Tag Archives: Jamie Burke

Transitions

We returned home last night from the ICI Conference (Institute on Communication and Inclusion) at Syracuse University and though it was wonderful to see those family members we’d left behind, being “back” is hard.  I don’t do transitions well. As a kid I would eagerly anticipate having a sleepover at a friend’s house weeks in advance, only to return home depressed.  It is still like that.  It often takes several days before the weight of sadness, that accompanies returning from a place where I’ve had a terrific time, is lifted.  Even though all that excitement, fun and the constant interaction with lots of people is exhausting.  Yesterday I was so emotional I knew I was in overwhelm, but we had a whole day of presentations ahead of us, so I ploughed through.

When I reach this point of exhaustion and overwhelm I become emotional.  Anything can set off a torrent of tears.  If someone says something even remotely critical the tears begin to flow, watching a movie, saying good-bye, tears and more tears; it’s as though the social dam I’ve constructed gets chipped away until there are too many cracks to hold the feelings back.  Everything becomes intense, my friends become a lifeline, it’s no longer just nice to see them, I feel dependent upon them, as if without them, I may die, words spoken with anything other than kindness, feel like knives, music induces feelings of pain and euphoria all at the same time.  I am hyper aware of and easily overloaded with the feelings and interactions and the sheer numbers of people.  This is how I’ve always been.  I understand this about myself.  I am able to function, barely, but not without lots of tears.  So much so that Ibby handed me her plaid handkerchief at one point, causing me to cry even louder and harder and then came over and hugged me as I sobbed on her shoulder.

I become hyper aware of the injustices of the world, I feel both ecstatic to be among so many wonderfully accepting people, while also horrified by the “real” world we live in and must soon return to.  The disconnect starts to feel impossible.  I begin to believe the change so many are trying to create will never come about.  I slide helplessly into despair.  And then I bolster myself up by remembering other people’s words.  At yesterday’s keynote address with Jamie Burke, Sue Rubin, Tracy Thresher and Larry Bissonnette, Tracy typed,  “Larry likes typing out poking fingers on hurtful labeling to push his wrecking ball toward brick walls of structures of old thinking.  What I intend is to push my own ball of fiery passion of change to the global stage and shatter the glass like Pascal did in the city.  Pascal clumsily broke the water glass; Tracy intends to go about the Inclusion Movement more like George Clooney.  Charming Tracy’s plan; worldly connections repairing injustices is the wretches-in-arms plan.”

I have the choice to join all those who are using their “own ball of fiery passion”.  It feels less like a choice and more like an honor.   We can join each other.  Linking our arms, united in making society understand that to include is in everyone’s best interests and all will benefit.

I am ending with photographs from the last three days spent immersed in a world that accepted, appreciated and above all else, presumed one another competent…

Ibby
Ib

Christine Ashby
Christy

Rosemary Crossley
Rosie

Em types with Leah
Leah& Em

Me, Amy & Ibby after our presentation, “Blogging to Communicate”
Ariane, Amy & Ib

Em takes the stage
*Em

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Ibby & Larry Bissonnette
Ib&Larrry

Douglas Biklen and Me
Doug &Me

Doug Biklen and Ibby
Ib& doug

Doug Biklen & Amy Sequenzia
Doug&Amy

Mark Utter during the Q & A after the screening of his film, I am in here
Mark Utter

Anne Donnellan
Anne Donnallan

Typing with Emma
Me & Em

Sue Rubin
Sue Rubin

Tracy Thresher
Leading Man Tracy

Emma’s String
Em's String

Em, Mark Utter & Ibby
Em, Mark & Ib

 

Acknowledging Other’s Achievements

When I asked Emma if I could post this video of her doing her latest “catch”, she said, “Yes!  Post on blog!”

I’ve written about Emma perfecting her “catch” ‘here‘ and ‘here‘ and I’ve mentioned too, the hours of practice it took, for her to get to this point.  It’s important you understand how hard she’s worked.   She didn’t suddenly climb up a ladder, grab onto the trapeze, swing a few times and then catch someone else’s arms one day.  She has been practicing this for years.  Just as she didn’t suddenly begin typing sentences or one day open up a book and start reading it, Emma has worked hard, incredibly hard and for anyone to suggest otherwise is doing her and others who are accomplishing wonderful things a tremendous disservice.

Far too often we hear stories of children and people who, seemingly miraculously, began reading grade level material or began typing their thoughts or began playing an instrument and to us, the reader, the person who has just now discovered this story, this video, this whatever it is, it seems it all happened “suddenly”, “miraculously”,  “overnight”, yet this is rarely the case.   Years and years of practice, of hard, hard work have taken place before that moment when we become aware of the person.  How many times have we heard about someone being an “overnight sensation” with lots of exclamation marks following those two words.  How often do we hear of someone who has accomplished incredible things, we marvel at them, but we also dismiss their tremendous accomplishments with our belief that it all happened “miraculously”.

The years leading up to those success stories are not so interesting to most of us.  We don’t really want to know about the daily grind, day after day of showing up to perfect or master a skill.  When we apply these same beliefs to people with disabilities we are doing them a tremendous disservice.  Not only are we ignoring the difficult work, the hours and hours they put, in practicing and honing their skills, we are dismissing all that hard work with words like “magical” and “miraculous” and we are ignoring just how hard that work is.   There is nothing miraculous about someone accomplishing something after putting in hundreds and thousands of hours of practice and hard work for years.  Their accomplishment is not an indication of our failure.  We do not need to dismiss someone else’s achievements to make ourselves feel better.

All those people who have gone on to prove themselves as more capable than most people gave them credit for are NOT examples of miracles.  They got to where they are through HARD WORK.  To all of you,  Emma Z-L, Carly Fleischmann, Tito Mukhopadhyay, Jennifer Seybert, Jamie Burke, DJ Savarese, Barb Rentenbach, Amy Sequenzia,  Emma Studer, Paige Goddard, Amanda Baggs, Henry Frost, Larry Bissonnette, Tracy Thresher, Sue Rubin, Alberto Frugone, Richard Attfield, Nick Pentzell, Rob Cutler (there are too many people to list) to all of you who have worked so hard, who continue to work every single day to communicate and do all that you do, your hard work is acknowledged and appreciated.  I need you to know how much I appreciate the days, months, years, and for some of you, decades that each of you has spent showing up, day after day to do what does not come easily.

You are leading the way for my daughter.  You are showing me how it’s done; I cannot thank you enough.

Emma practices climbing the rope wall

Nic & Em

Taking Action ~ Presuming Competence

A full transcript of Richard’s Blog Talk Radio Show is now available for any who want it by clicking ‘Blog Talk Radio Transcript‘.  I am trying to add it to Facebook, but have run into problems as the file is too large to add to “notes” and I can’t add it even when changing it to either a txt file or an .htm file.  So unless someone knows how to attach a large file, (12,540 word count) I am not sure how to get this on Facebook.  I may need to break it into several smaller segments, which would be too bad.  Please advise!

Lots of people have been asking questions about “presuming competence” and how that applies to either their child or someone they are working with.  So I am adding links to a couple terrific articles that I’ve found helpful.

Kathie Snow, entitled: PRESUME COMPETENCE:  Challenging Conventional Wisdom About People with Disabilities.

An interview with Douglas Biklen, winner of the UNESCO/Emir Jaber al-Ahmad al-Jaber al-Sabah Prize to promote Quality Education for Persons with Intellectual Disabilities and Dean of the School of Education at Syracuse University.

Presume Competence – a PDF from the Peal Center

Presuming Competence ~ By Douglas Biklen and Jamie Burke (Jamie, who we met this past March, just graduated from college and types independently! Yay Jamie and congratulations!!)

I am just beginning on this road of “presuming competence”.  There are others who are far ahead of me, many of whom have been kind enough to email me privately with their experience, strength, wisdom and encouragement.  There are many of you who are directly affected by society’s inability to “presume competence” and all that means to you and your life.  Many of you I know, others I am just getting to know, some I don’t know, but hope to know, but all of you are living with the consequences of a society that does not believe in a basic right we should all have granted to us – a presumption of competence.

What follows is a list of things I try not to forget that have helped me presume competence, please add your own thoughts, as I am well aware many of you are further along than I am.  I am still learning!

*I hesitated publishing this post because I do not want anyone to take this as a lecture or that I think I have all the answers.  I don’t and it isn’t.  I made the decision to publish this because many people have contacted me privately asking for help in presuming competence.  These are the things I do and continue to do, tools really, that I’ve personally found helpful.

In order to presume competence I have to:

1)  Presuming Competence is a “practice”.  Much like anything I want to get really good at, I must practice this.  It is very much an action.

2)  Examine my preconceived notions about autism and what that means to my child.  For me I made a list.  Everything that comes to mind, no matter how awful I may feel about myself for thinking such things, I must “out” myself so that I can come face to face with ingrained beliefs, prejudices, things I assumed, but couldn’t know, fears… a full inventory of all that I once believed and may still believe about autism and Autistic people.  It is helpful to share this list privately with another trustworthy human being who will not judge or condemn.  By the way, this is not something I will ever share publicly.  None need see it as it would be hurtful to many and judged by others.  But for my progress it is important that I be able to admit these things so that I may change.

Once I have my list and I’ve confided in someone I trust, I must be willing to examine and dismantle any remaining destructive beliefs.

To do this I must ask myself:
How is this belief continuing to serve me?
What am I afraid of?
What do I think will happen if I let go of this thought?

I have to be willing to face my fears.  I have to be willing to honestly and without judgment acknowledge my own thinking.

3) Question everything.  Literally, question everything.  Do not take my word for any of this, try it yourself.

4)  Be curious, ask questions, seek advise from those who are ahead of you.  This has been key as there are many people who have been doing this much longer than I have.  Talk to them.  Many people are living with the results of being presumed incompetent.  Read what they are writing.  Listen to them, learn from them.

5)  When in doubt ask.  When in doubt don’t act.  Doing nothing is often far better than doing something or saying something that I’ll later regret.  If I am not sure how to proceed, it may be the least dangerous option to not continue until I can figure out how best to approach the situation.

6) We all make mistakes.  It’s okay.  It’s part of the human condition, no matter what our neurology.  I make mistakes all the time, so do my children.  It’s okay.  Keep moving forward.

7) If my daughter isn’t communicating in a way that I’m able to understand, I need to try a different method of communication.  All human beings seek connection.

8) I cannot and do not speak for either of my children, nor do I own them.  They are not extensions of me.  They are their own people, with their own unique personalities.  It is my job as their parent to encourage them and find the best ways to support them so they can flourish.  Any embarrassment, shame, fear or assumptions about who they should or shouldn’t be are mine.  They have little to do with my children as much as I may believe otherwise.  These are things I am responsible for working through privately.

9) Realize I don’t know.  There is just a great deal I don’t understand.  The only way I can hope to understand is by admitting that I don’t.  I don’t have all the answers.  I am learning.  My daughter is my best teacher.

10) Listen.  I have to be willing to listen to her.  I don’t mean just verbal language, I mean “listen” in a more holistic way.  Listen to every aspect of her.  What is she trying to tell me?  Often I will not immediately be able to understand.  Sometimes it may take years before I will, but it is more important that I continue to try even when I don’t understand than deciding she isn’t trying to tell me anything.

11) Patience.  This is one of the single most difficult things for me to practice.  I am, by my very nature, incredibly impatient.  Impatience serves me in some ways, but in approaching my children, impatience almost always hurts them and me more than it helps.  I have to “check my impatience at the door” as a friend of mine once said.  If I am unable to do that, it’s probably best if I take a break and come back when I’m able to.

This list is not complete… there are many more things to add… but they will have to wait for another day…

Soma Mukhopadhyay's First RPM session with Emma ~ 2013

Soma Mukhopadhyay’s First RPM session with Emma ~ 2013

“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