It Begins With My Father

Emma – This morning

 

Yesterday’s post inspired more thought.  I have often asked myself why?

Why did I believe all those specialists, doctors and “Autism experts,” particularly as I have always been so wary of authority figures?  Why didn’t I question the specialists, why did I engage in a war for so long?  Why wasn’t I one of the parents who saw through the autism = tragedy model?  I have always been somewhat of a rebel, what happened to that rebellious streak?

The answer begins with my father.

My father had a horse back riding accident when I was nine years old.  He was just shy of his 50th birthday.   It was a Wednesday.  I was home sick with the flu.  For years afterward I blamed myself for his accident.  If I had put up a bigger fuss, maybe he wouldn’t have left.  If only I’d been sicker he would have stayed home with me.  If only I had begged him to read another chapter from the incomprehensible book he’d been reading to me, if only, if only…  But that wasn’t what happened.  He left.  He did not come back as promised.

The next few weeks are a blur of images and sensations.  Sounds of my mother crying behind her bedroom door.   My grandmother arriving in a dramatic swirl of lavender and rose perfume and silk, her hair perfectly brushed, the grey curls delicately framing her beautiful features, her gnarled, arthritic, fingers turning the pages to one of my school books as she helped me with my homework.  The afternoon I yelled, “I hate you” to my mother who dropped the rolls of toilet paper she was carrying to the floor.  Her receding figure disappearing behind the door to her bedroom, their bedroom, now half empty.  The rolls of toilet paper, partially unfurled, lay in disarray at my feet.  My fury, shame, and horror, tangled and confused, waiting for an acknowledgment I was incapable of giving, instead I stormed into my bedroom and kicked the drawers of my bureau, leaving the mess on the floor in the hallway for someone else to pick up.  My feelings, I learned much later, were not as easily left behind.

Visits to the hospital.  Doctors in white coats, clipboards, a red light next to my father’s bed, the beeping emanating from a monitor overhead, his life reduced to one thin jagged line on a screen.  The needles inserted into his veins, pumping clear liquid contained in bags held by poles and hooks into his damaged, broken body.   The nurse who crackled as she moved, her shoes squeaked as she approached.  The smell.  That horrible, unmistakable, antiseptic smell that burned my nostrils and pulled at my stomach, making me worry I might vomit.  The emotionless, grave, tones used by the doctors, carefully offering opinions as though they were a given, as though fact.  The statements, each a warning, a flag being hoisted up the mast of hopelessness –  “He may not make it.”  “He may be paralyzed for the rest of his life.”  “He will never walk again.”  Each pronouncement proven wrong.  Each learned statement shown up for what it really was, nothing more than a thought.

My father confounded them all.  He, alone, it seemed to me at the time, had risen up from the dead, shown them their stupidity.  He was underestimated time and time again.  For decades, through sheer force of will, determination and hard work, he showed the medical profession, and me, what was possible.   And yet, even my father eventually succumbed to a wheelchair the final decade of his life.  I saw first hand the prejudices, the attitudes of people who came into contact with him. And while his was also a disability, it was of a very different kind from autism.  He and by extension, I, never “accepted” it.  His neurology was unaffected as his legs gave out.  He needed support, yet proudly refused help.  When he died, “his” doctor refused to come to the house, saying my father was no longer under his care because he hadn’t been to see him in so many years.  We were forced to call 911.  My father had no respect for the medical profession.  He had proven them wrong.  His life was a testament to that.  He believed in self reliance.  He believed in himself.

When we were given Emma’s diagnosis, without thinking, I knew what I had to do.  I, too, would confound all the naysayers, those who said, nothing could be done.  Those who grimly wrote evaluations, itemizing my daughters deficits with matter of fact, clinical words.  Her vibrant personality reduced to a critique, her intelligence, not applicable, not even a number as she was deemed impossible to test.  I would show them, just as my father had.  It was the beginning.  I didn’t know it at the time.  I didn’t realize I had chosen the wrong road to go down.  I didn’t see that my initial, knee jerk reaction to her diagnosis was correct after all.  The word “autism” wasn’t what was wrong.  It was the information and interpretation of what that word meant that was wrong.   If you’d told me this at the time, I would have responded in rage.  I would have told you, you were wrong.  I would have told you I could save her from the diagnosis, when what I needed to do was save her from the misperceptions surrounding the diagnosis.

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56 responses to “It Begins With My Father

  1. This post evokes every sense and carried me with you through your journey. I am now standing beside you in spirit, cheering you on as you let the voices of the doctors dim and your own strengthen. I remain convinced as we raise our children the most important letters after a name are, M-O-M.

  2. o prolific one, of shapes and shaping, I know those well. Are you well?

    • I am working on a chapter for a book I hope to one day actually finish. Yesterday’s post was an attempt to sort through some of the past and offered me today’s topic of why. The why is more complicated and this post is but one part of that answer. So that’s my long winded way of saying, I am well.
      I tweeted you already, but I loved your Unshattered post. Now that I’m in front of a computer I am going to reread it now. Will leave additional comments directly on your blog.

  3. Having worked with doctors for many years of my working life as a research biochemist, I can testify that many, many doctors are doing worthwhile work and coming up with accurate diagnoses. Yes, they can be wrong, and yes, the will to survive plays a big part in a person’s well-being. But there’s a reason why the medical profession is called a “practice”. That’s what has been going on for centuries, but there has been progress, and especially when the disabled person him/herself enters the picture, as autistics are doing with communicating their own stories, then the medical practice can develop new diagnoses, new ways of handling cases in which so far they have been floundering.

    When your father was still in a full body cast, he said one day “saddle my horse”, and I answered “are you crazy?” But he was insistent, so I saddled his horse, helped him into the saddle, and he rode about 100 yards. Each day he extended the distance, and once the cast was replaced by a brace he could actually ride for an hour. Eventually he started walking, and by the following December when he returned to an appointment with his neurosurgeon and his orthopedic surgeon, they both were amazed at his progress. (In fact the neurosurgeon took his entire family down to a riding facility near Carmel for their Christmas vacation!)

    Subsequently riding on specially trained horses has been developed for a whole spectrum of children (and adults) with neurological and spinal cord disabilities with great success. Tell a child that she/he has to do 25 knee-bends every day, and they’ll never do it, but put them on a horse and it happens automatically every time they post in the saddle.

    The medical practice is improving, but doctors, like ministers, are not God.
    And we cannot expect them to do everything, or sometimes even do one thing right. We must do it ourselves.

  4. I can’t understate how much what came before shaped my attitude towards my son’s diagnosis. Before my daughter was born, I had already had a miscarriage and a stillbirth. She was on life support for six of her first eight weeks. Her needs were great, worries were many, and her developmental timeline was not standard. When my son was born ten years later, I had the luxury of experience and perspective. He was healthy and happy. Everything else seemed like a minor detail.

  5. I hear what you are saying….there are so many times I quash my inner voice because I feel I will get shot down or the person I am thinking of speaking to about it is a dr. or someone whose status I feel is way more important than mine….so I button up. I remember questioning the dr. about vaccines before my daughter was born. I was told that is just internet stuff and don’t listen to it. Not entirely sure it caused anything for Brett but will always wonder if I had listen to my gut feelings on that, maybe he would be able to talk…….In any of these situations I think we all “Monday morning quarterback”….so to speak. We can always look at things in hindsight and wish we maybe would have done things a little differently. That being said, I think it is the journey that has to be lived before we can truly appreciate when we get to that peaceful feeling we had longed for. You may not have reached that feeling if you hadn’t went about things that way initially. Who knows??? What matters most….is where you are at in the here and now. We can never change the past. Enjoy the Ariane that you have become and now feel so at east with…….

    • I went through a long period of asking myself – did the vaccines exacerbate a pre-existing issue? Could all the vaccines have pushed what would have been a learning disability into autism. Did the vaccines cause her intestinal problems, did the vaccines make things harder for her. I have since spoken to some of the smartest people working in the field, not one of them believes vaccinations could have done that. Not one. As one mom said, “I’d rather have an Autistic child who is alive than a neurotypical child who is dead.” Without vaccinations so many of our children would have contracted deadly diseases. Diseases we will (hopefully) never witness in our lifetime.
      But I understand the impulse to ask those questions.
      And yes, enjoying my family and life in this moment!

  6. Becky is so right. It’s who we are now, and what we can do now that really matters. Perhaps hindsight helps us in our present-time perceptions, but blaming ourselves doesn’t. Emma is lucky to have such wonderful parents, and I am lucky to have such a wonderful daughter and son-in-law.

  7. I don’t think I’ll ever get past her diagnosis. To me, autism DOES equal tragedy. She is not one of those high functioning, quirky kids who will end up being a college professor someday.

    My daughter will never live a normal life. Ever. How is that not tragic?

    I know I don’t have a crystal ball to see what the future holds. I know there might be possible treatments in the future that could benefit her. But as things stand right now – despite our best efforts, she doesn’t “live” in our world, and never has.

    I love her with all my heart and soul. God knows I do, I’d die for her tomorrow if it made her better. But as her mother, I don’t feel like I’ve ever done right by her. I just can’t get out of “battle mode” – I keep trying, and trying, and trying, to make her “better”. Anything so that she’ll have a normal life. There is nothing I would not do or try.

    So yes, to me, autism is tragic. I’m sorry, I hope to someday change how I feel about it.

    • Angie – Did you see this comment on the “Autism = Human Rights Issue” post from a couple of days ago? Peyton, I must remind you, is nonverbal. She did not learn to type until she was in her early twenties. She was called retarded. She wrote to Kate who wrote the piece Scarred and she allowed her mother to reprint it on my blog – “Kate–Decades of sad scarring wastes I, as re-tortures re-terror I. Quest I re-sweeted, awesome eases, but I wear scars feared far far far. It is my treed tread. It feels too queasy to try tears that salt my scars. So I point my queasy to heart heal by helping readers understand. It was why if we today tell of the scars we sad share, there tomorrow cherubs hopefully will grow knowing no scars. Yes, let’s try. I’m trying to out my testy by writing “treasure all.” I’m thanking you for lifting I with your sweeping tread powerful sharings. I’m readed we cared certain can here help others. Trying, Peyton”
      Peyton was abused, raped and tortured. Yet in her must read book, i am intelligent, she writes of forgiveness. Read her book, Angie.

      And then there is this comment from Life Skills Teacher who wrote to you, Angie, on the Belly Go Bang-Bang post –
      “Angie,
      I don’t know if you’ll see this comment, but I’m an adult on the autism spectrum, and I am also a teacher. I’m certified in Severe Disabilies K-12, and I currently teach high school to students with complex communication challenges.
      I’d be happy to talk to you about my own experiences or the amazing things my students are learning and that some of my graduates have gone on to do.”

      Just as a reminder, read Amy Sequenzia, the nonverbal self advocate who writes at Ollibean – http://ollibean.com/2012/08/20/amy-sequenzia-friendship-and-respect/
      If you have a kindle, buy Carly Fleishmann’s book and any book by Tito Mukhopadhyay.

  8. Another beautiful post, Ariane. Angie, I also highly recommend Peyton, Carly, Amy, Tito,too. Having autistic adults as mentors and friends have changed Henry’s life, it’s changed everything for the better for all of us. Also read Doug Biklen’s ” Autism and the Myth of the Person Alone” . It is one of my favorite books..contributing authors like Tito, Sue Rubin, Larry Bissonette, Alberto Frugone, Jamie Burke, Richard Attfield, Lucy Blackman, all non-verbal (jamie now has speech, but types too) Their perspectives are invaluable. We were told H might never walk (he did at 4) would probably never talk( he talks with his iPad).
    H says it looks like he isn’t “engaging” but he is, he always is. Sometimes what he feels is so intense he has to “chill on youtube” (his words) . Sometimes he wants so desperately to talk/type but his body does not cooperate. Sometimes he wants to just listen.

    • Lauri, thank you so much for commenting here! I’m so glad you mentioned Douglas Biklen’s book, I’m in the middle of rereading it, taking lots of notes! It is absolutely fantastic. I’ve mentioned before, but it needs to be repeated, the documentary with Larry Bissonette – Wretches and Jabberers – is a MUST see and is on Netflix. Such a terrific film and is another look at “non-verbal” Autistics.
      I love how Amy describes how her facial expressions do not match her feelings. I’ve heard other Autistics discuss how upon meeting someone if they do not make eye contact, people assume they don’t see them and how erroneous this thinking is.
      Thanks again for reaching out, really appreciate it!

  9. Angie as far as how is your daughters autism is not tragic you know your daughter best of course. I know only what you have said here but one thing I will say about the notion that you daughter is not high functioning makes it tragic.

    I know a lot of “low and medium” functioning (I hate that way of putting it so much) who are much happier than the people you view as primarily quirky. I know quite a few people who are currently considered high functioning, like myself who often long for the options we had open to us before people began to expect things from us. The year I am having I so wish I could return to a time when no problem was so big that several thousand circuits of the basement in my big wheels couldn’t fix it.

    How your daughter winds up in the distance future no one can know. However even if she stays functioning at a similar level to now are there things that make her happy? Until recently I worked for 24 years in respite care. When I was physically healthier I had a variety of clients all “low functioning” for whatever condition they were labelled with. I never met a single one who didn’t have things that gave them more joy or peace than other things. Preferences and a personality. Something to start with. Some of them would never progress. Some of them would distressingly regress but it wasn’t all tragedy.

    I will never live a normal life. Sometimes I cry over it because I would have dearly loved at least a few parts of that normal life like a child of my own. Sometimes I cry because the way my autism interacts with my depression and even my arthritis (not realizing I am in too much pain well past the point I should have stopped makes my life much harder than seems fair or reasonable.

    There’s a choice involved though. I know my life if anything is just going to get harder for reasons not solely due to my autism. I could view it all as some huge tragedy that is only getting worse and has reached the point where if it were a movie disbelief could no longer be suspended. I could view it like that and curl up and give up and it would all still be my reality but nothing would be gained by my having to live like this at all.

    Every child and adult no matter how severe they seem or even are to a degree of medical certainty is still a human and alive and as part of that has some capacity for the things that make people human. I looked after one little boy who was blind, deaf, paralyzed and the bulk of his activity was quite literally seizure activity. Still he was more relaxed in the tub and would smile and gurgle if you rocked him so like everyone he had things that made him happy and not so happy. Was his life harder for his parents? No doubt although that’s not the view point they expressed actually. Was it just tragic? I don’t think so. He still is alive and hasn’t become anything grand and still requires around the clock care but when I see him around town he mainly seems happy so at times I envy that.

    I am sure Angie you do right by your daughter. Right doesn’t have to mean making it possible for her to be not autistic if that’s how you define it. You love her and you care for her and you have dreams for her and a sense now of those dreams having been taken. She and you are still young enough to dream new dreams. All that sounds a bit trite but I do mean it. Perhaps as a mother you can’t ever get completely out of battle mode but maybe you can shift the battle you are fighting.

  10. Ariane, so happy too, I love your writing. I have commented and not sent numerous times because of my own insecurities. I admire really admire your honesty. Wretches & Jabberers is also on itunes which you can put on your or your child’s iPad. Henry loves having it on his iPad. He can tap into it at any time:) W & J changed Henry’s life. Literally. It’s a long story, but I had seen the trailer and was obsessed with because we had never been around anyone that typed to communicate ( at the time H used proloquo2go and typed for academics but not for “upper thinking”) Ollibean brought the Green Mountain Men to Tampa for screenings and q & a . The guys, Larry , Tracy, Harvey and Pascal came over to our house for dinner. Henry and Tracy had the most beautiful, pure, instant connection. We sat around the table that night and much of the next 72 hours while H typed with Tracy and Larry. There were also amazing screenings and Q & As , that helped enlighten so many people that just didn’t get it, but the time at our house was life changing for H. Tracy and Larry ( and Harvey, Pascal and Gerry) have continued to nurture, support and mentor H in ways that are really magical. I haven’t talked about all of this very much because I’ve wanted to protect H’s privacy, but with H’s permission I will( and of course Tracy and Larry are very public figures) it’s important for others to know this type of mentorship happens and is happening every day.

    I have written this amid soccer pick ups, dinner, and homework, so please forgive any inconsistent rambling (but that happens when I’m alone,too:)

    keep doing what you’re doing, it’s making a difference in such a beautiful way.

    Lauri

    • Lauri – You had Larry and Tracy over for dinner?!! *Gasp! These two are “celebrities” in my book! 😀
      Wretches is just an amazing documentary, amazing. I also really appreciate that you brought up mentorship. We ALL need mentors in life. ALL of us. I don’t care what your neurological makeup is. Mentoring and having mentors is crucial. Exactly what you are describing for H. but also in no small part for you too, is what I envision when I think of an ideal society. I cannot wait for Emma to have an Autistic mentor. I dream of this for her actually. That you have found such a thing for your son is brilliant.
      One last thought, if there was a mentoring program in place, where each time a child was diagnosed an Adult Autistic was self appointed to them, much like a social worker is, how different our perceptions of autism would be.

      • They are such exceptional humans. It was a weekend of incredible intellectual and philosophical conversations, my then 11 year old H, was staying up until midnight, holding his own far better than I was. It was truly one of the best weekend’s ever, not only because I was beyond happy for Henry to have this connection, but because I love the guys so dearly, too. I think it would be wonderful to have that mentorship early on. Tracy and Larry have been mentors to me, too, and not just about things related to autism, but art, philosophy,etc. The only bad thing about spending so much time with them, is leaving them 🙂 In the film, when Nayoki’s mom is crying at the elevator..this is how I feel. I love being surrounded by their light and goodness, where everyone is accepted as they are. Pascal and Harvey are extraordinary amazing humans, too. Henry is very passionate about the time he spends with Tracy, he really he looks up to him. We went to Vermont to visit last summer, and I did not think Henry would leave:)

        • Meant to tell you, when Nayoki’s mom cries, I was crying right along with her.
          I can only imagine your trip to Vermont. I would not have wanted to leave either. This experience is one I hope Emma will one day have.

  11. Ariane… and everybody 🙂

    I cannot help but be impressed with the compassion and support in the comments – regardless of perspective. Thank you for that Ariane; for setting such an open and positive tone, and welcoming the dialogue. That is what we need in order to build understanding for those who process and experience the world differently!!

    Hugs,
    Leah

    • Thank you Leah. I don’t think I need tell you how important you have become to me, but I will anyway. I cannot tell you how much I appreciate meeting you and connecting with you. For those unfamiliar with Leah, she has a blog – Thirty Days of Autism – http://30daysofautism.wordpress.com – a must visit blog, she is an educator, a mom, wife and good friend. She also has a terrific sense of humor!
      XX

  12. Wonderfully put everyone! To Angie, tell us what a day with Marissa is like……Like Gareeth suggested, is there anything that you can tell makes her happy, content. My Brett is non-verbal as well and is 8 years old. Are there days that are more difficult than others, you bet. Have I experienced things that have hard to witness and deal with….you bet. Just as I have with my daughter who does have autism. Kids! :O) Our typical day is pretty laid back though and I am not sure if you get those moments with Marissa. I imagine if you don’t, that is making things even more difficult. That is physically draining. Do you have any assitance with her? Family or friends that can help even if just for a few hours? It is totally acceptable if you don’t wish to answer any of these questions, I would just like to get to know you both a little more. Brett is overall an easy going kid and does find happiness in things and I know if he didn’t….if I couldn’t figure out what it was, it would be frustrating. I think reading Peyton’s book would help you see where we are coming from because Peyton’s mom went through many dark times while caring for her but she got through it. She was where we have both been though and she isn’t ashamed to admit that. I think that with acceptance of who our children are in the here and now helps to bring that peace within ourselves. It gets tiring thinking of ways to fix everything all of the time. There are times that I am actually jealous of Brett and his ability to just enjoy life as it is for him. He is so pure. I know that is easy to say though when you have support and a child that is easy going for the most part. I DO GET THAT. I don’t ever want to tell you HOW you should feel because I don’t walk in your shoes…..I think we just want to help you see that even when you think she is unhappy or tuned out etc…that it just may be that she is listening and understanding and wanting those same things that all of us do….respect, love and understanding to name a few. Just from reading Peyton’s book and Carly’s blog, I have changed my whole perception….I now speak WITH Brett believing he understands me and treat him as an 8 year old boy…not a baby. I give him that respect because he deserves it. I never did that as much before. I would talk about him like he wasn’t there and made a lot of presumptions for him or about him which wasn’t fair. I try my hardest now to remember that he should be treated as I would any other little boy that age. I do believe he will communicate with me some day in either spoken words or typed words. However it comes, I believe it will come. I have seen too many examples of kids who appear “severe” yet once they get the opportunity to show us their thoughts via their form of communication, we discover they are in fact very intelligent and wonderful kids with dreams, senses of humor etc….there are just too many examples of it happening for me to assume it will never happen for Brett. It will…he is young yet. If you feel like you want to answer any of my questions, please do. I bet you find that people will chim in who have had similar experiences and yet they are able to forge ahead. I know everyone that regulary posts here and of course Ariane, want to help in anyway we can!!! I am sorry for writing so much! 🙂

    • Thank you Becky for writing about all of this. I really, really appreciate it. I am so glad Dianne and Peyton’s book was helpful. It was one of those earth moving experiences for me. Unforgettable.

    • A typical day with Marisa…lol. Ok, let’s see. On a school day, she’ll wake me up. By that, I mean she pulls off my covers, and starts yanking my legs out of bed. 😉 She might then grab her Alt Chat to tell me “I want to drink chocolate milk”, or, “I want to drink soda” (the two things she says on there most often.)

      Breakfast, medicine, brush teeth, dressed, wait for school bus. Home, snack, watch brother play Wii til dad gets home. Dinner, bath time, medicine, hang out with family time. (During which she might be happy, she might be flipping out…we never know or can predict.) Then bedtime.

      As far as what makes her “happy”, I would say being with the people she loves. Music, being outside on the swing, eating, and Ernie from Sesame Street. (She has currently taken over my Nook to watch the Do de Rubber Duck video about a million times. I sooo have that song memorized!)

      We do not have “outside” assistance other than family. On the rare occasions that I ask, her grandparents are happy to watch her. I don’t trust anyone else with her!

      I would like to read Peyton’s book. Just from the reading I’ve done here, and the few blogs I’ve checked out, it’s starting to change my perspective. I know she understands more than she lets on, and am trying to hold her accountable. Even if it’s just shaking her head yes or no! I get SO frustrated because her Alt Chat is amazing – there are so many things she could tell us on there, if she just could/would. I work with her with it every nite, showing her the tabs, and especially the keyboard. I always tell her this is YOUR voice, use it to tell us what you want! And sometimes she’ll giggle, sometimes she’ll get mad.

      The thing about her behavoir that is so frustrating is that its just so unpredictable. It’s literally like being around a time bomb. She can be perfectly fine, happy and content one minute – and angry and violent the next. 😦 You never know when it’s coming, or what what might set her off. I tell people it’s like having a newborn in a 9 year old’s body. I suffer from SEVERE generalized anxiety, as well as panic disorder. Nothing sets off my panic attacks worse than when she gets super upset and we can’t figure out why. She is on medication, and it’s still this way. 😦

      Right now, I think her problem is obvious – she is starting to get hormonal. She began developing early, and is in the midst of all the miserable stuff that puberty entails – and understands none of it. Her body doesn’t feel the same, she doesn’t understand why, and no one can explain it to her. I’d be lashing out at people, too.

      I would love to know more about you and Brett, too. What sorts of therapies is he in? What type of program is he in at school?

      • Thanks Angie! You have just described an AMAZING young girl! So happy to get to know both of you better! I will give you my home email as to not tie up too much of Ariane’s wonderful blog! 🙂 I would be happy to fill you in on our family too! Marisa and Brett sound like they have a lot in common! Especially Sesame Street and swinging on the swing! :O) My email is sbeb2000@hotmail.com You can also friend me on facebook if you are on that….it’s Becky Pease. Thanks again to Ariane for giving us this venue to reach out safely to one another without fear of judgement etc…..It just warms my heart! ((Ariane))!! 🙂

        • So glad a connection has been made and please do not worry about tying up space here. One of the wonderful things about having this blog (for me) is being able to read comments. I love all of them and am happy when people make connections. The comments section isn’t “mine” it’s for everyone!

  13. To everyone – thanks for your kind words and not condemming me! I have more to say, and will come back and post tomorrow and answer questions to everyone individually. Right now I gotta get off the computer cause hubby thinks it’s his bedtime! 😉

    Good nite and will talk to you all tomorrow!

  14. Such great comments! As a parent, I do want to comment on “HF’ “LF” .Just because someone may use that term regarding your child does not mean you have to acknowledge, listen to, or accept it. We have never used low or high to describe anything regarding H and do not allow/tolerate/ anyone else to in his or our presence. they are very relative terms..totally subjective and not useful. To some H may not be considered “hf” because he is “non-verbal” but I don’t consider anyone that would refer to him that way as “hf”. our functioning level should be based on how we treat our fellow humans. not whether someone judges anothers way of communicating or perceiving the world as correct, or less or greater than another’s. it’s not fair to anyone. How could one person know enough about another to label their functioning level? especially when we all experience the world so differently? hf and lf creates even more segregation. imagine if our world were categorized like this?

    Becky, keep talking to your son as you are one day he will be able to express how he feels. When Tracy Thresher and Larry Bissonnette were here, a grandmother at the Q & A asked about how she should talk to her (coincidentally) 8 yr old grandson. She said she often found herself speaking to him like a baby. ( i will try and find the clip, but will do my best to quote) Tracy said , If you want him to act like a baby talk to him like a baby. Talk to him like you would any other 8 year old.” Larry said ” spoil him to death like any good grandma.”

    good night all. ariane your posts are always so thought provoking,and beautifully articulated. thank you for sharing your life 🙂

    • Oh Lauri, this comment is inspiring a post I believe! I love your sharing about Larry and Tracy.

      • They are two of the most brilliant and kind people I have ever had the pleasure of calling friend. We filmed the Q & A at the Museum and Tampa Theatre but it was very impromptu and the lighting was not really adequate , but still incredible. I can send you the links, I have not really shared them with anyone other than the guys and people associated with the film. They came in June 2011, I will find link.

    • Thank you Lauri! I will do just that!!! I just purchased Mr. Bilken’s book and I am so excited to begin it!!! 🙂

      • Yay Becky! As I wrote Lauri, I am currently rereading equipped with a hi-lighter! (Which is kind of ridiculous because I am hi-lighting practically everything! Guess I’ll be reading it a third time!

  15. sorry, i left out, angie, hang in there ,you ar obviously a very loving mom who wants the best for her children. I think those books and seeing Wretches & Jabberers, Autism is a World, will be great. also read anything by Ralph ,DJ, or Emily Savarese..DJ is non-verbal, was adopted out of foster care had an extremely difficult childhood and is just started at Oberlin. Good night.

  16. The whole way functioning is used drives me nuts. They define it mainly if you can speak and they think they can measure your IQ (or if they can’t it’s at least because you are off the chart on the good end) They don’t define it in a way that directly relates specifically to autism itself. (or for other disabilities that disability for that matter)

    My ability to be verbal is a bit stress dependent even at my ripe old age. I get to witness first hand the assumptions people make about you when you can’t talk all over again. When I am less stressed and can think coherently about it the fact that a lot of very smart people I know either can’t or don’t talk (I know a few who having learned to speak still found speech too stressful and rather than be subject to the whims of if you will be able to speak or not opted to use alternative ways to communicate.)

    I cannot know what it is like from a parent point of view never being one however in my capacity as a respite caregiver I did serve in a similar capacity for up to a month at a time. I know how tiring and draining caregiving demands can be. Being tired and overwhelmed though doesn’t mean you are failing your child though. Adequate access to respite should be a basic right for a lot of reasons.

    • Gareeth, as always you bring up such great points. This idea that one can be verbal, but then during stressful situations can lose that is something that when I first heard this described I had a difficult time understanding. I have since heard this described by a great many Autistics and am beginning to understand (I think/hope) better.
      When I am given a test, I go blank. This can happen in an interview setting too, though it’s rarer. If I am on a panel of speakers and am feeling very nervous, and the moderator turns to me and asks me a question, I have on occasion gone completely blank. It’s like a light switch just turns off in my head. If I have to take a test, I almost immediately shut down. Even answers I once easily knew, I cannot summon up. Everything gets very quiet and my mind cannot concentrate on the question at hand. I begin to panic, which makes it worse. I don’t know if this is similar, but it’s the closest I’ve come to being able to fully take in what that might be like.
      These ideas of HF and LF are not applied to the neuromajority. If they were there would be such a collective indignant protest, they would be quickly abandoned.

  17. Here is a video Henry and I made last summer , it shows the magical ( I know that may sound trite, but it really was/is magical) connection he has with his mentors and friends Tracy and Larry.http://youtu.be/vb342-Q1i-M

    I am a terrible public speaker..iI was very emotional about everything..it was a dream to see this side of Henry, a side we always new was there, within our family, but to see the power of connecting with someone ( especially such wonderful , genuine, beautiful people) that could relate to him in ways and be there in ways that I can’t because I have never experienced the world as a non-speaking autistic or non-speaking. I

    I do want to clarify that the” cure” Sandra Setin speaks about is not for autism but for MELAS, Mitochondrial Encephalitic, Lactic Acidosis, Stroke Like Symptoms. Her son, Sebastien,and Henry’s best friend has it and is losing his ability to walk. He has outlived the doctor’s prognosis for him, it is very , very serious and he does need a cure or treatment in order to live.

    https://vimeo.com/27563969 Tampa Museum of Art
    https://vimeo.com/26564514 Tampa Theatre Q & A with Tracy and Larry

    • Oh the YouTube video you and Henry made is terrific! I just wish it was slowed down. I kept pausing it so that I could really look at all the great photos!! Can I post the link to this in tomorrow’s post along with the YouTube video Henry made that is on Ollibean? I’d like to write about mentorship. Would that be okay with you? I’d also love to post both the Q&A links on tomorrow’s post as well, if you’re okay with that. Also, someone just commented on today’s post that she cannot find Wretches and Jabberers with subtitles as she is hard of hearing and cannot watch it without subtitles. It must exist, though perhaps not on NetFlix, do you know anything about that?
      I also want to know – was there a screening in New York City? Do you know how to go about getting a screening here? So many should see this.

    • I had a question about the first video. Is that facillitated communication they’re using? (When a second person holds their elbow while they type?) Hasn’t that been “debunked”, so to speak?

      The reason I ask is because I saw a special the other nite on TLC’s 20/20. In it, a young adult woman using facillitated communication accused her father of sexual assault. When they tried getting her to do it alone, she couldn’t even identify letters. The father nearly went to prison.

      I am all for any method of communication my daughter chooses to use, after watching that, I’m leery!

      • I have to run, but want to address this. It’s horrible how it’s been criticized! A few unfortunate facilitators, does NOT mean they are all terrible. If you watch the movie, you will be left with no doubt, I promise you. But I will write more about this later.

      • Hi Angie, I wanted to come back to your question about FC (facilitated communication) others will know far better than I do about this topic as some use FC in order to communicate, Peyton Goddard and Amy Sequenzia being just two, but this link is a good starting point. Watch the video of Larry, Tracy, Lucy and others all of whom use FC. The link has better information than anything I could say – http://soe.syr.edu/centers_institutes/institute_communication_inclusion/default.aspx
        By the way, I will be posting about some of these things we’re discussing here on tomorrow’s post.

      • Hi Angie, yes H was using and still uses FC/ supported typing. The type of support varies with the person he is typing with. The video is from when H first started using FC to communicate “upper thinking” as he and many others call it. Henry got his first keyboard at 2 ( from our dear and still amazing speech therapist and friend Stephanie) He worked with Soma at 3, and we used to buy touchscreen overlays before the ipad . We have always used typing/pointing to support education, but did not really push typing for communication.But until we met the Green Mountain Men for W & J , we had never heard of FC. Ever. I am a researcher. I love it and the research I have seen that has been done in the last 10 years supports FC. Watch a video from the last month of H typing ..he does not have physical support , however he does need it sometimes. And would need it if he were typing in a stressful environment with me. It is a movement issue. For us that was always very easy to see, because H has had more physical issues than many autistic kids. He did not walk until he was 4 and did not eat solid food until then either, but words..though he could not say them.Words have always been his thing. Here are some great articles Sound And Fury: When Opposition To Facilitated Communication Functions As Hate Speech
        http://dsq-sds.org/article/view/1729/1777

        Does Science Support Support?
        http://www.hussmanfoundation.org/articles/Does_Science_Support_Support.pdf

        The ICI link is http://soe.syr.edu/centers_institutes/institute_communication_inclusion/Research/default.aspx also perfect.

        • Angie – I wanted to add, regarding facilitated communication, that Emma learned to both write and type by me holding her arm for support in the beginning. She now does both without assistance, but in the beginning she needed the guidance. The other thing I wanted to mention is that while Emma now is at about a 3rd grade level in reading (she is 10 yrs old) she does not write or type about her feelings. This is not unusual. Many kids who learn to read and write will not suddenly begin divulging their inner most thoughts, (this was what I’d hoped for) but it is an unrealistic expectation. I believe Emma will, in time, begin to say more through writing and typing, but for now she is very resistant. I try to encourage her, I try continuously to find things she is motivated to write about, things that are meaningful to her, but so far she remains uninterested. Do not give up hope. It’s wonderful that Marisa can type and does ask for things. Just because she doesn’t write more does not mean she can’t, won’t or even doesn’t want to.

  18. I will slow it down and send a new link..here are some better links .. Scott uploaded those to his personal vimeo and would prefer the link just go to where they are on ollibean. there was a screening in NY and Times Talks did the Q & A ..it’s amazing! I will check into subtitles that’s odd, we have on ours..there should be contact info on w & j site about screening, but will send link or email if not. It needs to be seen by everyone!
    http://ollibean.com/2011/10/01/wretches-and-jabberers-at-tampa-museum-of-art/ Video

    http://ollibean.com/2011/11/30/wretches-jabberers-tampa-screening/ screening event
    http://ollibean.com/2011/10/21/ollibean-art-for-change-wretches-jabberers-screening-and-q-a-at-tampa-theatre/ Tampa Theatre

    of course you can use anything

  19. Very moving post. I didn’t have time to read all the comments, but hope to come back. Your story reminded me very much of my father. Circumstances were very different, but he lived much longer (to be 80) than any medical reality would have predicted. He once told me he didn’t want to die because he was so curious about what would happen tomorrow. He also told me that every morning, he turned first to the obituary page to see if they spelled his name right. We are one tough breed!

  20. Pingback: Emma’s Letter | Emma's Hope Book

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