I Will Not Model Compliance For My Child

“Look! Motorcycle bubbles!”  This was a phrase Emma used to say often.  It was an all-encompassing phrase that was both a metaphor for rain and the Fourth of July and New Years Eve fireworks, as well as a descriptive phrase of what both are like sensorily for her. (Emma has verified this is true.)  “Motorcycle bubbles” meant rain and fireworks, but there was so much more to those two words than simply pointing out the window and saying, “Look!  It’s raining!”  or “Look at the fireworks!”

When I went back through this blog to find the post I’d written about motorcycle bubbles, I found these, “Sorry Bubbles” and Em & The 4-Wheeler  written more than two years ago, that I’d completely forgotten about.  “Motorcycle bubbles” and her related phrase, “Sorry bubbles” are nothing short of poetic.  Poetry is all about using words in unusual, unexpected ways, “Sorry bubbles”  Great art evokes an emotional response within us.  While, a few years ago, I was appreciative of the beauty of phrases such as “sorry bubbles”, I was even aware of the emotional tug I felt when I heard her say those words, that appreciation was tempered by worry and concern about what I believed the larger issues were for my child who said such fascinating, yet cryptic, words.

I no longer feel the strain of worry and concern, but rather delight in my daughter’s obvious brilliance and poetic gifts.   I am grateful to have gotten to this place of appreciation and joy.  So many autism specialists and so-called treatments did not and do not appreciate the beauty of those word combinations.  So many believed they were aberrant, meaningless words that must be righted through rote learning and repetition of more “appropriate” words.  Which was code for “use these conventional words, so that we can understand you more easily.   Make our lives easier.  Behave in ways that do not draw attention to you.  Be like everyone else.”  And all of this was done under the guise of “helping”.  Meanwhile “motorcycle bubbles” and the like would be bulldozed, covered with the dirt of more conventional language.

People argue that our children need to learn to “fit in” that it is our job to teach them these skills and to not do so is to be negligent or (at the very least) unrealistic about life and the world.  But for those like my daughter, asking her to spend so much of her energy and time to try to change the way she moves (were that even in the realm of possibilities), forcing her to give up her string (which marks her as different), trying to get her to substitute her string for a more “socially acceptable” object, teaching her to swallow her verbal utterances that to others seem nonsensical, forcing her, every time she said anything, to repeat a more conventional way of speaking, even if all of this were remotely possible, I ask WHY?

Why would we do this?  Why is all of that more important than giving her the freedom, support and encouragement to be her unique and beautiful self?  Why is quelling her natural tendencies so desirable?  Why is tamping down her poetic phrases, replacing them with more standard, “accepted” speech preferable?  Why is all of this considered desirable given the massive toll all of that takes on her?  Even if she could do any of these things, even if all of it were obtainable goals, how exhausting, how bone-numbingly frightening, how terrifyingly isolating it would be to grow up believing that everything about you was fundamentally wrong.

I’m not interested in grooming my child to be something she is not, demanding that she be someone, that even if it were possible for her to attempt, would make her feel awful about herself, just so society could feel better about its own mediocrity.  I’m not willing to do that.  The only thing I care about, the only thing I’m interested in, is changing society’s views and the only way that’s going to happen is by countering what is considered the “norm” and saying, NO!  I’m not going along with it.  NO!  I am not going to raise my child to be compliant or train her to say what you want to hear or try to force her to move in ways that society has deemed acceptable.  I will not model compliance for my child to imitate.  I do not condone censorship that would bury “motorcycle bubbles” and “sorry bubbles” forever.

(Chou Chou – This photo’s for you!)
Love copy

47 responses to “I Will Not Model Compliance For My Child

  1. She. Is. So. Beautiful. And I love the phrase “sorry bubbles”.

  2. Love this! I just wrote a post on facebook yesterday about how I refused to force my daughter to conform. I didn’t raise my other children to conform so why should I raise her differently?

  3. ooOOOooooOoOooooooOooooooooOOOOOoooo bubbling with love oOOOoOOOoOooo

  4. Just the word ‘compliance’ makes me twitch. I was going to link to a blog post to highlight the risks of teaching compliance – but I see that you were the first commenter on it! However, I’ll link it for others who might find it valuable: http://unstrangemind.wordpress.com/2013/01/27/no-you-dont/ (trigger warning – abuse.)

  5. My husband is also an Aspie and definitely does not believe in conforming. Luckily, he grew up with parents who allowed him to be himself, and he is incredibly happy. I grew up with a family who kept reminding me to “fit in” and I am struggling to undo all the harm to my self-esteem.
    My husband is a computer programmer. He recently had to go to the main office in San Francisco. The last day of his trip, he decided to wear a baby blue t-shirt, camo shorts, a bow tie, a bolo tie, and a regular tie (which was on backwards). He was just being goofy. Luckily, he has a great boss and team. His boss’s response to seeing him like that was “I knew you were going to add color to the team when I hired you.” He has only been at the job for a few months, and they already accept him for the quirky person that he is.
    For years, my husband doing things like this drove me nuts, because I was taught to conform and my husband wasn’t conforming. But, now, I am realizing just how happy he is and how miserable I am. Realizing that all three of us are on the spectrum, and learning from other autistic adults has made me change not only how I parent my son, but how I think about my husband and myself.
    I am now more concerned about raising a child who cares about how he sees himself rather than how the world sees him. He can choose to fit in or not when he gets older. I even pulled him out of public school because I kept hearing from the SLP, OT, principal, etc. how important it was that he not seem “different”. Middle school is hard enough with peer pressure to fit in. I didn’t want him in an environment where the adults were all focused on making all the kids “indistinguishable from their peers.”

  6. ❤ this. Everything you said is exactly how I feel about my daughter too. I will not change who she is so everyone else feels more comfortable. Exactly. Now, respectfully, as it is on my mind and if I don't ask here, I'm not sure where I would- Sophie is an "easy" child. She isn't aggressive, or loud and transitions easy. As a result, she is accepted everywhere as herself, because "herself" is a quirky, but sweet self. Now I wonder about parents whose kids are more tormented. I'm curious if you ever thought about addressing that in your thoughtful way? What if your child is not "easy" to accept (I mean it in a conventional way, not as a parent of course). I don't mean to steer this off course I just value your opinion and I'm still learning!

    • (totally went overboard here in response to you… feel free to ignore!)

      People say, oh but our children need to learn that the world won’t accommodate them and to that I say, they don’t need me adding to that! They’re going to figure that one out really quickly. What I can do, what I want to do as a parent is provide both my kids a safe haven from this world. I can and do say things like – we mustn’t interrupt another person when they’re speaking. Or, here are the chores around the house that need to get done, which one do you want to do? And then show them and help with whatever they choose until they’re able to do it on their own. But I won’t teach either of my children to walk differently, or to change the way they speak, or make them feel badly for not speaking, or criticize them for their interests, or tell them what to say or that the feelings they express are wrong and need to be changed.

      If my child is “acting out” doing things at school that they consider “challenging” I go to the school to figure out what’s going on. I do not assume the school is right, my child’s behavior has no bearing on anything and is just behaving badly for the fun of it. Sometimes I can figure out what’s going on and sometimes I can’t. But I will never just accept that because an adult is saying my child is doing x, y or z then it must be so.
      Awhile ago we were told that my child was spitting at both the bus matron and another kid. Through typing my child was able to tell me that the kid was teasing them, running his nails along the back of the seat where they were sitting. They told the boy “stop” but he kept doing it. They yelled at him to STOP! But again, he wouldn’t. Finally my child started crying, biting themselves and then finally spit on the boy and that’s when the matron came over, admonished my child, but said nothing to the boy who was teasing. My child was understandably very upset. I asked that the boy be seated away from my child and it never happened again.

      I think we have to rethink what “society” wants and asks of all of us and to not be afraid to say, No. I disagree with this. Compliance may give the illusion that things are moving along faster and more smoothly, but it is almost always an illusion at best.

      • Thank you. I guess upon further reflection my question stems from my own insecurity. I’m worried that I, who has this “easy” child have no right to tell other people how to raise their more challenging ones. I always feel the need to add qualifying statements such as “but I don’t have to deal with meltdowns”, or “but she’s so easygoing so it’s easy for me”. No good being an apologetic advocate, is there. As far as compliance goes, I totally agree. I hate that word and don’t raise any of my children to be “compliant”. Respectful yes, kind yes. But not compliant. We are all weird in this house too so that is not even an issue 🙂 I guess my mind bounced off on a tangent.

        • Ah… well you know I don’t feel comfortable ever giving advice to anyone. (I’m really hoping a whole lot of people aren’t laughing right now as they read this!) I try hard to talk about my experience with whatever it is, but to write a post directed at others telling them how they should raise their children? No that is NOT something I am interested in doing. And when I’ve veered into that territory, when I’ve gotten up on a soap box, I’m usually reminded pretty quickly just how slippery things can get up there. I’ve made way too many really terrible mistakes to sit in judgment. Yes, I have strong opinions, yes there are times when I REALLY wish everyone would agree with me, but I also can laugh at that desire too.

        • Oh so now you’ve gotten me thinking! And you know that’s the thing about all of this that I really love… I write something, people read and then comment adding their points of view and thoughts. Sometimes they totally disagree with me, sometimes I read their comments and think, wow, good point, I hadn’t thought about that, or what an interesting way of looking at things or whatever. And sometimes people come here and it’s clear the divide is too big for either of us to cross. I imagine they go and find places better suited to where they are and what they need and I continue on my way, but the thing I love, really, really love about blogging is the back and forth, the opportunity for discussion. Where else can I write about whatever I feel like and have people comment with their own experiences that often serve to widen and broaden my thinking? It’s fantastic!

          I’ve written posts that have engaged a huge number of people who then wrote far more interesting comments than my original post! I’ve written stuff and had people come and write things that completely changed my views. I’ve written stuff that I regarded later as completely inaccurate and some posts I’ve had to delete because they no longer reflect what I believe or they were written without my daughter’s permission or were too personal. I’ve had people write things and send me links that have changed my life. Because of a follower who sent me the link to Julia Bascom’s blog, my entire thinking was transformed, from one link! I love that.

          There are very few topics where I feel I am in any position to tell others what they should or should not do. I mean there are a couple of things like, don’t kill your children, that seem obvious and clear cut, or times when I’ve written about something we did that we later came to deeply regret, and I always hope people will maybe avoid making, at least a few of the mistakes we’ve made, but I don’t know that people come here thinking they’re going to get advice as much as they come here curious to read about one family’s experience and talk about their own.

          I don’t know. Maybe people see what I’m writing and come away feeling I am judging them or telling them what to do, but most of the time (I think) people come here and talk about what they’re up to or how they do or don’t relate to what I’ve written. There have been times people have written something and I’ve definitely thought – Oh no! I hope they stop doing that! – but telling them that never helps, if anything it pisses people off. I find being compassionate and kind is a far better way to communicate differences of opinions, it’s the only way I’ve been able to change my views. I don’t respond well to people yelling at me, I don’t think I’m unusual in that regard. If someone writes of their personal experience about something, I don’t take that as them “giving me advice”. I might learn from their experience, but I don’t think of that as “advice giving”.

          Does any of this even make sense? Whew! Your comment made me think about a great many things!

  7. I’ve always admired non-comformity. Most so-called conservatives embrace conformity. The mob mentality of us vs. them. Ever notice that wars aren’t instigated by offbeat weirdos? Wars, lynchings, genocide, institutionalized oppression of women, racial and ethnic minorities, gays and people with “alternative neurologies” — all of this comes from the same place– the fear and hatred of all things “other” and blind obedience to the rules of conformity as dictated by the in-group. Race, gender, ethnicity, language, behaviors, sexual preference are all evaluated as “membership qualifications.”

    I like weird. I like strange, unusual, different, interesting. I like creative people and creative thinkers: artists, writers, poets, scientists, philosophers, activists, dancers, musicians, comedians, performers.

    “Out there” is a compliment for me.

    When Emma said recently that she wanted to “fit in” it raised a lot of questions for me that I hope she’ll be able to answer: What does it mean to “fit in”? What kind of people do you want to “fit in” with? What do you think you’ll gain by “fitting in”? How can we help you? Do you want to learn social cues? The behavioral and cultural rules of a society that have been created and adopted by people you might not really want to be friends with and can’t be so easily trusted?

    I do want to help her so much. I want her to have friends and intimate relationships. I don’t want her to get laughed at or bullied. I also want her to understand that the best friends, lovers and acquaintances a person can “socialize” with are the ones who love you exactly as you are. Now. Today. With your string and gallops and funny faces and “Wooooo!” shouts in glass elevators.

    All my best friends are non-conformists. These are my people. My guess is that they are Emma’s people too.

    As Groucho said best:
    “I refuse to join any club that would have me as a member.”

  8. I love the poetic terseness and depth of the phrases “motorcycle bubbles” and “sorry bubbles”: they are such evocative, visual fragments. I got the meaning of “motorcycle bubbles” almost immediately: the associations work in my mind too, and conjure up what must be similar feelings of sharp, sudden, acid fear — the “bang” — alongside the blissful, wondrous joy of the drifting, shifting patterns of bright colors and shapes. I truly hope Emma never loses her gift for unconventional language. To convey so much from just two words is beyond the grasp of all but a few people.

  9. I love this! My little guy Max is quite verbal, but often uses his own unique vocabulary, such as saying “yesterday” for meaning “anytime in the past”. He also refers to me as “that mysterious old woman” if I put my hair up, which is his way of letting me know he’d appreciate me NOT wearing a ponytail (I think it may be because he finds the change in how I look confusing). I find his usage of words so uniquely Max that I can’t imagine him speaking any other way!

    • I laughed out loud when I read, “that mysterious old woman” and I was on the subway… actually woke the woman seated next to me up… so… yeah.

      Em says “yesterday” too for anytime in the past that isn’t today. Love that.

  10. Pingback: “Why is all of that more important than giving her the freedom, support and encouragement to be her…” | tumblr backups

  11. thank you so much for writing this this week, I tear up responding to this because it has been a hard week of dealing with the world and their ignorance and want to conform all beings into their way of being. This gives me strength! ❤

  12. Love this post. I think the main thing in having a communication is to keep the communication going, not interrupt it without trying to understand, especially when we communicate with a child who struggles to express himself/herself to start with. I never understood why some therapists and professionals at the beginning of our journey ignored that obvious fact and wasted time and energy and what’s worse were detrimental by ignoring and not hearing the communication my boy already had. We were lucky that floortime DIR was already accepted and I found therapists whose way of teaching made sense. I so agree with you when it comes to compliance. Every child and young person struggles to ‘find’ themselves and their place in the world as it is. Peer pressure can be a big problem when a person doesn’t have any self confidence… I think we have to help our kids (autistic or not) understand themselves better and develop integrity and own opinions, not confuse them.

  13. Lana – yes, as I wrote this post, I thought a great deal about my non autistic child too. I want both my children to feel supported and encouraged to be all they can be given their innate talents and interests. And I’m with you, I don’t want either of my children to think being compliant is a goal.

  14. This post is truly wonderful. Truly. I am beside myself with joy and hope for what you have written and for the change that I hope we can all make in the system that is so incredibly restricting and disrespectful.
    No parent should be modeling compliance for their child! So-called “typical” kids are allowed so much leeway, so much room to be themselves in many ways, and so many kids with special needs, especially Autism, are not.

    In the setting I work in, compliance is valued above all, and kids aren’t supposed to be “non-compliant” or do anything remotely individualized…if they are Autistic. The kids that are not “get away” with a bit more, being told they are “not listening” or “being silly.” But the kids with Autism are told to stop the “ugly behavior” and to “sit still.” Even just the simple act of a child with Autism knocking over the block tower of his NT peer is met with “stop ruining her tower!” because clearly it is inappropriate for one child to knock down another child’s block tower?! It is so frustrating to witness such things, and so terribly unfair.
    In my small corner of the world, I don’t ask for “compliance” in my sessions. No-one has to sit, no-one has to have “quiet hands and a quiet mouth” and everyone, and I mean everyone, is supported for their individual abilities, creativeness, and uniqueness.
    I am lucky to have the flexibility to provide therapy in the way I see fit, and I am lucky that DIR is somewhat accepted in the setting I am in. But most in the setting are NOT on the same page.
    Many have told me that I’m essentially beating my head against the wall if I expect what I’m doing to make a difference, and if I expect the system to change. I don’t expect the system to change. I expect that we will all have to work to MAKE it change! If we don’t each take a step in the right direction, and change what we can, how will anything ever get done?? There is too much advocacy for “awareness” and nowhere near enough advocacy for real acceptance, respect, and support. I suppose all the latter take too much time? Effort? Still figuring that out…

    Apologies for the tangent…I am especially passionate about this topic, and while all your posts are wonderful, this one hit me in a way that no other has. Thank you.

  15. Bubbly, beautiful, joyful, HEARTS!!! And Emma, the ruler of that land! Thank you for thinking of me! I am busy with sparkly bubbles of my own, to give away at lovely shows, so I must not be tempted to linger here. I am sending many beautiful hearts.
    Such a touching post and beautiful comments! I thrive and contribute best when I can be who I am, and I think we all do. I do not quite get that my way might be wrong, and, like Em, I want to fit in, but be me. I don’t think we ever find the perfect balance in that, but fortunate, indeed, are those who are loved and accepted for who they really are!
    I have a trick that I figured out long ago. Fitting in and having friends does not come from being like others. It come from loving others. If I try to impress or fit in, even on stage, I am a hopeless failure. Instead of thinking of what I should do, I focus on how charming and strangely wonderful each person is, even those I do not understand, even those who do things or have opinions I do not care for. That makes me want to give a gift to them, and the very best gift any of us has to give is the unique magic of who we really are. So I give myself, my bubbles, my song…and it fits in just right!
    Em is growing, and will cry the same tears all girls do, full of sad confusion and yearnings. She will survive, and so will you, and the world awaits for her to give the unique magic only she can give. The gift of Em ❤
    Bubbly joy to all of you! XO!

    • I know how busy you are, Chou Chou, so am feeling particularly honored that you’ve stopped by to comment at all!
      In other related news, Em is taking piano lessons AND guitar lessons. More on that and in private later. Sending you bubbly love!

  16. MOTORCYCLE BUBBLES!!!! I can actually see the picture that goes along with that… especially in relation to fireworks.

  17. Why indeed. None of us should be forced to conform to the norm.

    • I have to find this TED talk given by a British gentleman who was knighted. He talks about the education system and how we are squashing our children’s creativity. It’s wonderful… if anyone reading this knows what I’m talking about, send the link!

  18. Hi again(2nd post ever) Please delete this if it is too long or not appropriate here. I am not an avid poster, I usually just read, read, and read some more, but you guys seem so real and think more like me than most. I had to comment especially after reading Melanie’s post about her approach vs. her peers approach to working with students. When I posted previously about my daughter’s GI problems and b/c she is non-verbal it is hard to get dr. Support for my observations of her, I mentioned I was a recently retired educator. I suppose I felt misunderstood b/c of my experiences with my daughter I tried to look at every child I taught to see what they liked, didn’t like and why, home life, etc… I taught general education (20yrs) in an elite public school and b/c I would have the patience and acceptance to take all the children that no other teacher wanted b/c they did not fit into sit down, be quiet, turn to pg.25 and answer questions 1-20. I actually had parents have their child removed from my classroom b/c they would explain it was nothing about the teacher but she doesn’t have the right caliber students in her room. So it went other teachers would get the cliques designed by parents and I would take ESOL and all others that parents weren’t manipulating the system. This eventually led me to pursue teaching special education but with the inclusion model if I was kind and tried to understand the individual child, I was accused of babying the students. I was perceived in an unfair light in my opinion b/c I as a teacher was not making my students conform to undue stress when I knew the requests to do so were more detrimental than not. Why not record the answers for a student if the anxiety to write and keep up is too much. Why not allow typing instead of writing, why not allow the student to learn in a way that helps them, whether it be giving them typed notes are letting them write on a white board instead of paper, why not give them pretzels in math class if it was late afternoon and they were too embarrassed to eat lunch in the cafeteria. No they could not seat in a quieter environment to eat because this would be enabling and not the real world. I did not understand why one would not want to help resource students be successful ( my daughter is self contained and cannot write at all). But they did not fit the mold for a typical classroom or school and changing teacher mentallity for acceptance if it did not affect them personally was harder than pulling teeth that aren’t loose. It is harder and takes more work to care for each students differences, but team work is part of the answer, but I didn’t find that before I retired, so now I am just enjoying taking care of my daughter and reading as much as I can to learn new ways to help her and others. I know early intervention is key, but at 20yrs. Old, my daughter continues to learn and do new things(slowly but surely). By now, most therapists have dropped her b/c after this age what do I expect them to be able to do for her, plus she is nonverbal and likes to stay in constant motion which Isn’t allowed at school or certain therapies, so I suppose she is considered high maintenance. I do Not want anyone to work with my daughter that feels inconvenienced by her or doesn’t believe in her. Brooke’s Mom

    • Diane – I love that you’ve written this comment, all of it, every single word! Thank you for leaving it here for me and others to read. I would LOVE to have had you teach my daughter! I think what you’ve described is invaluable. We had an amazing teacher last year. She was incredible and very much had your philosophy and approach. I actually wrote a whole post dedicated to her. She was a teacher I really, really wished I could clone.
      As I read about your daughter, I just want to throw out a thought. Do you know of Halo and Soma Mukhopadhyay? Her center is in Austin, Texas, but I know at least one school district in Wisconsin is now using the method she developed with good results. http://www.halo-soma.org/main.php?sess_id=123f001ea91b3d4ce8ba3202350a4217

      Soma’s son Tito is non speaking and has gone on to write at least four books. My daughter is now working with Soma and I am learning to use her method at home. Anyway, just a thought, toss it out at will.

      • Thank you for the kind words. I often felt so unappreciated and actually it was to the point of bullying, but that is neither here nor there. The students loved me, we shared a mutual respect for each other and they thrived. That is what kept me going. I slept at night ( not really, my house is like the motel 6 – the light is always on) but in my heart I knew my kindness and compassion were helping not hurting. I may have not been the best teacher but I tried very hard.
        In regards to Soma and Tito, I recorded their appearance when it hit national news several years ago and sent it to the school superintendent, special ed director etc… So they may never know that even though it wasn’t her technique at the time that was helpful, but to show that my non verbal autistic daughter had so much more potential than they were giving her credit for or even offering to provide. Through this tape of Tito my husband was able to fight for my daughter. The outcome was a class upgrade, a full time aide, and a message that we wanted and expected the best possible services for our child. Today unfortunately, the turn over of aides, teachers and philosophies/personalities has left us feeling that we don’t have much more than a babysitting service and not always competent even at that. I am always thankful and optimistic though as long as the teacher is doing the best she can with the situation she/he is given. I do not and will not allow anyone to be around my daughter that doesn’t want to work with her even though it is their given job. I love out of the box thinkers and problem solvers. The ones that say “my way(compliance) or the highway”, I choose the latter that is another reason we were able to change services because as my husband told the district, where our child was concerned, we would not go quietly into the night.” He wanted them to research Soma’s method immediately, but unfortunately it has taken years for her to get her book published since then. I actually ordered it from Amazon the week before your blog post about your trip. I was jealous of your journey( not really jealous-I have come to the conclusion that I don’t posess this trait for which i am truly thankful), in awe of your travels to pursue and share this experience. The picture of Emma with the letter board easel and pointer was very enlightening to me. One wonderful private speech therapist informed us that Brooke could read when she was 8yrs. Old. She used fc with Brooke which transferred to about 5 people, but it was so difficult for Brooke to be still and the teachers were not believer’s and Brooke knew it. Unfortunately they shut her down. They admitted she could spell her name but they attempted to get 70% mastery to the point of trying to get her to do it about 20 times a day. My husband went balistic, but they informed us if she couldn’t consistently perform it was of no use. Brooke can sing and became echolalic at puberty. She loves the human voice so i get the honors of reading, singing nonstop, but it makes her happy so… She has apraxia so the words she does say are garbled like gaggy for daddy and uv for love but hey I’ll take whatever she is able to provide. She can recite poetry, but she prefers if she says the word, I finish it or I will repeat songs or stories and let her fill in pauses I create for her to say the word. This has actually transfered to some appropriate language never on command but spontaneously once in a while. I think Brooke would be an excellent student for Soma’s method, but I live in Georgia(not even rural) and they have come a long ways since her birth but they are still very behind the times ad far as I can tell in providing appropriate services. I am sorry this is so long. Brooke has actually been labeled an enigma and 20 yrs. Of her experiences are hard for me to relay in a short and sweet manner. This was just a brief glance. Now you know why I have never posted-tmi. 🙂

        • Nope, not TMI at all. in fact I really love hearing all about your daughter. Incredible that you knew about Soma and tried to do her method. I have seen Soma work with countless people and the results are always extraordinary. Now I am trying to get my daughter’s school to study what she is doing and ideally pay to have staff trained by her, though that seems highly unlikely, but I’m ridiculously optimistic… Anyway, all of this is to say that I am so glad you told me this. Thank you, thank you for being such a wonderful teacher and mother and human being.

  19. Thank you for getting it. Just thank you. So many parents think they have to mold us into good little soldiers, and your daughter is so lucky that she has a mom who will let her be herself. I used to think there was nobody else who got it like my mom did.

  20. I honestly think Emma has a better chance for a happy adulthood because of your attitude. It is a hard thing to feel like those words that came hard won out of your mouth in the first place are not acceptable. You take that lesson in young and for many years and not just about the words.

    You can say you come to terms with it but the accumulation of people trying to change you must have an impact that is profound.

    The goal of words if communication after all. A seeking to share with you something. Something you understood. This communication is supposedly the end goal of all that look at me garbage and say it this way and so on isn’t it? So she is there in a way. She is yet a child and just because she has autism does not mean that she needs to have who she is altered to have a life. That so few “experts” understand that I wonder at. She will grow and develop and know that you respect her. She will I hope not do what those treated in the more old school manner tended do and go into adulthood striving to find what was so odious about them that so much time had to be spent and quiet conversations had between the parents. I wish every autistic child could be born to someone who understands that their child is a person with their own way of being that should be nurtured not squashed or trained as you would a dog. Well to be honest my philosophy about the dog human relationship make that a bad analogy but one people understand.’

    I have an evil side which only comes out in print and thought but I would want expert after expert to justify what is wrong with Emma’s poetic grasp of language at such a young age. I can guess what they would say having taken many, many classes on how to torture autistic kids (well they were labelled childhood neurodevelopment and the like) My paper in the highest level course I took summarizes as leave them alone. To my professors credit she just remarked interesting and gave me my A plus, (I lived in fear of saying it but being me I could not leave it out)

    • So glad you did say it. Also love that she gave you an A+ Thanks for saying that Em has a better chance at happiness because of my attitutde. I hope and want that to be true. I definitely know she is happier now because we feel this way. The change is obvious and one of the first and almost immediate things we noticed when I began talking to Autistics and heard what they were saying about their lives and childhoods was how our relationship with each member of the family shifted. I remember saying to Richard – everything we thought was wrong. And as a result our interactions with Em changed dramatically and practically overnight.

      • Well I never did get a chance to find out what she meant. It was a little risky but because of a savant talent that had popped up a few years before in my work, classes where we the subject while the professors who knew were direct this was still an era where a few were bothered by the issue of if I knew. I heard them .

        I so badly wanted to be like the other students and after that work study I had no chance. Had my own mailbox at the department but I never checked it even though the secretaries begged me to. Grad students begging me just to look over the data. I wasn’t sure I could do it if I was trying so I didn’t take any jobs but any hope of anyone thinking I was normal while probably long gone were recognizably gone so I may have felt slightly liberated.

        This was a time when an autistic student wouldn’t have any way of finding another. My doctor tried to connect two of us once but the other student fled and I would have gone the other way if he hadn’t.

        Access to the internet would change that just before I got my degree but ever so slowly and I was in my own way as resistant to a lot of what I was reading and hearing as parents can be. It was actually when I had helped some actual children and knew it with the information I had and in real life that I made a less uneasy peace with my autism.

        I will never know what it would be like for you and Richard to abruptly switch gears or any of what parents go through. I feel that tug with the children I help a bit but I am not legally responsible. They didn’t come out of me even though they do have a tendency to somehow find me.

        I may already have put it but my latest not yet identified as on the spectrum (they gave him a care plan for every symptom of it but no diagnosis) had me on his gratitude chart. Slightly below Mommy and above chocolate cake. I don’t think order mattered but the chart had 6 or so things and that I was one and he was clear has left a weight in my heart.

  21. I love this both as a speech pathologist and as a mom!!! congrats on your new role as an AutCom board member, yeah!! bd

    Sent from my iPhone

  22. I like motorcycle bubbles! And it makes perfect sense to me. Rain and fireworks both sound very round to me…like bubbles. Both can be loud, too. And motorcycle engines, especially Harley engines, also sound round. I’m not a fan of fireworks, though. Unless they’re far enough away that they’re not loud. I like Harley engines as long as they’re not turned up super loud. They don’t need to be that loud and most aren’t. I enjoy the sound of rain and storms a lot, though. But all definitely sound very round and bubble like. I will think of that phrase often when I hear any of those sounds from now on.

  23. Pingback: In the News – October 2013 | The PsychoJenic Archives

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