Tag Archives: diversity

What We Would Have Done Differently

What We Would Have Done Differently Had We Known What We Know Now is the longer version of the above title for this post.

Someone left a comment on a post I wrote about a year and a half ago – Want to Know About Autism?  Ask An Autistic.  In the comment they asked a number of questions and because they are questions others have also asked, I’m writing a post devoted solely to answering them.

“What would you have done with Emma if you had not fought your seven year war? How would you have spent that time with her knowing what you know now? What do you think would have been of most benefit to Emma when she was still too young to type? How would you have gone about learning assuming competence?”

“What would you have done with Emma if you had not fought your seven year war?”

The “seven-year war” they are referring to is one I describe in that post detailing all the things I did upon receiving my daughter’s diagnosis.  To contemplate what we would have done differently had we known what we know now is both exhilarating and painful, but I’m going to give it my best shot…

The short answer is – we would have done everything differently.  The longer answer is vast, so vast I don’t know that I can do it justice in just a few paragraphs, but I will try…

Once we were given her diagnosis I would not have done any of the therapies suggested other than occupational therapy.  I know this will strike many as radical, even negligent, but I am speaking very specifically about my daughter.  Right from the beginning, knowing what I know now, would have changed all of my thinking, reactions and response to my daughter.  All those years spent trying to “help” her were years marked by fear, distress and worry.

I know now how sensitive Emma is to other people’s emotions, how she picks up on all of that easily and how distressing it can be for her.  So there are things I would have done that actually have nothing to do with Emma, but that would have helped me be a better parent to her.  Reducing my fear and constant worry would have been helpful to all of us.  In order to do that I would have had to ignore pretty much everything I was being told about autism and what that meant for my child.  The information we were given in 2004, the year Emma was diagnosed, was presented as fact.  And, as it turns out, it was incorrect.  I cannot think of a single thing we were told that did not prove later to be wrong.  Think about that for a second…  Every single thing we were told was incorrect.  Everything.  (Richard, correct me if I’m mistaken about this.)

A quick aside –  this is where, the way our society is structured has done none of us any favors.  If we lived in a truly inclusive society where autism was not denigrated, but was considered just another neurology, no better or worse than non-autistic neurology, where there was no judgement placed on either neurology, but more was treated as fact, where everyone came into contact with both neurologies on any given day in a variety of settings, “autism” would not be viewed with the fear and worry and even terror that it currently is.  When I say “inclusive” I am using that word literally and not code for “tolerating” or “understanding” or even “accepting.”  I mean a society where all neurologies are treated equal, without comparison of one, which is thought to be superior, to another considered inferior.  An inclusive society would mean “accommodations” would be embedded into our daily lives seamlessly and without fanfare, just as the many accommodations non-autistic people enjoy without even noticing them, do.

I would not have sought out the advice of the slew of doctors and specialists we carted her off to.  I would have surrounded her with music, singing, dancing, lots and lots of movement, gymnastics, swimming, trampolines, trapeze, art, literature, poetry (much of this we actually did do.)  Had Soma begun her center at the time of Emma’s diagnosis, I would have begun learning RPM and implemented Soma‘s suggestions for very young children right away.   Beginning with isolating the index finger to point independently and moving on to presenting written choices, for everything and anything – “do you want some M-I-L-K or do you prefer J-U-I-C-E?”  Writing each letter, while saying the letters out loud as I did so.  Encouraging her to point to the two choices I wrote.

There were many things, looking back, that we did right, things we did for both our children, such as getting her on skis when she was just three years old, horseback riding, lots of hiking, carrying her in a back pack, Emma loved being carried in a Kelty pack so she was able to view the world at the same height as me.  We took the children to the theatre, puppet shows, kids concerts, and traveled on airplanes when they were both babies.  I began brushing their teeth the minute that first tooth came in, I cannot tell you how grateful I am that I did that.  I began flossing their teeth the instant a neighboring tooth appeared.  I read to the children and provided both of them with lots and lots of books.  We exposed our children to art and literature; these are all things I would not have changed.

“How would you have gone about learning assuming competence?”

Presuming competence is ongoing.  It’s a practice, a mind set and it requires a leap of faith.  Or at least this is how I have come to view it.  Presuming competence is less about an idea and more about doing.  It’s an action, one I must be constantly mindful of and vigilant about doing moment to moment.  My past thinking is so ingrained, changing that thinking is something I must work hard at all the time.  First I must become aware that I have ingrained thinking that is not presuming in my child’s competence, second, I must accept that my ingrained thinking is unhelpful and hurts my child, and third slowly, slowly work to do, and  think about, things differently.

I’ve written about presuming competence ‘here‘, ‘here‘, ‘here‘ and ‘here,’ but I will just add that this is very much something I continually struggle to do better.  To peel back the layers and layers of misinformation and assumptions that get in the way of being completely present in a way that is nonjudgmental and most helpful to my daughter so that she can flourish is not easy, but it is the single best thing I have strived to do.  It requires actively ignoring the more common thinking about autism and what that neurology means.  It means actively questioning everything I am told by people who present themselves as experts.  It means listening, really listening to my daughter.  It means sitting with the discomfort that I have done so much of this wrong.  It means forgiving myself for my mistakes.  This is the path I find myself on at present.

And truthfully it is Emma who is leading the way, my job is to follow, listen, learn and cheer her on.

Emma ~ January 29th, 2014

Emma ~ January 29th, 2014

The Magic of Connection

At a certain point during Richard’s radio show  the other night, where he was featuring Moms, he asked me about those years when we were determined to find a cure for our daughter.  I didn’t want to take up time on the show to talk about all of that because there was so much to cover, but also because it makes me really sad to talk about it and I also know it is hard for many of my Autistic friends to hear, two of whom were guests on the show and many more who I knew were listening!  I try hard not to live in regret, but I’ve done things that I really DO regret.  Things I really do wish I could go back and erase and do again differently.  More than anything, all those therapies and bio medical treatments we did, fall into that folder labeled “Things I wish I could do over.”

My reluctance to talk about all of this the other night on the radio wasn’t because I don’t think it’s important as much as it’s really painful to talk about and I know, for many of my friends, people I love dearly who happen to also be Autistic, it is very painful for them to hear me talk about those years, all those years when I was so intent on curing my daughter.  It may remind them of their own upbringing.  It may bring up all those devastating feelings of being unworthy or that they were somehow damaged or diseased, or any of the other hurtful words people use when discussing autism, that hurt them.   So to my Autistic friends, please skip down to the final paragraph.  The last thing I want to do is cause more pain and suffering to those I love.

At the time, after Emma’s diagnosis was given, I believed autism was something that could be “treated” the way one treats a disease.  Only it isn’t a disease.  But at the time I thought things like vitamin supplements , homeopathic remedies, therapies like ABA and diets could actually remove the “autism”, that these things would somehow transform her brain from an Autistic brain to a non Autistic brain.  I know it may sound over the top, even ridiculous to many, but at the time, I wanted to believe and so I bought into the idea that autism could be ‘removed’.  The concept of someone being pressured into learning to “pass” as non Autistic and the massive emotional and physical toll that inevitably takes, was not something I knew about at the time.  It never occurred to me to wonder what the fallout might be or how my own child’s self-esteem might suffer as a direct result of what I was doing and saying.

Over time, as I kept trying different things, which culminated in going to Central America for stem cell treatments, I continued to believe, being the very best mother I could be, meant doing everything I could to “remove” her autism.  I believed all those words that are used to describe autism: disease, affliction, epidemic and crisis.  Autism was BAD.  Autism meant all kinds of things and none of them were positive or beneficial.  So that’s what I pursued – a cure.  And I pursued a cure with the same dogged persistence I now apply to changing how autism is viewed by others.  Where I once was determined to change my daughter, I am now determined to change society’s views of autism and, it must be added, society’s views of Autistic people.

You cannot talk about autism without talking about Autistic people.  Yet people do all the time.  They talk about autism as though their words will have no affect on those who are Autistic.  But you can’t do that. When we talk about autism we ARE talking about our Autistic children.  We ARE talking about our Autistic friends.  We ARE talking about Autistic people.  What we say, how autism is depicted, DOES impact those who are Autistic .  It does directly affect how others then treat them.  To pretend that all the derogatory language used has no direct effect on Autistic people is ignoring that fact.  And this is where all of this no longer is just about my daughter and the risks I took and the impact my actions have had on her.  This is about something far bigger than any one person.  This is about a segment of the population who are Autistic and the fallout they must cope with from all of us talking about them as though it wasn’t about THEM, but instead was about a word – that word being – Autism.

Toward the end of the radio show, Lauri Swann spoke of how her son, Henry developed a relationship with his mentor Tracy Thresher and how transformative that was for him.  I reflected on how magical it was for Richard, Emma and me to visit Lauri and her family during the screening of Wretches and Jabberers this past April.  We reminisced about the evening before the screening, when we all went back to Lauri and Russ’s home and everyone sat around their dining room table typing to one another.  The only word I could come up with to describe that visit was “magical“.  And it was, because like the Autcom conference last fall and the Syracuse conference this past winter, being in an atmosphere of inclusion, where every single person is treated with the same respect as anyone else, where all are treated equal, is magical.  How did we move so far from those words in the Declaration of Independence ~ “We hold these truths to be self-evident, that all men are created equal”?  How did we get to this other place, where an evening like the one I’ve just described is considered out of the ordinary?

Now, sitting here writing this post, I am thinking about two more magical days and evenings when Ib came to New York City and stayed with us.  Ib is like family.  My children adore her.  My husband adores her.  I feel honored to know her, let alone call her my friend.  I don’t know how to talk about all of this when lines are drawn, when words are used that separate and divide.  I can’t do that and I don’t want to live in a society that does.  What people do not understand fully, or cannot completely appreciate, is this – when we stop dividing people into categories of us and them – we open ourselves up to the experience of being united, of really feeling that indescribable magic of connection.   The beauty of belonging.  The joy of interacting with our fellow human beings and rejoicing in our diversity.  There IS magic in that.  This is what I wish all human beings have the opportunity to experience.  This is what I hope I will live long enough to see occur on a grand scale.

Henry & Tracy during our magical visit with Lauri’s family

Henri & Tracy

Adrianna, Amy Sequenzia, Em & Me
Adrianna, Amy, Em and Me

Nic & Ib on the High Line

Nic & Ib

Diversity Abounds

It's Spring!

Spring at the New York Botanical Gardens!

Epidendrum

Orange Epidendrum ~ The Orchid Show at the New York Botanical Gardens

Phalaenopsis

Pink Phaleanopsis

Dendrobium

I can’t remember what the name of these orchids are.  Dendrobium, perhaps?  Richard gave me one years ago.  

I love orchids.  When I went to Thailand almost two decades ago, I was surprised to see orchids growing like weeds on the sides of the roads.  Something that is seen as exotic here in New York City was tossed into the backs of pick-up trucks in Bangkok.  Something that is thought difficult to grow, given the right climate flourishes in other parts of the world.

As I looked for an orchid to take home with me, I thought of diversity.  I thought about how some orchids require just the right light, just the right amount of water and soaking and humidity and how others require much less, but once its needs are met, all can and do flourish; just like us!