Tag Archives: autistic

The Complexity of Life and Change

*Emma gave me her permission to write about this.

Yesterday Em was having a tough time.  She has been talking about an indoor playground that closed some six years ago, expressing her upset that it’s now a store and asking that we build a new indoor playground exactly like it.  We have discussed the idea that places go out of business and that we can’t bring them back, we’ve talked about what is required to build an indoor playground, but that it will not be exactly like the one that closed.  We’ve discussed the concept of same and different.  We’ve gone over the preliminary steps needed to be taken in creating any sort of space.  Joe even thought she might like to build a model playground, complete with running water and electricity, but none of this has helped.  She remains very upset.  So much so that I began to feel certain her upset was not actually about this specific playground, but that this playground has come to symbolize loss.

“I want playground.  I want to build it.   Will take out the store and build a different playground has slides and a bouncy castle.”

I explained again that we couldn’t do that.  Em then repeated how she wanted to build a playground and then said, “Bertie kitty can’t eat pancakes.  Bertie kitty, the animal vet doctor, says no.  Might get sick.  Bertie kitty died.”

I nodded my head and said, “Bertie was old, Em.  He didn’t die from eating pancakes.  He died because he was very old.”

“I want to take it out!” Em pulled at the palate expander in her mouth and began to cry.

“I know you do, Em.  But we can’t take it out yet.  The orthodontist will take it out eventually.”

“Soon.  I want to take it out now.  I want to build it.  I want to build new playground.”

It’s easy for me to get caught up in the literalness of Emma’s words.  To get swept up in each upset individually, as it shows itself, veering from the closing of a playground, to the death of my cat, to the desire to have her palate expander removed.  If I take each of these concerns separately and at face value, I can quickly become lost in each one.  This is something I continually struggle with, not just with my daughter, but in life.  I take things pretty literally and often try to compartmentalize each thing so as not to get overwhelmed.  So in instances when Emma seems to be racing from one upsetting thought to the next, it isn’t my first thought to look for the common thread.  But I am fairly certain I’m correct about my interpretation of what’s going on here.  I think Emma is working through a number of difficult concepts that in her mind are all related.  The playground closing and being replaced by a store that holds no interest for her, the death of my elderly cat Bertie, whom she loved, and the palate expander that she dislikes and wishes would be removed.  I could be wrong, of course, but it seems to me they are all connected.  They all fall under the heading of permanence and impermanence, or death.

As Emma learns to communicate better through both typing and verbally, we become better at listening and understanding her, her anxieties are becoming more obvious to us.  As her communication skills increase, so does her obsessive compulsiveness, or so it seems to us.  It’s entirely possible that Em has always had this degree of anxiety, obsessiveness, coupled with compulsivity, but we are only now becoming aware of just how difficult it is and how often it overwhelms her.  Leaping from one upsetting scenario to the next is something I do too, particularly when I am tired.  With Emma it’s all about things that are impossible to have, things that are gone and won’t come back or, as is the case with the palate expander, about change, literally physical change as she looses the last of her baby teeth and her permanent teeth appear.

As we continue to support Emma with her typing, we have noticed she is becoming more verbal.  As she becomes more verbal she is expressing her anxieties, her concerns, as well as her desire to be heard.  The more we listen, the more she has to say.  Yesterday as we worked on her typing, I asked, “Em tell me two things you like doing and one thing that’s hard.”

Em typed, with my hand barely touching her forearm, “I like to bounce on the trampoline.  I like to bounce on the bouncy castle.  It is hard for me to work with mommy.  You could help them work with mommy.”

“Thank you for telling me that, Em.  Who should help me so it’s easier for you to work with me?”

“Pascal.”

Emma and Pascal take each other’s photographs  - April, 2013

*Pascal

Some Thoughts on Accommodation

A year ago I did a crash landing into the world of bloggers, all of whom were Autistic.  I had been looking for them for years, but suddenly, or so it seemed to me, I found not one, not two, but dozens and dozens of blogs written by Autistic men and women in their 20′s, 30′s, 40′s and 50′s.  It was surreal because these people were writing about their lives, giving glimpses into what it is like to grow up and live in a world and society that does not “see” you, yet talks about you and perpetuates misinformation about you with little interest in verifying whether their interpretation is in fact correct.

Pretty quickly after my crash landing I found this ‘post‘ from the blog Radical Neurodivergence Speaking about attending an Autism conference where the keynote speaker said, ”When one family member has autism, the whole family has autism”.  The blogger writes, “My autism is not about my parents or my siblings or my non autistic friends and extended family. It is my neurology. It is not theirs. No matter how much they listen to me, how much they try to understand, it is not about them. It’s a lot easier to protect the martyr mentality when you insist it’s about you, but that’s just not how it is. As long as it’s considered to be our parents’ thing, though, the system will continue to be broken. We keep having to fight for ownership of our own experiences, and that’s not right. It isn’t even wrong. It’s so backwards there is not yet an adjective for it.

Now remember, I was at the very beginning of finding actual people who were talking about their own neurology as opposed to ‘experts’ talking about their interpretation or ideas about a neurology they did not have.  I had to reread that paragraph before I could go on.  ”As long as it’s considered to be our parents’ thing, though, the system will continue to be broken. We keep having to fight for ownership of our own experiences, and that’s not right. It isn’t even wrong. It’s so backwards there is not yet an adjective for it.

I had to get up and walk around because this concept, this simple, and now it was dawning on me, pretty obvious idea was not something I’d really considered before.  I had to sit down and think about this.  ”As long as it’s considered to be our parents’ thing, though, the system will continue to be broken.”  And then I realized something.  I didn’t like what I realized, but I couldn’t tamp it down.  It kept springing back up into the forefront of my mind.  I realized by making autism and my daughter’s neurology about me, I would continue to feel sad and victimized by “it”.  ”It” was this terrible thing that had happened to us. “It” being the operative word.  ”It” wasn’t my daughter.  ”It” was what we fought against.  And by then adding a judgment to my daughter’s neurology (it’s bad) I was limiting it even more and adding a layer of horror to it.  Without meaning to I was making things much, much worse for all of us.  Without knowing it, I was doing the opposite of accommodating “it” I was co-opting it and making it all about ME.

Now before people start saying things like – wait a second, autism DOES affect the whole family, or, but the siblings DO feel x,y and z – I need to state the obvious – of course an autism diagnosis affects the whole family, but affecting the family is different from saying, ”When one family member has autism, the whole family has autism.”  That simply is not true.  The whole family does not “have” autism.  This is not FACT.  Insisting that it is fact when it is not, does not serve any of us, but mostly it is a massive disservice to my daughter and all who are Autistic.

When my father had his horseback riding accident I was nine years old.  It completely affected my outlook on life.  At the age of nine I considered death, hospitals, doctors, what it means to be physically disabled, in a way that my same age peers were probably not contemplating.  Yet I was not suddenly “disabled” because of his accident.  None would have suggested that.  I might have been helped had I seen a therapist to work through some of my fears and later phobias that resulted from his accident, but that is very different from co-opting his experience.  When my father was in a wheel chair, the entire family did not suddenly lose the use of their legs.  My father needed accommodation, ramps needed to be built inside our house where there were stairs, he needed assistance getting into and out of the swimming pool, but the rest of us continued to walk around, ride our bikes, play with our friends and live our lives.  Did my father’s accident affect me, well of course it did, but never would anyone have suggested that because of my father’s disability the entire family was therefore disabled.

We keep having to fight for ownership of our own experiences, and that’s not right.”

Ownership.

We all need and want to be heard.  Parents want their experiences to be heard and acknowledged.  Siblings want their experiences heard and acknowledged.  But that should not be at the cost of our Autistic children.  ALL people deserve to have the accommodations they need.  Just as my father required ramps built in our house, my daughter needs support to communicate without the added pressure or guilt that she is causing the rest of us hardship.  We need to reframe the conversation.

More terrific posts from Radical Neurodivergence Speaking:

I shouldn’t have to beg

I’m on your kid’s side too

Autism and child abuse: Both for April. Oh IRONY.

More Toxic Lessons Learned

Em

Friendship – Another Myth Regarding Autism

My friend Ibby is here staying with us for a few days.  It’s a working visit, but that doesn’t take away from the joy we are all experiencing because she is here.  Who says work cannot also be a blast?

Emma and Ibby 

Em and Ib

I’ve spoken of Ibby many times on this blog (here, here, here and here to link a few) because Ib has, more than any single human being, done more to change my views regarding autism and my daughter than any other person.  I know that may sound hyperbolic, but it’s actually not.  It’s true.  Or as Ib would say, “Fact.”  And it is.  Fact.  Another fact is the gratitude I feel toward her.  Just tremendous gratitude for opening my eyes, not just to one thing, but to multiple things.  As an example, here is just one little thing that happened as a direct result of Ib.

Ib gently urged me to watch the documentary Wretches and Jabberers.  When I did not immediately watch it, she reminded me and again encouraged me to rent it.  I think she had to remind me three times, before I actually sat down and watched it.  And because I watched W& J, when I presented at the Autcom Conference last fall I went to hear Harvey, Tracy, Pascal and Larry’s presentation on supported typing and because I went to that presentation I had the idea that maybe, just maybe it might be the thing that could help my daughter communicate more reliably and because I had that idea I approached Pascal and asked if he was ever in New York City and because I asked him that, Pascal began helping us learn to support Em and because we started helping support Em I began to understand what presuming competence really meant and on it goes like the “If You Give a Mouse a Cookie” books, one thing leads to another and another and suddenly you look back and see that this person, this one person has influenced another (me) and the ripple effect is so far-reaching and beyond anything anyone could have imagined.

The Wretches and Jabberers example was just one example of one tiny thing Ib had a hand in.  I could name at least a dozen or more much larger examples, like the conversation (documented ‘here‘) we had about language and my daughter’s specifically and how sometimes she says things that seem completely unrelated to anything that’s going on, but how it is related, even if it’s not related in any way I can identify.  Sometimes it’s a leap-frog kind of association, often there’s an emotional component too, so when she suddenly blurts out, “No not going to see motorcycle bubbles” I now know Em is thinking about visiting her Granma in Colorado or is anticipating an electrical storm or watching the 4th of July fireworks display from the ranch. There’s excitement and maybe some anxiety and even fear and eager anticipation.   I know this now because Ib has helped me understand and has taught me how to “lean into” her words and not try to do a word for word translation.

Ib and I have been working on a book together about Autism, Inclusion and Friendship.  As a result I am thinking a great deal about friendships and relationships in general what they mean and how they develop and how the very definition of friendship is about inclusion and support and accommodation and giving each other slack and cheering each other on and appreciation and gratitude and being there for the other person.  It’s a mutual give and take and it’s reciprocal.  Relationships are basically what make this world and life worth living.  Ironically friendship was the thing I wrote about on this blog’s first entry.  It was what I wanted my daughter to experience, but feared she might not ever have, because I believed what I was being told about autism and that myth surrounding autism and being alone.

Over three years ago, when I started this blog, I wrote, “…hope that we may help our daughter Emma, now 8 years old, lead a life that includes deep friendships and the powerful bonds that result from being able to communicate with one another.  A life that is enriched by our interactions..  this is what I dream of for her..”   Who knew that not only would my definition of what constitutes “communication” completely change, but so would my mistaken ideas about my daughter’s ability to have friendships.  As an added plus Ibby is not only in my life, but in my entire family’s!

So yeah, Ib is really important to me.  I love her dearly; we do all the things friends do when they get together: confide in each other, laugh, hang out without having to talk, hang out and talk and talk and talk, cry, and when we aren’t physically together we stay in touch.  But as with all really close friends, Ib is in my mind and heart regardless of where she is.  I think about her and when we haven’t spoken for a few days we reach out to each other and connect, sometimes briefly if we’re both busy, but she’s always “here” in my heart.

As Ib has said, “Friendship is Fact.”

Vanilla cake with vanilla icing – made by Emma, Nic and me 

Ib's Cake

 

“Will She Be Okay?”

“Will she be okay?”  This was the question that went unanswered for the first nine years of my daughter’s life.  

“Will she be okay?” I asked every autism specialist, neurologist, pediatrician and anyone else who seemed vaguely knowledgable.  This question actually had almost nothing to do with the child I saw before me and everything to do with how I felt.  I so wanted reassurance.  I so wanted and needed someone to tell me she was going to be okay, whatever okay meant.  Whatever world “okay” occupied, I wanted to know, really know that my child was going to be embraced and fully in the “okay” of it all.  

“Will she be okay?”

Like the children’s story about the baby bird who’s fallen from its nest and asks all manner of creatures it meets “Are you my mother?” I desperately wanted someone to put their arm around me and say those seemingly magical and reassuring words – “Yes.  I promise.  She’s going to be just fine.”  But none did. So on I went, searching, trying every therapy, remedy, every crazy combination of vitamins, diets, homeopathy, naturopathy, healer, energy worker, cranial-sacral therapist, shaman, neurologist, developmental pediatrician, speech therapist, occupational therapist who held out the promise that all would be okay if only I did whatever it was they believed would make her “okay”. 

“Will she be okay?”  

When we finally ended our campaign to cure our daughter, our campaign to help her accelerated.  But this didn’t happen in a vacuum.  We had support.  And the support we were given came from other Autistic people. In retrospect, had I known my friend Ibby, I would not have asked “will she be okay?”  Had I met Tracy Thresher, Larry Bissonnette, Jamie Burke, Jennifer Seybert or any of the other people I’ve had the good fortune to physically meet, I would not have felt the need to ask repeatedly whether my daughter would be okay, because I would have known she already was.  That question would not have occurred to me to ask, because these people, many of whom do not speak or more often than not do not speak, or as in Ibby’s case speak, but when stressed, is unable to, are living their lives fully and they certainly know joy.  Each of them has grown up in a society that underestimated them.  All of them have been doubted and had to prove their intelligence over and over to those who are unwilling to see the evidence before them.   

“Will she be okay?”

We, as a society, must stop forcing people we deem different or less than to prove their worth.  We, as a society, must look inward and start asking ourselves, not “will my autistic child be okay?” but “what can we do to accommodate Autistic people so that all can flourish and be included?”

In the end, that’s all I really want for both my children.  I want them to feel a part of a society that supports them. 

“Will my child be okay?”

She IS okay.  Right now at this moment.  It’s up to the rest of us to recognize this.

Em singing “Clumsy” for Ibby and Emily last night

Em's performance 

When Insights are Speculation

One of the things I’ve felt particularly confused by is why my daughter sometimes resists communicating.  My thinking has been – why would she resist doing the one thing that will help her get along in this world more than perhaps anything else?  The other day, I had a moment of clarity.  I came a step closer to “getting it”.  And now, I think I understand.  Not only do I think I understand, but I am able to identify and relate to that resistance, because, I realized, I do it too!  There are a number of things I resist doing, even while knowing that if I just did them I’d feel better and would be able to weather the vicissitudes of daily life a bit better.  I’d be happier, calmer, less anxious, and yet knowing this, intellectually understanding that this is true, does not make my resistance any less.

know being mindful and in the present gives me clarity and a sense of calm, I do not otherwise have.  I know this, and yet find it extremely difficult to be completely present for more than moments at a time.  My daughter has little problem with this.  In fact, Emma is far more comfortable in the moment than anywhere else.  I remember when we were inundated with therapists coming and going during those early years of fear and panic.  Richard and I used to comment on the irony that Emma was completely present and in the here and now far more easily than we were and yet we were constantly encouraging her to talk about tomorrow or yesterday or any number of other topics that had little to do with NOW.    We were pushing her to move away from the bliss of this moment to join us in the fear and anxiety of the non-present moment, all for the sake of the larger picture, which in our minds was to have her join us in our world.  Even though our world was fraught with expectations, hopes, dreams, wishes and the inevitable disappointment those things often bring.

We used to joke that if we could bottle what Emma came to naturally we would have no cause for worry.  And that really is the crux of most conversations.  They are usually not about the here and now.  They are almost always about some other time, some other idea, some other person, some other concern that is not now.  And yet…  

I resist being in the present and Emma resists being pulled out of it.   And yet, we non-Autistics continue to insist our world is better, or superior even as many spend thousands of dollars going on spiritual retreats, reading books about meditation and going to workshops to teach us how to “sit”.  So the question I am now asking myself is this:  Can I find the grey area of encouraging Emma to communicate with me, something that is difficult for her and pulls her from the bliss of now, while giving her plenty of time to be present and just be?  And what about my own resistance?  Can I learn to meet Emma in her blissful place of now and resist the urge to go off in my mind to somewhere else?

Of course there’s always a danger in interpreting my daughter’s behavior as any one thing.  Her resistance, like mine, is probably made up of many things, and this could be just one reason.  Or I may have this entirely wrong and her resistance is about something that hasn’t even occurred to me.  Or perhaps it isn’t resistance at all and is something else or I may find, next time we type together and when I ask her why, she will tell me something I hadn’t considered.  And that’s the beauty of all of this, I can’t and don’t know until she tells me.  Until then it’s just speculation and me projecting my stuff onto her.   So that’s more for me to be aware of – seeing when and if I do that and understanding that I am.

Henry and I sharing a moment of laughter at Emma’s antics

H & A

Trashing Common Misperceptions About Autism

“Trashing Common Misperceptions About Autism and Autistic People and Creating a New World” – that’s what I first wrote as the title for this post, but it’s a mouthful and given the limit on characters on twitter, I revised it.

We just returned from Tampa where Richard, Em and I went to a screening of Wretches and Jabberers and to stay with my friend Lauri and her family, or as Em referred to it, “Have sleepover with Henry three.”  Which is an apt description because we spent three nights there.  Four days and three nights of paradise.  Four days and three nights of being with another family and a whole group of friends, new and old who didn’t judge, but rather embraced, a truly inclusive group, coming together, eating, laughing, connecting, talking and typing.  It reminded me a little of my experience at the Autcom Conference this past fall, except it was far more intimate and this time my husband and daughter shared the experience with me.  For four days we were given a glimpse of paradise.   A little peek into what our world could be like, but isn’t…  not yet.

Many people believe, erroneously, that Autistic people aren’t as interested in having friends, developing relationships or crave having mentors as we, non-Autistics.  Those people have never seen Henry’s smile when he is around his mentor and friend, Tracy.

Henry & Tracy@USF

Those people who doubt, didn’t witness Emma’s tears last night when we returned home and she made me promise we would see Henry again and have another “sleepover” with him and his family.  They did not witness Henry and Emma’s laughter and joy from being around each other.

Em and Henry hanging out together by the pool

E&H -Friends

Larry takes Emma’s photograph – perhaps the single greatest compliment a person could receive.  (Amy Sequenzia is in the background.)

Larry takes Em's photograph

They weren’t there to hear Emma tearfully say last night, “Please Mommy.  Go back to Florida tomorrow?  Play with Henry again soon?”

Just because someone cannot or does not express with words their love for another in the way we might expect, does not mean they do not feel it.

Many believe that if a person doesn’t speak, or speaks with a great deal of scripting and echolalia they are not interested in communicating or have little to say.  Those people have never witnessed a typed conversation between those so-called, “non-speaking” or atypical speakers.

Harvey, Tracy, Pascal and Larry, the stars of Gerardine Wurzburg’s documentary, Wretches and Jabberers

H,T, P & L.

Emma, being the consummate performer that she is, could not resist occupying the seat Larry vacated during a break at the University of Southern Florida, the day before the screening, where she wrote for all to read – “My mom and dad hope to meet more people like Larry and Tracy.  Wow(*!)  I am stirring up a crowd(*.)  time to work with people at home in new york to show them it is the intelligent emma there…”  *punctuation was added by me for the purpose of this post and indicates the smile Em gave and the pause she took between typing “crowd” and “time”.

Harvey, Tracy, Pascal & Em @ USF

Em Types@USF

Many people are surprised to learn that even those who do not speak can have wonderfully nuanced senses of humor, can enjoy deep, meaningful friendships, have a great deal to say and are often far more profound than most speaking people are in any given 24 hour period.

A conversation between Tracy, Henry and Emma about getting on board the “inclusion typing train” the night before the Wretches and Jabberers screening.  Tracy is to Henry’s right and out of the picture frame.

H &E type

Tracy, Henry and Emma make a “pitch” to Academy Award winning director, Gerardine Wurzburg who was standing nearby!

Em types

Em takes Gerry Wurzburg’s photo 

Gerry Wurtzburg

Many people assume Autistics have intellectual limitations commensurate with their “severe” and “moderate” labels, yet given appropriate accommodations this idea has been proven wrong again and again.  Yet another reason those labels are not only meaningless, but actually damaging.

Tracy types in answer to a question from the audience about the impact the documentary and meeting monk Hogan has had on his life.

Tracy @ W&J screeening

Many people believe inclusion of Autistics in schools will “bring the other children down” and that inclusion in society will be harmful, when the truth is the opposite with many studies proving this.   (Why this even needs to be proven, is something I am still trying to wrap my mind around!)

Mary Schuh (director of development and consumer affairs at the National Center of Inclusive Education Institute on Disability) and Henry at the Wretches and Jabberers screening at the Tampa Theatre, April 6th, 2013.  Henry is now attending the public school near his home.

Mary & Henry

These are only a few of the beliefs people have when it comes to autism and Autistic people.  Yet, if people were able to witness a weekend such as the one we just experienced, I guarantee their minds would be changed and we would be one step closer to creating a new world.

*Emma approved this post.

Those Who Influence..

There have been a number of Autistic people who through their writing or by meeting them have greatly influenced my thinking and radically changed how I view autism.  Through their writing and/or our direct interactions I began to question everything I thought I knew.  I began to see that so much of the information I’d been given was false.  It was because of these people that I have a level of understanding about the problems with *functioning labels, the problematic issues surrounding *segregating Autistic children from other non Autistic children not only in the classroom, but in life.  I have a better understanding about how *important the words used to describe autism and Autistic people can do tremendous damage or, conversely shift the conversation to one of better understanding and progress.

*I have put related posts below for each of these topics.

All of this brings me to Ibby.

Ibby was/is someone who radically changed my thinking, and continues to change how I think about autism and my daughter.  I have written about Ibby before ‘here‘ and ‘here‘.  We met at a disabilities conference not quite a year ago, where she was presenting.  Ib has changed my life.  I don’t know how else to describe someone who is not only a close friend, but who has patiently advised me, explained things that I didn’t understand, didn’t judge me, never shamed me, but instead was kind, loving, compassionate and very, very patient with me.  For those of you not familiar with Ibby, I hope you’ll go to her blog and read her writing.  If there is one thing I would like to see change regarding autism”awareness”, it is that the public become familiar with Autistic people like Ibby, who are tirelessly speaking out and patiently trying to bridge the massive gap between public perception surrounding autism and Autistic people, and reality.

There are a number of people who have been crucial in influencing me, Ibby is one of them.

Related topics

 

What I Wish I’d Been Made Aware of When My Daughter Was Diagnosed With Autism

What follows are some of the things I wish I’d been told (and given) when we learned Emma was Autistic.  These are the things, in retrospect, I wish all those doctors, specialists, pediatricians, therapists and people who dedicate their lives and careers to autism had told me, but did not.  I believe our lives would have changed dramatically had we been told even a few of these things.  It is my hope that for those of you who may be at the beginning of your journey with an Autistic child, this list might help you avoid some of the many, many mistakes we made and a great deal of unnecessary pain.

1.  Seek out the work of Autistic people ~ most of the work I’ve listed was not available when my daughter was diagnosed, but it is now.  Take advantage of all that is out there, these people are leading the way.  If I had to choose just one thing that has had the single greatest impact on my life and the life of my daughter, it is these people.  My gratitude to all of them doesn’t come close to covering how I feel.

a)  Blogs by Autistic people:  (This is a partial list.  To see more blogs go to the blogroll ‘here‘ as well as each of these blogs often feature blogrolls as well ~  A Quiet Week, Autism Experts, Autistic Hoya, Chavisory, Cracked Mirror in Shalott, Emma’s Messiah Miracle of Music, Evil Autie, Gareeth, I’m Somewhere Else, It’s Bridget’s Word, Just Stimming,  Kyriolexy, Musings of an Aspie, Olliebean, Paula Durbin-Westby’s Blog, Radical Neurodivergence Speaking, thAutcast, The Third Glance, Tiny Grace Notes, Yes, That Too

b)  Watch these two documentaries:  Wretches and Jabberers and Vectors of Autism

c)  Read books written by Autistic people (again this is just a few of my favorites):  Barb Rentenbach’s, I might be you, any book written by Judy Endow, Peyton Goddard’s, i am intelligent, Loud Hands: Autistic People, Speaking, any book written by Tito Mukhopadhyay, S.R. Salas’s, Black and White, Michael Scott Monje Jr.’s Nothing is Right and A Field Guide to Earthlings: An autistic/Asperger view of neurotypical behavior

2. Autism is not a disease.  Read Don’t mourn for us by Jim Sinclair.  This may take some time for you to understand.  It’s okay.  Get the help and support you need so you can better help your child.  Try to think of autism in the same way you think about any groupings, a Mac and a PC, fiction, non-fiction, memoir and young adult, a shirt, a pair of pants, shoes and socks, a microwave and a gas heated oven.  Autistic, Neurotypical, Allistic, (or my personal favorite, coined by a friend) NT-NOS, we are all human beings.   Try not to judge one over another.  Judgment will not help you help your child.

3.  Presume Competence.  (This ‘post‘ helps explain what presuming competence means.)  If a therapy and/or professional does not approach your child with a presumption of competence, please consider finding one who does.  Tremendous long-term damage can come from not presuming competence.  Rethink how you view communication.  Listen to your child, not just to words, but to body language, facial expressions.  You may be surprised by the ways your child is communicating despite not being able to do so verbally.  Teach her to point with her index finger, first with support if needed and as time goes on, fade the support. Give her the appropriate tools and support so that she can learn to type or communicate by pointing to a letter board.    There are many wonderful iPad apps that can help with this.  Begin with sequencing games and colored tiles, or if she’s musical, notes.  Join them together to make patterns.  Show her first, have her mimic.

4.  Do not speak of or about your child as though they cannot and do not understand or hear you  (read Barb Rentenbach’s book for more on this).  This is something we did without thinking for years.  Sadly it is not the only regret I have, but one of many.  Still it is worth repeating.  Chances are your child can and does understand what you’re saying even if they do not show any signs that you recognize.

5.  Throw out everything you think you know and question everything.  There is a massive amount of misinformation/myths disguised as truth and fact regarding autism.  You may hear people say things like “They are in their own little world,” or “they are imprisoned behind their autism” these phrases are perhaps an accurate reflection of what non-Autistic people feel about the Autistic person in their life, but they serve to divide rather than unite and ultimately serve none of us. Be suspicious of anyone who says they know what causes autism or how to “treat” it.  Disregard any organization that describes autism and your child as tragic, an epidemic, a burden or any other word generally reserved for warfare.  If you read or hear something that causes you to feel fear, walk away, it is most likely inaccurate and intended to make you afraid.  None of us are able to help our children when we are terrified.  Fear can cause us to make decisions we will later regret.

6.  Set your child up to succeed.  My daughter is extremely sensitive to criticism.  Saying “No!” or criticizing her does not help her learn, but instead makes her feel badly about herself.  Encourage her with smiles and by asking her to try again.

7. Do not try to make your Autistic child behave like a non Autistic child, instead encourage your Autistic child to be the very best ______ (fill in your child’s name) they can be.  For more, read ‘this‘.

8.  Avoid comparing your child to any other child, Autistic or otherwise.  I have struggled with this one and continue to.  All I can say is, this is a work in progress. I hope one day to “know” this and refrain from doing it as it gets me into “compare and despair” thinking faster than anything else.  Emma is Emma.  She is best served when I remember this fact.

9. We parents are fallible.  We will make mistakes.  I’ve made dozens.  I wish I hadn’t made quite so many.  But I have.  If there is one thing I know without a doubt it is this – I will make mistakes, I am human.  I can admit my mistakes, tell my daughter how sorry I am, make a living amends to her by doing everything in my power not to repeat the mistake and continue to move forward without beating myself or anyone else up.  As my wise mother once said, “Show and tell your children over and over how much you love them, and one day they will forgive you.”

10. Get to know Autistic adults.  One of the single biggest misperceptions surrounding autism is that autism is only seen in children.  Autistic adults are often our best teachers and  many of them are leading the way so that our children’s lives might be better than their own.  These people are courageously and tirelessly pushing back against the deeply ingrained prejudices, biases and misperceptions that are rampant within our society.  (See #1)  It is my goal to honor these people who have beaten a path ahead of my daughter so that she may more easily live in this world that so often will not and does not accommodate her or give her what she needs to flourish.  They are speaking out, let’s all get behind them and give them the microphone so that more can hear what they are saying.  One day, the person holding that microphone might just be your child!

The year after Emma was diagnosed ~ 2005

Em - 2005

Autism Awareness?

It’s interesting to note that the word awareness, when paired with the verb “to be” as in – be aware, is easily visualized and thought of as, “beware” which dramatically changes the meaning.  It no longer is a word of benign information, but instead is a word of caution and fear.  I do not think this is a mistake.  I know it’s cynical of me, but I think Autism Speaks, the single largest organization involved in Autism and the creator of the “Autism Awareness” campaign, chose their wording carefully.  I’d like to think I’m giving them more credit than they deserve, but for a company that spends more on PR than they do on actually helping families and those who are Autistic, I don’t believe I am.

My awareness of autism has dramatically changed over the years.  It has changed because of the information I’ve found and been given.  In the beginning, my information came from books, autism organizations, various professionals, a couple of neurologists, our pediatrician; surprisingly the more “credentialed” the person was, the more likely they were to admit how little they actually knew about autism.  In retrospect this was my first real lesson in awareness – beware of organizations and those who believe they “know” all about autism, whether that is the cause or which specific methodologies, treatments or therapies your child will be best served by, because they do not know, despite how vehemently and persuasively they may speak.

As time went on, I became increasingly aware of my own misery.  The common misery supposedly shared by us parents, dominated the conversations surrounding autism.  I became fixated on the “fact” that autism was the cause of my misery and set about removing it from all our lives.  This is where awareness took me.  This was what I knew and understood.  But this is not the sort of awareness I want to be a part of.  This is not the kind of information I wish I’d gotten, nor is it the information I hope other parents and families will receive.  Those first few months after receiving the diagnosis are critical.  How we talk about autism and by extension our Autistic child changes all that we then do and where we focus our energies.

Autism did not cause me to be miserable.  I was concerned and I was scared, but my daughter’s neurology was factually not what frightened me, it was what I was being told about her neurology that terrified me.  Had someone said to me when we were still trying to get her out of diapers when she was seven years old – “it’s going to be okay, here are a couple of different things you can try, but remember most people do get out of diapers, eventually” I would have felt a little calmer.  Had someone said to us when our daughter was six years old, “read to her age appropriate material, teach her age appropriate lessons” I might have felt confused, I might have had a great many questions, but I wouldn’t have felt the fear I felt when we were informed she could not possibly be placed in a school with her same age peers.  Had someone said to us when we first received her diagnosis, “presume competence, she can and will learn, but she will learn at a different pace, she will learn differently than you might expect” I might have felt concern, but I would not have felt the kind of despair I felt when I questioned whether she was capable of learning at all.

If we want to have more awareness about Autism then let’s have it come from those who are actually Autistic.  Because if you are like me, these are the people who will change your views and shift your mind away from the “tragic” to the far more helpful information that might actually help you help your child.  The kind of information that opened our minds to different forms of communicating, different ways of learning, all those things that have actually aided us in helping our daughter.  Our judgments about her neurology and all it meant to us and her, did not help us do anything but feel more fearful and miserable.

Below is a small list of people I know and am in touch with.  I’ve provided a link to their blog, book(s) or film to each of their names.  I will feature more people who have helped me in my growing awareness during this month of April.  I’ve separated those who can speak, but depending on the circumstances lose speech, with those who mostly do not speak, but ALL communicate.  Want to become aware?  Read their words.

Non-Speaking Autistic:

Amy SequenziaBarb Rentenbach, Peyton Goddard, EmmaTracy Thresher, Henry Frost, Tito Mukhopadhyay

Autistic:

Ibby Grace, GareethKassiane, Paula Durbin-Westby, Landon Bryce, Julia Bascom, E., Renee, Judy Endow, Michael Scott Monje Jr.

The Audio Book is Finished!

Barb’s audio book is finished!  Ol’ Barb had me quoting Shakespeare, Stephen Hawking, Ralph Waldo Emerson and many others, as well as her own words…  It was an incredible process, with me wearing headphones, seated in front of a microphone in the sound room (or as I called it – the cave), while Barb and Lois (with Chad, the wonderfully upbeat and accommodating sound/tech guy sat in an adjoining room with a huge picture window so we could see each other) gave me direction, sometimes with hand signals, but more often with Barb typing her instructions, which Lois then read.  Chad alerted me to any technical issues that arose such as when a word sounded scratchy or slightly garbled or if I forgot a word or said a word incorrectly.  All in all it took more than 20 hours, probably more than 30 all told to record.

I am told the audio version of I might be you will be available for purchase and your listening pleasure by next week, but I will leave a link here when I have one.

In other news… I am doing a webinar on Parenting Toward Acceptance, Monday April 1st at 4:00 PM  for DIR Floortime, ICDL with Brenda Rothman, Mother and Blogger – Mama Be Good and Melody Latimer, Mother, Blogger – AS Parenting, Autistic Self-Advocate and Director of Community Engagement, Autistic Self Advocacy Network, ASAN.  I will leave a link Monday morning when I have one.  Until then have a lovely weekend everyone!