so willing to split our families apart instead of giving them the help they so desperately need and deserve? Evidence based treatment that should be covered under the Autism Treatment Bill, passed 4 years ago, are not being provided because Medicaid reimbursement rates have been cut and designated agencies cannot afford to provide them. Somehow the powers that be think it is cheaper to send our kids to residential care than it is to care for them right here at home.

The average cost of a year of residential care is $200,000 and can be as much as $400,000 for 24/7 one on one care and other services.

The average salary of an A.B.A therapist is $33,000 and $22,000 for a P.C.A, according to Glassdoor.

You do the math.

There is no logic. There is no heart.

This is a multi-faceted problem with no easy solution, but there is a solution. We need to come together and find it. Too many of our neighbors are suffering. Too many of our children are unable to get the help they need to become as independent as is possible. Too many parents are faced with impossible choices that they wouldn’t be faced with, if they had adequate community and organizational support.

We, as a community, are not asking for pity. We are asking for help. We are asking that the great State of Vermont rise to it’s commitment to put our families first. Will you join us?

IEP: Who Wrote That?

 

My daughter is…

brilliant

independent

sweet

loving

strong

 

She loves…

animals

sliding

watermelon

cuddles

nature

 

She has…

innocence

curiosity

compassion

love

autism

 

 

Autism. It’s ONE word out of 15 that I chose to describe my angel.  JUST ONE.

D’s diagnosis of autism doesn’t tell you who she is, what she likes, or what she doesn’t. It doesn’t tell you that her smile will brighten the darkest of days or that her laughter is the music that my soul dances to.

Why this, now? Well, I received a copy of D’s IEP and while reading it today I was brought tearfully to my knees with it’s language.

“D isn’t… D can’t…. D doesn’t…”

My mother’s heart bleeds.

I know that my sweet girl has challenges. I know that she struggles to communicate with her peers. I know that she sometimes can be overwhelmed.  None of this is new to me.   What is new to me is the callous, cruel focus; the word “can’t” in relation to my daughter. See, in this house, there is no “can’t.” There is not yet. There is hope. There is the will to never give up, never give in.

There is love. Unconditional, unyielding, unshakable love for the person that D is now and will become. I don’t care what the textbooks say she should be. I’m not raising a textbook. I’m raising a precious little girl to, I hope, be unafraid to be herself, to pursue her highest potential and be strong enough to stand against the winds that life inevitably blows.

Life with autism isn’t always easy. There are days, like today, when it can bring me to knees. There are far more days when I am in awe of D’s uncrushable spirit, her determination, her desire to learn.

No matter what the day brings, one thing remains the same: I am proud of D. I am proud to be her mom. No one can take that from me, or from her.

So, to whomever D’s IEP, I realize that it’s your “job” to point out D’s challenges so that goals can be made to work on them in the coming year. I don’t fault you for that. What I DO find fault with is that the entire focal point of this document was on what needs improvement. The next time you write an IEP, for D- or any other child- remember something, please. That document is more to a parent than just a clinical piece of paper. What and how you write can help or it can hurt. Do your job, but remember that there is so much MORE to the child you are writing about than a diagnosis.

So much more.

 

 

 

 

I Fear God, Wandering and Divides

I don't know about you, but this scare me...

I don’t know about you, but this scare me…

The names and faces of all of the precious children with autism that have vanished or died flash through my mind all of the time. As I think of them I worry about my own daughter.

I remember when adorable Mikaela Lynch disappeared and was later found, drowned, in a creek by her home… I was devastated for her, for her family and simultaneously terrified of my little girl finding the same fate… Much like sweet little Mikaela my girl loves water. My ex husband has a pool. For several days I harassed him about it. “Don’t let her near it when you’re not right there. Keep an eye on her. You don’t understand she could drown!” The mere thought of our little princess near that pool sent me into a panic attack. Friends told me not to think about it; don’t create problems where there aren’t any. They were right. I was going out of my mind with fear, knowing that her dad wouldn’t let anything happen to her, any more than I would. We might not have made it as a married couple, but he’s a good dad. I know this. I repeated all of these things to myself.

Months later, so many more children have perished… So many wandered from school; from home; from grandma’s house… never to be seen alive again. I shake my fists at the sky and ask “Why? Why God? WHY?” I have yet to receive an answer- or at least one that I can live with…

A fellow autism mom, advocate and a woman whom I have immense respect and love for recently posted a picture of her family- each one of them had their hand on their treasured boy; one who is severely effected by autism and who lacks any sense of danger… In the caption she begged that people look to understand, not to judge… It can happen to anyone.

Even her.

Even me.

Even you.

So what do we do? Do we wring our hands in despair, demanding answers from the divine when perhaps that is not where the answers lay at all? What if God is up there shaking His fist at us for not hearing Him?

What if the answers are not in the question, but in our response to the tragedies that befall our community every day…? What if we stood together BEFORE Avonte, before Mikeala, before the next child vanishes without a trace…? What if the camaraderie, community and care that flows so freely in the face of tragedy was actually part of our daily lives? What could we do then?

I think of the deep divide within the autism community… Cure vs. Acceptance, Vaccinations vs. Anti-Vaccinations… the divides are endless. What if, instead of pointing fingers and blaming others if we all stood together for our children, for our families?

Can you imagine? Try… for just a minute to imagine what life would be like if we treated each other with understanding, compassion and love BEFORE tragedy strikes… Could that be the answer? Could it really be as simple as LOVE? Think about the powerhouse we could be if we were all motivated by our love and commitment to our families and each other and not proving a point.

Beyond the Season of Giving

The holiday season is here. The bells are jingling, carols are playing and gifts are being bought in a frenzy. No matter where we go or what we do, it’s in our face. For many this is a happy time of year, filled with laughter, family, friends and traditions passed through generations. Then there is the rest of us.

You see I love the holidays now that I have children to create traditions with; to create the magic that I always envisioned this time of year to be. I am one of those “crazy” moms who will use cross-country skis to make “sleigh tracks” and jingle bells outside my children’s doors. I want to give them magic. More than anything, I want to give them roots. I want to give them a childhood that they will look back on with a smile. One that they will take bits of and pass down to their own children.

I’m what you might consider an adult orphan. I have no real family to speak of, with the beautiful exception of some very special people who came into my life and stayed. But they aren’t the family I grew up with; ones I can reminisce with about childhood antics or loved ones passed on. No matter how special they are to me, there is still a sense of loneliness that runs deep to my bones as I watch and hear the stories of generations gathering to the table or around the tree.  I have never known what it meant to truly be a part of that; not just an invited outsider. That is not a level of loneliness I ever want my children to feel and one I try to assuage in others who ache as I do.

This time of year brings out the benevolence in our society. We think about those who are homeless, jobless, and hungry more at this time of year than we do any other. We worry about children who will not have a gift to open from Santa on Christmas morning, families that don’t have enough food, that homeless man we see riding his bike all day, every day so that he can stay warm.

Sadly, a week later that same child we insisted deserves a toy for Christmas is busy trying to stay warm because his mom didn’t have money for fuel oil and no one will help her. The family we bought a ham for ate every morsel in moderation to make it last is once again hungry and praying that the food shelf isn’t out of stock. The homeless man? He died of hypothermia after collapsing in exhaustion in his make shift tent. WHY? Can we really call ourselves kind, giving, generous people if the only time we are inspired to give is when we are relentlessly reminded of our excesses? Let’s face it, Christmas is a time of abundance for many. Is it only when our greed is so obvious that we can see what is happening around us?

The quotes about being thankful have been flowing through social media but how many of us are TRULY thankful? How many of us look at our lives and say, “Thank you”- and mean it? Or are we too busy tallying up our accomplishments and possessions? Do we think that we don’t have to be thankful because we “earned it?”

Someone gave us a job so we COULD earn it. Someone taught us so we would be worth hiring. Someone, and if you’re like me, a lot of someone’s, came into your life and believed in you enough that you believed in you too. Nothing we have is solely our own. NOTHING.

This post isn’t about trying to make you feel badly or to write a check to some local charity, it’s about making us all, myself included, THINK. It’s about seeing the panoramic view of our lives and finding what truly matters. It’s about getting honest with and about ourselves and being true to the person that so many of us want to be, but get caught up in the race between working and buying that we get off the track we should be on. The only race we really need to win is the one that helps our world become a better place, one life, one heart, one smile at a time.

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.

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.