Rant: On "Autism Parents" and Superheroes

I’ve always felt a little on the ‘outside’ in my life.

I’ve generally never had a hard time making friends, and have typically been readily accepted in most social circles, so this feeling hasn’t necessarily been due to any external forces.

But I’ve always known that, on many levels, my mind works differently than many of my peers. I process information very rapidly. I process emotions very (very) slowly. I experience the world more through sounds than I do through any other sense, and often operate a bit on autopilot when things get too overwhelming.

And, for better of for worse, I have a tendency to reach very different conclusions from my peers when presented with the same set of information.

Being a person who approaches things pragmatically, forging a community- in the ideological sense- has not been something that has come easily to me. There is no one personal philosophy that defines me enough that I feel like I can connect to others through it on a global scale.

While I breastfeed, co-sleep, baby wear, and follow the vast majority of the principles of “Attachment Parenting”, it’s never been a label I have related to. I have always considered myself to be a bit of a hybrid between an anthropological parent (ie: parenting in ways that help society function at its fullest, with practices that change and evolve as society changes and evolves) and a scientific parent (ie: parenting in ways that are dictated by healthy biological development, no different really from our animal counterparts), and my research in both of these areas has fuelled the decisions that Jason and I have made regarding our children’s early rearing.

Now, don’t get me wrong. I love my “AP Parents”. They are some of the most beautiful and deeply connected people I have had the pleasure of meeting. But I have not generally applied the term to describe myself.  I always considered our parenting to be too complex to be summarized by a set of doctrines and practices.

I don’t “AP” parent.

I just parent.

And, for the most part, that lovely community has always responded with kindness and understanding: We are here for you regardless of how you define yourself. We are your tribe.

Now, as my children are growing older and their distinct personalities are emerging, I am finding myself once again wandering within a community, feeling like an outsider in a bit of a foreign land.

You see, I’m not convinced that there is any “community” more defined, more proud, and more present than the “Autism Parents”, at least not in my own particular neck of the parenting world.

I know some amazing parents of Autistic children. Truly I do. And I would consider some of them to be friends that have provided me guidance, support, and friendship in way that has not often been paralleled in my life.

But I am not an “Autism Parent”.

And every day this distinction becomes more and more apparent to me.

Unlike the ‘Attachment Parent’ label, my reaction to ‘Autism Parent’ is a much more negative one. Not only is this not a term I relate to- it is a term that I reject outright. It is a term that I find offensive on multiple levels, not the least of which being the fact that Charlie does not, at this time, show any indication whatsoever of being Autistic and how I define my parenting experience should probably not completely exclude her from the dialogue.  She is my child, as much as Sammie. She is not an after-thought.

(I also have massive issues with the double-think required to use this type of terminology, but that’s a story for another post.)

(Come to think of it, there are a whole lot of things that I hate about the “Autism Parent” culture and I suspect that I will have an entire series of posts dedicated to just this topic…)

(But, for now, one thing at a time...)

One of the things that really gets to me about the ‘Autism Parent’ movement is the idea that somehow being the parent of an Autistic child has made me “more special” than other parents. And not only more “special”, but “better”- more powerful, more engaged, more dedicated, more patient, more, more, more, more, more.  

The memes abound. There’s a new article about it every day.

Autism Parents are different from all other parents.  They simply ‘love’ their kids more.

Now, I’ve met a fair amount of parents of all walks of life. And I have one thing to say about that:

Bull shit.

Let’s put one thing to rest once and for all:

There is NO prerequisite training, test or other screening process for having an Autistic kid.

This is genetics, people. It’s the combination of DNAs, all interplaying with each other over the course of generations.

NO. God did not hand-pick ‘special people’ to have ‘special kids’, and if he did, I would sure like to have a word with him about the fact that thousands of disabled children are abused at the hands of their ‘special parents’ every single day.

“Autism Parents” are no more empowered to be exceptional parents than any other parent on the planet.

Are there some parents of Autistic kids who are absolutely amazing and make us all sit there thinking “Man, they have this shit nailed?”

Yes.

Just as there are some parents of “typical” kids who are absolutely amazing and make us do the same.

Don’t get me wrong- parenting an Autistic child can be a vastly different experience from parenting a neurotypical one (or so has been my experience from parenting my two diverse kids). Yes, there are different challenges and different struggles. I’m not going to deny that for a second.

But how we deal with that is an entirely personal decision.

There is no “Autism Parent Gene” that gets activated and turns you into a super hero the second your Neurologist hands you a piece of paper to sign.

And no, raising an Autistic child does not necessarily make you a better parent or a better person.  No more or less than raising a typically developing child would.

Parenting is an experience that absolutely transforms you from the inside out, sometimes for the better and sometimes for the worse. Which side of that fence you fall on is- quite frankly- entirely up to you.

So call me a cynic, but when I see crap like this:

All I can think of are articles like this. And this. And this. And this.

And the hundreds, upon hundreds, upon hundreds of different stories we have of “Autism Parents” abusing, neglecting, traumatizing, and even killing their children.

Autism is a neurological difference, not a flowing red cape. It is a part of the identity of the person who is Autistic, not the person who is raising them. 

And having an Autistic kid doesn’t make you a super hero. Nor does it make you a better parent than anybody else.

You aren’t a super hero* for raising your kid, neuro-diverse or otherwise, with love, empathy, support, compassion and respect. 

These are parenting fundamentals, and doing them is the bare minimum of basic human decency.

So, enough with the self-adulation.

edit note: Original text read "You aren't a hero for raising your kid", an unintentional omission brought to my attention by Liam in comments. People can indeed be 'heroes' for being good human beings who share love, respect, support and compassion with their children and with the world. But they are not "super heroes", which implies an ability beyond that of a normal human being, which is the point I was trying to get at in the post. 

Day 3 and already a throwaway post

So, following yesterday's post about my broken tooth, today's post was going to be a deep reflection about the importance of self care.

BUT in doing my self care, I went and got my painful tooth pulled. Finally. After almost two years of on again, off again hell.

And so now I am in serious amounts of pain (freezing doesn't do much for me and even T3s aren't putting much a dent in this one). And I can't really think straight. And I've been sleeping on and off since I got home.

So yeah, I'm going back to bed and hoping that I don't choke on my bloody gauze pad and that the pain has begun to subside by morning.

Goodnight, y'all.

Broken Tooth

I have a broken tooth.

I have had it for six months.  It's a wisdom tooth and I keep meaning to make an appointment to get it dealt with but my life never seems to allow me any time to do so.

Healing from dental surgery is more "free time" than I can afford right now. I don't know how or when  to fit it in, nor can I figure out the logistics of how to do it with Jason's work schedule and my work schedule and kids and all the things that seem so much more important than my damn tooth.

But now,  I think it has an abscess.  And it hurts like hell.

So I suppose I don't have much of a choice anymore.

And once again, my plate is so full that the food keeps sliding off.

There is no baseline for me lately. There are only the fleeting moments where I kick up hard enough to catch one big breath of air before falling under it all again.

So that's my blog for tonight, because my head is throbbing and I can't think about anything else.

Anything except the three hours of cooking and cleaning I still have left to do before Monday hits.

Sigh.  Sometimes it can be hard.

They say self care is one of the most important things parents can do for themselves.

Unfortunately,  they don't tell you how to fit it in.

Edited to add: Got my tooth pulled today in an emergency surgery. It took less than two hours total. And so my entire argument of "no time" was a very powerful lie to myself. I'm glad I can be transparent about that in this space and promise to write a better post about it this month.

Rainbow Coloured Walls

Like most parents of Autistic children, I field a lot of the “What is it like?” question.

It’s a particularly obnoxious one since, up until Charlie was born, I didn’t know any other type of parenting. And, even now, the only thing I really know is what it is like to parent my own children. There isn’t really a universal parenting experience- no more for parents of Autistic children than for parents neurotypical ones.

But, I suppose, there are some things about our lives that do distinguish parenting a child with disabilities from the experience of those that don’t. There are some things that we encounter that most of  my friends will never quite have to worry about, consider, or mitigate.

Consider, for a moment, that you are house shopping and you come upon a Magic Genie realtor. He tells you that he can give you your perfect home. It will be exactly the right lay out, exactly the right size, exactly the right location, and in a completely affordable price point…Perfect in every way and exactly the home you have always dreamt of owning.

Sounds like a pretty good deal, right?

But of course, as is often the case with genies (and with realtors), there’s a catch: Your walls can never be painted. They must always be the colour that they are now.

Now, the rookie shopper will tell you: No problem! I can work with whatever.

And they’d be right.  You can make just about any colour work in most spaces, particularly when you can control things like lighting and decorations.

But a more seasoned shopper knows that the colour of the walls is actually kind of a big deal. Not a deal break- again, this is the perfect house- but a big deal, nonetheless.

On top of that, Magic Genie tells you that you don’t get to know the colour of the walls before moving in. And once you are there, you can never move away.

If you can’t agree to these terms, you must walk away from the home completely.

It’s the perfect home, and you are committed to the long-term picture, so you agree.

And in your mind, you start to ask yourself: What will my walls look like?

You think to yourself: Maybe you’ve lucked out and they will be white! White, while not exactly an exciting colour, does kind of go with every thing. There’s an awful lot you can do with white.

In your mind, you start to decorate your white walls.

And you feel secure in knowing that you can work with what you will be given.

But, life isn’t always that easy.

See, there’s the catch: No one gets white.

Every single magic house has a colour of its own, and white is not among them.

Some houses have very pale blue walls. Others have pale sage walls. Others still are pale taupe.

Some are bolder: a vibrant green, a cool lilac, or a serene gray.

Each of these walls has its own personality, and its own flavour. And, despite your best hopes, they will not match perfectly the white décor you had envisoned in your dreams.

But, for the most part, the colour is flexible. After all, there are a wide variety of different colour schemes that work with a butter yellow wall. While you do need to put in a bit of thought and work with the hue that you have been given, you can walk into most department stores and rest assured that you will find a wealth of different options to accessorize and decorate your space.

And, whatever it is, it is a beautiful colour.

***

Now, imagine that your house has a bright red focus wall.

Like it’s more muted and uniformed counterparts, this red wall is beautiful. But it is also extremely powerful. It is extremely present. It is dominant.

And it doesn’t necessary work with as wide a variety of colour schemes.

You will need to think more intensely about how to decorate your space. You will need to consider the particular decorating needs that accompany a strong focus wall.

 Red requires a different amount of mental work to coordinate. It also requires a different amount of mental processing to become accustomed to. It may not be as easy for every one to adapt to a red wall. For some, it may be really jarring and they may try to find ways to minimize the impact of the wall. However, as we all know, a focus wall is called a focus wall for a reason: it’s the focus. Most efforts to minimize the impact will be in vain, and it is generally best to let the wall dictate the tone of the space.

You will want to pick your décor carefully. It will take time to plan out how to best use the space. You may need to seek out specialized shops to find the perfect picture frames and furniture.

But you will find them. But it takes more time, more energy, more thought, and- often- more investment to get the room exactly the way you want it. But you will get there. 

***

Some of us however,  whether through fate or fortune, walk into our new houses surprised to find them painted in extremely unconventional colours.

Lime Green. Aquamarine. Bright Orange. Fluorescent Pink.

And that’s a whole other ball game.

They don’t make a lot of home decorating catalogues dedicated to teaching you how to work with fluorescent pink walls.

Decorating a fluorescent pink space is a challenge like none you’ve ever undertaken in the history of your decorating life. And, at first, you have no idea what you are going to do.

Some people grieve. How could they have agreed to this? They didn’t know! They were fooled! They were lied to! This is not the deal that they accepted.

(And they would be wrong. This is exactly the deal that they accepted.)

These people will spend the rest of their lives trying to figure out how to get out of their contract and either paint their walls or move away.

Others will dedicate themselves to finding ways to work around the pink walls that they find so offensive. They will hang curtains to cover them. They will use blue lighting to try to conceal the colour. But, at the end of the day, the walls are still fluorescent pink, regardless of what they do.

(These people will often wind up frustrated and will never gain a true appreciation for their home or comfort their space.)

Others still will embrace the intensity of the wall colour. They will learn to love fluorescent pink and will spend the rest of their lives working towards trying to perfect that space and find all the accountrements that will enhance the wall’s natural beauty. They become artists, and learn that the pink walls are an opportunity to turn their lives into living canvases.

Is it more expensive? Yes.

Is it more time consuming to decorate? Yes.

Can it be frustrating sometimes, particularly in the beginning when you don’t have an understanding of how to work with the colour? Yes.

Can the intensity of the colour be difficult to manage sometimes and require more energy from you? Definitely, yes.

But…there is a richness and uniqueness and power that emanates from a pink wall.

And the intensity is exactly what makes it so beautiful.

Your home, while unconventional, becomes a life long labour of love, teaching you to open up your eyes to all the colours of the rainbow.

***

Longwinded as it may be, this is the best analogy I can think of to describe the experience of parenting my children.

When I was pregnant, I naively thought that my child would be like a blank white canvas that I could do with as I pleased.

Of course, no child is a blank canvas. They are all bright and colourful personalities of their own, and while you can impact them, you can not change who they are.

Some of their colours are more typical of what we would expect in children. They fit into the moulds we have create more easily and blend successfully with the world around them.

My daughter, Charlie, is not one of those children. Like a bright vividly-coloured focus wall, she is an insatiable force of life that dominates almost every space she enters. Her incredible thirst for knowledge and for interaction is unlike any toddler I have ever met, and she is already one of the strongest people I know.

To parent Charlie is to embrace the richness and boldness of her personality and to build up a world around her that plays to her strengths. It requires a lot of thought and planning, and ultimately, she and I are discovering that her atypicality may not always fit the mould. She is unlike her peers, but she is unlike them in a way that is generally easily accepted- and even admired- by the world. She ‘breaks’ the social mould, but in ways that are deemed socially acceptable.

To parent Sam is to walk into a proudly fluorescent pink house. There is nothing conventional about him, and his beauty isn’t always understood by others. He doesn’t break the moulds- he is apart from them, functioning independently from almost all social expectations.

The difference in time, effort, cost and intensity of parenting Sam in a way that is respectful of his pronounced differences can not be denied. It is not always easy to build up a world around him that compliments and enhances who he is.

And, as amazing as he is, I am always aware that he will never be considered to ‘fit’ the definition of what we consider a typical person to be.

There are people who spend their lives telling me that I must learn to do everything in my power change him, to cover up his differences and try my best to change his colour into one that is deemed more palatable.

But the thing is that I love his colour. I never expected to have an Autistic child, but I have fallen in love with the complexity, the vividness, the unabashed uniqueness of him.

And, like Charlie, while he doesn’t necessarily fit the mould, I am learning to live in a house that is multi-coloured and multi-faceted. I am learning to take the time to really think of who they are, as individuals, in every decision that I make. I am learning that, while the journey is different for both of them, it is phenomenal one well worth the undertaking.

I love my brightly coloured walls. I love that they are outside of the norm. I love that they have made me rethink everything I thought I knew about the world.

I love living inside a rainbow. That is what parenting my children is like. 

They are more glorious than anything I could ever have imagined on a blank canvas.

And that’s what it’s like to parent my atypical children.  

It’s colourful.  

Get Ready...Get Set...Blog!

It's that time of year again: The Summer Blog Challenge.

A blog post a day for 31 days straight. If it sounds easy, trust me, it isn't.

If it sounds entertaining, trust me, it is.

As hard as it is to believe, this will be my fourth summer completing the challenge. That's part of what is bringing me back to it. The first time I did the challenge, back in the summer of 2011, Sam was still barely even a toddler. Now, looking back over the blog entries of the past, I can get a picture of where I have been, how I got there and where I am ultimately going.

Journaling is a fascinating experience of self-discovery.

I won't (and can't!) promise that my posts will be thoughtful or provoking- though I do hope that at least one or two are.  I also don't promise that they will be thorough, well-edited or even spell-checked. I write generally in a free-style on this blog- more with the intention of getting the thought and idea out of my mind than with the intention of doing so with flair, grace, or attention to grammar (though these are things that I am working on, slowly but surely).

What I do promise is that I am going to take the challenge seriously and really push myself to explore some topics that have been nagging at my mind this year; and, trust me, there are a LOT of them.

So hopefully you'll join me on my #SBC2014 challenge and we'll see where the summer winds take us.

The longest response to a comment ever...

A thoughtful comment was made on my last post.

The text of the comment from stillfinditsohard (a blog that I have followed for some time) has been copied verbatim here:

"I wrote at http://wp.me/s2iISl-pardon about this admittedly important but much shorter than it needs to be step. I think it is worth the effort for both your good self and your audience to read what I have to say.

Patting the back of Build-A-Bear when they appear to have only done half a job is not going to do us a favour. Okay, so you have one less (out of thousands) of reasons to fear for your child.

What about those of us who can and do speak for ourselves, and do not live in America? What about us? And that speaks to the most profound division there is between the "parent of a child with autism" bunch and us, the autistic. You get all the attention, we end up suffering because you either jump guns or fail to think through.

Build-A-Bear's severing of ties to Autism Speaks FNA is a good thing. But until they go out of their way to let _all_ of their customers know why, and sever all ties with _all_ anti-autistic hate groups, autistic people everywhere have no reason to celebrate.

The Irish political party that was essentially a part of the IRA had a name that was and still is instructive for the autistic civil rights movement. Sinn Féin, an Irish phrase for "we ourselves". Sam might be a small child now, but there will come a time when he is the same age that I am now.

Thirty years from now, the way in which parental "advocates" behave, the way the movement cheers at a job half-done, and the way the movement fails to understand we are essentially at war, will have people like Sam taking up the same cry. Autistic people want to be spoken for and about by only one group of people.

We. Ourselves."

My comment was too long to post, but I felt really deserved a thorough answer, so I have written it out here.

Hi Dean.

Thank you for taking the time to post. I have read both your comment and your post carefully, and think that you bring up many important points. I really would like to answer them, but first want you to know that your words, feedback and criticisms/critiques are welcome here. I have followed your blog for some time, and have nothing but the deepest respect for your words and opinions.

On to your comment:

You are absolutely right- this is only a small step on Build A Bear's part. I absolutely believe that they owe the Autistic community a public announcement and acknowledgment of fact that this corporate partnership was harmful and wrong.
In my post, I do call on them to do this and, as many others have also done, have reached out them to on their social media platforms and through their email. There is still work to be done.

However, as with all civil rights movements, it is important to acknowledge when steps are made- particularly when these are the results of grassroots efforts. We need to do this both for the offending parties to see that we are sincere in our efforts and genuine in our advocacy. We also need to do this for ourselves. There will always be a much larger fight to fight. But without celebrating the battles, and taking the time to lick clean our wounds, we will not have the resilience it takes to continue working. We have witnessed this with various civil rights movements across the globe. No one oppressed group has fully succeeded in escaping their oppression. Women are still battered and beaten. Racial minorities still discriminated against. The disabled still dehumanized. Rectifying these wrongs and building a better world is a continuous act that occurs in multiple fronts, parallel to each other and working in different ways.

You also raise some points about the Parent of Autistic Child vs. Autistic Person debate. I assure you that I agree with you 100%. It is saddening and tragic that the voices of parents are elevated above those of Autistics of all ages and all abilities. It is my absolutely intention to do everything I can to continue supporting Autistic voices so that mine can fade into the background, where it belongs. I have consulted extensively with my friend Autistic self-advocates on the conflict between wanting to help spread the message of Autism/Neurodiversity Acceptance (I fall heavily into the latter category) and wanting the Autistic message to be resoundingly and overwhelmingly stemming from the Autistic community. I firmly believe in "Nothing About Us, Without Us" and do everything in my power to elevate and amplify the voices of Autistic people when and where I can.

That being said, my son is four. And, like my daughter, I have a vested interest in protecting and defending his rights not only as an Autistic person but as a human being that I love and cherish. I do not (and have never) claimed to speak for him; despite, being non-speaking Sammie is quite capable of communicating for himself and we encourage this communication in any form that it takes.

As I commented on the TPGA page, my blog is a tiny one. I have no idea how to respond to this type of public attention. However, I do believe that if you take some time to read through the rest of my writing, you will find that I am rather consistent in my messaging regarding the role of parents in Autism advocacy. I assure you that I had no idea that my post would be so impactful or so heavily shared, and it was certainly not done so out of a desire for attention. I was simply trying to celebrate a small victory in my community, in the best way that I knew how. Sometimes, the battles matter as much as the war. I do not agree that this was poorly thought out or a 'gun jumping'- rather, it was seizing an opportunity to spread a message of acceptance in the best way I know how to and with the tools at my disposal.

In your post, you also take some pretty strong shots at the entire Boycott Autism Speaks page and group- a page that is run largely by Autistic self advocates who have dedicated their sweat and tears into this movement. I fail to understand what your issue with them is, but can assure you that their efforts have been unceasing. If you believe that there are less passive ways to go about advocacy, I would strongly encourage you to do so. But I would also encourage you to remember that both Malcolm X and Martin Luther King made waves in their movements, using very different messages, mediums and tools. They did not always see eye to eye, but they did both accomplish significant leaps for their community. Advocacy and Activism can take on many forms.

Finally, two points: I am keenly aware that Sam will be an adult one day. I am also keenly aware that I am doing right by him as a parent- I am not perfect by any stretch, but I am raising with love, respect, dignity, and understanding. He is thriving in every sense of the word, and so am I, through his direct influence. We are helping each other to grow and teaching each other wonderful ways of taking in the world. But I have *never* claimed to speak *for* him; not in this post and not ever. In fact, I have been extremely vocal about the fact that Sam speaks for himself. He always has and he always will. I am, at best, a translator- a poor one, oftentimes. It is my sincere hope that I will be able to help him discover tools that are significantly more effective at this than I am. We are currently working on introducing an AAC, and are only engaging in supports that are respectful, consensual and non-harmful.

The final point that I would make is this: I am not American. I am Canadian. We still have a lot of work to do here (and globally, as you pointed out) but thought I would clarify the assumption.

Open Letter to Build A Bear Workshop Founder, Maxine Clark

Maxine Clark, Founder
Build A Bear Workshop



Dear Ms. Clark,

I wanted to take a moment to introduce you to Lili, one of Build A Bear's newest furry friends.

Aside from being an adorable pug, she is dressed up in super hero gear and her heart is filled with courage.

Why is she a super hero?

Because she was built as a reminder of all the daily heroes out there, people who are making change happen in our world just by their very presence. She was built as a symbol of the ongoing crusade for human rights and as a beacon of hope for those who are still battling every day against bigotry, oppression, fear and hatred.

And she was built in celebration; celebration of the news that Build A Bear Workshop has terminated its association with Autism Speaks, an organization that has done tremendous harm to Autistic people across the world.

Autistic people like my son, Sam.

(Edited to add: for an indepth article examining the various issues with Autism Speaks, please refer to this post, written by my friend Michelle Sutton: I will not 'Light It Up Blue'!)

Sammie is a four year old, non-speaking Autistic child who is full of joy, wonder, and total awesomeness from head to toe. :)

And today, for the first time ever, Sam went into the Build A Bear Workshop knowing that he was walking into a space that recognized his humanity and his right to acceptance, dignity, and respect. He walked right in, built himself a bear, gave her a bath, dressed her in her super hero gear, and named her Lili.

As he chose his new friend's furry form, he scanned the wall, carefully taking in the dozens of colourful and interesting furry friends to choose from.

A wealth of options were available, reflecting, in a sense, the diversity of children themselves. Like each custom-made bear, no two children are exactly alike- and it is our differences as human beings that make us unique and exceptional. Each one of us has different likes/dislikes, interests, beliefs, values, abilities, skills, and personalities.

It is this very principle of diversity- that every child should be able to freely choose who their favourite bear will be- that inspired the Build A Bear vision and has allowed it to grow into the successful, international corporation that it is today.

Ms. Clark, your mission statement says it all:

"At Build-A-Bear Workshop®, our mission is to bring the Teddy Bear to life. An American icon, the Teddy Bear brings to mind warm thoughts about our childhood, about friendship, about trust and comfort, and also about love. Build-A-Bear Workshop embodies those thoughts in how we run our business everyday."

Friendship. Trust. Comfort. Love.

Are these not the very foundational principles that human happiness is built upon?

These are the things I want for my child, now and as he grows older.

More than cures, or therapies, or treatments.

I want him to find friendship. True friendship that accepts him for who he is, and encourages him to thrive- not in spite of his difference, but because of them. Friendship that lasts a lifetime and that changes his world for the better. This kind of friendship can not be prescribed. It does not happen by forcing him to be more 'normal'; it happens by creating a world that is more accepting of diversity and differences.

I want him to find trust. This does not happen by violating his personal rights, body and dignity. It does not happen by discounting his voice, and the voice of other Autistics, from the Autism dialogue. It happens by establishing that we, his parents and his community, will keep him safe from harm- harmful therapies and harmful ideas that wound the spirit. It happens by valuing that he has a voice, despite the fact that he does not use words. It happens by respecting that his right to human dignity trumps other people's right to comfort. Trust is an ongoing and fragile process, built upon an established mutual respect.

I want him to find comfort. There are many things in Sammie's life that will make him uncomfortable. There are things that will cause him pain. There are things that will cause him distress. There are things that will cause him fear. My role- my mission as a parent- is to find ways to minimize these difficulties and to help him manage the obstacles that he faces with strength, courage, conviction and a sense of self-worth. This does not mean "curing" him; it means supporting him and strengthening him. It means understanding that disabilities require a holistic approach and that our greatest responsibility is to do no harm- to not cause him or others additional pain in our attempts to "fix" things about him that are not broken. It means helping him become resilient, and always being the 'soft place' for him to land on when things get hard.

I want him to experience love. There are no words that could ever do justice to the amount of love that I have for my children. I will not even attempt to find them. But my vision for Sammie is so much bigger than just me. I want Sammie to find love everywhere he goes. And really, isn't that what most parents want for their children? I want Sammie's heart to overflow with love every minute of every day for the rest of his life. Love of others. Love for others. Love for himself.

And for that to happen, more people need to do as you and Build A Bear Workshop have done. More people need to stand up and say that to love someone is to accept them for who they are. That pouring money, time and energy into trying to find ways to 'cure', 'change', 'conquer', 'defeat' or otherwise 'attack' Autism is to tell Autistic people that they are not worthy of being loved. That they are not worthy of being respected. That who they are as human beings is not valuable.

Ms. Clark, as our family built Sammie's puppy today, watching him choose her name and squeal with joy as he gave her a bath, my thoughts were on you and your organization. On the good that I sincerely believe was in your hearts when you partnered with an association that claimed to be promoting a worthy cause.  Of the betrayal you must feel at knowing that this organization is really promoting harm and is doing so despite the resounding supplications of the Autistic community to change their ways. Of the anger you must feel at knowing that there are people out there who believe that Autistic children aren't worthy of love and acceptance based solely on the fact that they are different.

My thoughts were on this, and on all the work that you still have ahead of you to continue to undo the harm that has been done.

I am so grateful that Build A Bear Workshop has terminated this relationship. I am so grateful to know that the words in your mission statement are true and sincere; that you truly are committed to giving children happiness and joy. I am grateful, and I am hopeful that you will now seize the opportunity to become advocates for friendship, trust, comfort, and love for people of all abilities.

Sammie's new bear wears a superhero cape to commemorate the fact that total strangers can be super heroes in their every day, ordinary lives.

Today, Build A Bear Workshop became part of Sammie's super hero team. I hope you will continue to rise to the challenge and continue to earn your cape.

With deep respect and appreciation,

Sammie's mom.