The Magic of Connection

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

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

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

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

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

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

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

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

Henri & Tracy

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

Nic & Ib on the High Line

Nic & Ib

43 responses to “The Magic of Connection

  1. You are a lovely, really kind person. I think that is beautiful. I hope for more magic too.

  2. i of course did not skip down to the last paragraph because eavesdropping remains on of my most bountiful hobbies. oh, the power of heard words. az, i am proud to join with you and other magnetic souls who are helping to change the tide so all who dare to drop their shells of separation may join in the indescribable beauty and power of connection and equality. with you, autistic brain b

  3. That high line pic shows where Nic starts teaching me how to do the *extremely* sweet FX I will debut in the Syracuse keynote. He is made of awesome just like the rest of your awesome family, which is logical. In my superdreams *all of you* can come to TASH if possible so both whole families can hang out xxxx {loudhint}

  4. LOL barb rentenbach I love your eavesdropping hobby, I think I have the same. Can’t resist info.

  5. I read the whole thing because I trust you not to be intentionally hurtful or malicious. Talking about painful subjects like this is so necessary. I think people often mistakenly believe that everyone is either solidly on the cure side or the acceptance side (to greatly oversimplify) and there’s no movement between the two and no one can ever be educated or persuaded. But here you are, giving us concrete evidence that people do learn and change. It’s courageous of you to revisit those early years and talk about them so honestly and to own all of your journey. It reminds me how important it is for us to listen to each other and embrace each other in whatever place we’re in right now.

    • Thanks for such a terrific comment! “It reminds me how important it is for us to listen to each other and embrace each other in whatever place we’re in right now.” Yup. This is sometimes difficult, but I am always glad when I am able to, if not embrace, then at least appreciate, other people’s journey.

  6. I too am a mother who has gone above and beyond doing therapies and DAN. My son was in a shell, in a cloud, he didn’t like it in there, he was hurting with sensory overload, he would rock and moan trying to regulate his body, this is not a pleasant life to have . WE HELPED HIM. No one can remove autism, but lower the unpleasant symptoms is the point, removing toxic overload, giving the body what it needs to function at it’s highest level – just like someone who needs extra vitamin B or D to feel better. Autism is a condition, a condition doesn’t define a person – this is the mistake people develop – It’s not “he’s autistic” that way of thinking is not how I believe the general public views individuals who have a condition. My son, he’s smart, he’s funny, he’s very social, he loves music, he hates riding bike because it’s hard for him to peddle, he also has autism, but this doesn’t define him and as a parent, i have helped him with his unpleasant symptoms 1. constipation, 2. sensory overload, 3. lack of being able to communicate, 4. reducing frustration and teaching through teh amazing ABA therapy “NOT how NOT to appear autistic” But, helping him understand when someone is sad,what that means to how to understand the world around him, He will grow up and maybe have a family some day, maybe have a job. those things are not determined in anyone autistic or not. it’s just life. I think that the way you worded it sounds like you did wrong doing the therapies…but maybe it was your mindset in why you wanted to do the therapies rather then the therapies themselves. the therapies help people, that is never a bad thing.

    • Christina, I appreciate your reaching out.
      You see there was a time when I would have wanted to know exactly what you’d done, exactly what had helped your son and then I would have done all those things too. This pursuit was what hurt me and my family. I used to use similar words as you have – “in a shell, in a cloud…” and I then made assumptions about my child’s distress as a result of what I perceived to be her ideas about her life or as I used to say, “her own little world”. But what is interesting about all of this, is that those were not her words used to describe her life, they were mine. But I believed I was right and so asking her how she’d describe her life did not occur to me. As it turns out my daughter has a great deal to say and tell me. She doesn’t use verbal language to do so, instead she types or points to letters on a letter board. The minute we de-emphasized the importance of verbal language, the more “conversations” we have been able to have!

      I think we can both agree that accepting, embracing and loving our children does not mean we sit back and do nothing to help them. However racing after the latest miracle treatment is not something I engage in and my child and family are grateful for that!

      Happy Mother’s Day!

  7. You are amazing. When I reread the interview with Tonya, whom you met when you were here:), I used the same word “magical” to describe what it was like for us to be with their family. The feeling of acceptance, belonging, and that beautiful connection you describe. Your words say it all “What people do not understand fully, or cannot completely appreciate, is this – when we stop dividing people into categories of us and them – we open ourselves up to the experience of being united, of really feeling that indescribable magic of connection. The beauty of belonging. The joy of interacting with our fellow human beings and rejoicing in our diversity. There IS magic in that. This is what I wish all human beings have the opportunity to experience. This is what I hope I will live long enough to see occur on a grand scale.” Thank you dear friend for being you.

  8. Carol Lawhorne

    Sweetheart, you have hit yourself and beat yourself up for the very reason that makes you what you are…one of the wonderful moms WHO CARE….do you know that MOST of us would do anything, and possible have done many things right and a few wrong…but, at least WE TRIED…we have been there to give them hope, love, understanding…and no ONE else could have been that special one to them that we have been….ALL of us are to be commended for staying and loving and communicating…encouraging them and each other in all we do….WE are the new world…the world that is HERE now…and we are and have been equiped by God for each of our children…NO MATTER WHAT….Have a Blessed Mother’s Day, and take time to forgive yourself (ourselves) for not being perfect…WE were picked to be their parents…God does NOT make mistakes….love to all of us….

  9. To Christina: The therapies, especially ABA, can be, and are a bad thing. They reinforce the “you are broken and need to be fixed” idea that is very painful, both to children and adults. They can cause damage to self-confidence and can be physically damaging through increasing stress and anxiety. They do hurt people.

    I will not debate semantics about condition versus identity; others have discussed that over and over, and if you believe as you do, then there is little I can say. But please don’t make judgments about Ariane’s “mindset.” She is being honest. Consider your own mindset and why it bothers you so much when autistic people identify as such.

    Perspective matters. Judging a child as not understanding others’ emotions because he/she doesn’t react in an “expected” way disrespects that person. Training children to behave in “expected” ways is harmful. It would be a wiser choice to try to understand the communication of the child/person, and learn his/her strengths, to move beyond “they have a condition” to accepting that person as a complete human being.

    Our society has a long way to go. We as individuals have a long way to go.

    To Ariane: Thank you for all that you are doing in the struggle for acceptance and understanding. Thank you for your honesty and your courage to do what is so difficult for many: to look at yourself and your own motives and decide to do something when you feel you were wrong. Thanks for sharing with us. It matters–a lot!

  10. When you know better you do better and you Ariane are doing better every day please stop beating yourself up over past mistakes. You’re so right when we stop labeling people we will realize we are all just human beings.

  11. This whole discussion is fascinating to me as Emma and I discussed something I assumed I had understood since she began”talking with her hand” as we call it. She loves the mall. She says she loves the atmosphere there. She says people are more interested in themselves rather than her so she doesn’t feel so self- conscious. I had assumes she meant self conscious of when she might flap or jump or something physical that might draw attention. All this time she had been referring to “not being able to speak” like me.
    Frankly I am still processing this. Why? Because it goes directly to the issue of whose autism is it anyway and…what does it say about my own issues as a mother with this amazing young woman I am privileged to be learning some life lessons from.
    Happy Mother’s Day Ariane.

  12. Jessica Berckes

    Oh honey, please stop beating yourself up. You have done what everyone wishes they do in their life. You have grown, evolved, learned from your choices, become a better person, and are helping others become better people too. Everyone hopes that they can do this in their lives, not all do. Had you not gone on this journey – you would not be leading so many others now. You may wish you could change the past – but if you did there would be many people that you have guided that today would still be lost.

    You are our guide – help us into the future – and do not dwell in the past.

    • Jessica your comment reminded me of friendship and leaning on others and how we help each other and urge each other on. Thank you for all these lovely words of encouragement! Please know they are greatly appreciated. Onwards!!!

    • This was a tidbit I’m truly grateful for having read, thanks Jessica!

  13. Would you recommend any therapies or treatments? I am not trying to cure my son, I think he’s a pretty cool kid 🙂 but I do feel like he needs a little extra help in learning skills that will help him in living his life. He is currently in lots of therapy. ABA, OT, Speech, PT and he also takes piano lessons, he loves music.

    • Hi Kari, I cannot tell you what your son might respond to, but I can tell you that our daughter has done very well with Soma Mukhopadhyay’s RPM and is doing beautifully with supported typing which we are sure we will, in time, be able to completely fade. During those early years there was a huge emphasis on ABA, OT and speech. I cannot say speech helped much at all – she had upwards of 5 hours a week for many, many years and ABA was a disaster, she actually began to regress. When we stopped worrying about her verbal language, and began concentrating on having her communicate through typing, thereby de-emphasizing verbal communication she actually began to speak more. I would absolutely begin to teach spelling and typing as so many, even those who have verbal language often find their speech is unreliable when stressed or in emotionally heightened situations. Pointing at a letter board can be a good starting point.

      • Cool. Thanks for the suggestions. I know that not everyone on the spectrum is the same but many characteristics are so I feel it’s helpful to ask, ask and ask some more! We did try the gluten casein free diet awhile back but not because I was looking for a “cure” but because my son was throwing up all the time and no one could figure out why. But it didn’t do anything positive so I do regret that decision. I am always trying to research and find what has helped others but unfortunately there are so many quacks out there it is hard to wade through it all to find good advice. We are currently trying to use the IPAD as our AAC device but he is using it more for learning games and entertainment which is great. I swear he is teaching himself to read and he has taught himself the ABC’s on it. He amazes me! We also use a communication binder kind of a PECS system but not entirely, it’s kind of something I made up so he can choose his favorite things to eat and do. He is 5. We are now trying to decide what is the best thing for him to do next year for kindergarten. I don’t have a whole lot of faith in our public school system and I work in it. And what to do with therapies, we are making our pros and cons list. He loves his OT therapist and I feel like he makes progress but I’ve been questioning some of the other therapies. I feel like your blog is helping me to be brave in knowing that I do know kind of what I’m doing. LOL Thank you for you honestly in your blogs. It’s nice to here other people make mistakes just like I do. Anyway, that was a long winded thank you!

  14. I for one really appreciate that you do sometimes talk about the things you regret. It helps me, and others I’m sure, to learn and to feel reassured a bit about our own stuff ups. You speak about it in such a beautiful way, too, even though it must be hard for you to do. Love this post. Will be sharing.

  15. If you had not begun your journey with a desperate search for a cure, then where you are now would not be as meaningful to you or your family. You are a better advocate because you experienced the grief, fear, anger and desperation. It is why your writing is so touching and insightful. You give hope to the parents who don’t want to believe that their child is broken – because deep down they know he or she is not. They need to hear it from someone who’s made the journey from devastation to unconditional love and acceptance. Much love to you and yours always. ❤

    • Renee ❤ This is such a nice and very supportive comment. I do hope that as this was our experience, I may as well use it to do some good, or so I hope. As you've said, without having gone to such extremes, as we did go to such great lengths, there is little anyone can tell me they've done that we didn't also try or seriously consider. To come out the other side of all of that, to literally see that there is another way to think about all of this… that has been such a freeing, liberating feeling. As a family we now laugh and feel joy, each family member is respected equally, each member is given a say in what happens. All decisions are talked about and discussed, none are excluded. Inclusion is something that gets talked about a great deal, but inclusion begins in the home. It begins with the family coming together and making the decision that everyone has a voice. Em's voice isn't always verbalized, often her words are typed and then read, but it is as valid as anyone else's. Everyone is heard. But years ago, this was not the case. This was not what we did. Years ago none of these things were things we understood or knew. Years ago we were drowning in a sea of fear.

      And people… Autistic people threw us a life vest…

      • Above all, it’s your story that keeps me hopeful in reaching out to parents who are going through the same thing. It reminds me to be compassionate, even with people whose compass points a different way than mine. Maybe my reaching out can help them recalibrate. My silence or anger definitely won’t. That doesn’t mean I won’t be angry when I need to be, but I always keep in mind that your story shows that people can and will change if given the helping hand they so desperately need.

        • You are helping so many. Look at all these comments coming in, in response to your words in the last few days. Really. I asked a couple of questions that you then answered and wow! Just wow! What an amazing discussion.

  16. Hey Ib…. I love you. Just sayin’…

    • Coinky Dink of the Highest Order! I love you too! 😀

      • Periodically I think about putting a real pic of myself on here since there is one everywhere else, but it is so hard to give up this fantasy of myself with a boioioing spring for feet. I would just so love that, and I don’t know how the algorithms knew to make my avatar look so much like my self-image. Boioioing!

  17. Whether autism is something that can be treated or not, I think all loving parents are trying to find the best sources for their children. When I worked in early child autism, most parents were either trying everything, even things they thought absurd, or they were still coping with believing their child’s diagnosis. It was true, very few, if any, could actually accept the diagnosis without actively pursuing a “cure.” Not being a parent, I have a perspective that is surely easier to deal with, and so I loved each child as the unique and beautiful individual that they were. In the classroom, we weren’t so much trying to change the children, or negate how they were, but we were tying to modify and redirect certain behaviors, (never using aversive methods, ever) as any teacher in any classroom of three year olds will do. I don’t think your looking for “treatment” for your child, is any different than what a parent of a “typical” child does when trying to make that child’s life as fulfilled as possible. And yes, it was not only an education for the children, but for the people around them. I got into many arguments, and was at times downright appalled by the behavior, attitudes, and perceptions of adults and teachers around the children, but then, those people acted the way they did around typically abled children too. That is why I always liked the Teacch program out of NC, because they created a way for children with autism to live fully, as they were. They saw the population of people with autism as their own unique culture, so to speak, and the programs they developed were to facilitate a way to live with autism, and educate people with autism, rather than trying to make the autism go away.

  18. Okay, so I just had to do something I’ve never had to do in the THREE years of having this blog…. I just deleted about twenty comments. This blog is a place for people to come and discuss.

    This post was about how PAINFUL it is to hear talk about “cures” not just for me, but for those people (many of whom I have come to know and love) who have had to hear such talk far too often. The conversation that then ensued, because someone saw no problem in going on about the various “cures” they were pursuing, despite the fact that I wrote repeatedly how hurtful such talk is, despite the many comments from others who were clearly distressed by this person’s words, was upsetting to too many. So. the original comment and all related comments have been removed and I apologize to those who were upset.

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