extraordinary

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My child is not typical.

Trying to force her to be something that she’s not doesn’t work.

Let’s play a game, shall we?

Hey, mom, you need to be autistic now.

What?

Don’t worry; we’ll show you how. We’re going to give you therapy to make you autistic.

But I’m not autistic.

Not really relevant.

But ..

We’re going to teach you to act autistic.

All.

The.

Time.

But ..

That’s not who I am.

Yeah, we know, but you’re going to have to get used to it.

But it’s NOT WHO I AM.

No, it’s not.

It hurts to be told that who you are is not okay.

That how you see the world is .. wrong.

That how you act is … wrong.

That how you express excitement, show fear, communicate joy, share sadness, and, and, and .. are wrong.

It is a life of No.

It is an environment of negative, toxic energy.

No.

No.

No.

A gummy bear for not being you.

A sticker on a chart for acting like something you’re not.

It is exhausting.

It doesn’t work.

We cannot be who we aren’t.

Even if we can pretend well enough to convince the panel of judges.

Pretending to be someone you aren’t isn’t a life.

It hurts.

And it hurts no one more than her.

I will not strive for normalcy for my autistic child.

It’s an asinine and dangerous goal.

Low self-esteem.

Depression.

Alcoholism.

Drug abuse.

Suicide.

No.

My daughter is not ordinary.

She is not typical.

She is not a standard-issue human.

She’s much, much more.

I will do everything I can to arm her with the tools that she needs to get by in a world that doesn’t fit.

I will teach her what will be expected of her in every situation I can think to include.

And I will tell her, by word and by deed, that her quest is not to make others comfortable, but to find the space in which both she and others can be as comfortable as possible, together.

That it is not a one-way street.

That she has every right to say, in her way, The fact that I don’t fit the mold doesn’t mean that I’m the wrong shape. It means that we need a more flexible mold.

I once believed that normalcy was our goal.

No more.

Now, we strive to appreciate that which is, truly, extraordinary.

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45 thoughts on “extraordinary

  1. I am thankful that our ABA team, and our family, have always sought to arm our children with skills, not take away pieces of their selves. Their little selves who script or spin or topic twist or perseverate; all honored and followed.

    I am curious, and a bit concerned, what parts of your sweet girl anyone, or any therapy, or any team has tried to “make normal”? Is that how the goal is expressed? You shared a photo of B jumping, which was learned and hard won through therapy I think. That was a good “normal” thing to learn, no?

    I guess what I’m saying (badly) is that many earned gummies and stickers, and many learned “normal” skills, are helpful. Your post makes therapy sound mostly bad. Good therapy gives skills and honours and keeps selves.

    • Hi Jess – imbedded in your post you mention arming with skills and an understanding expectations, but the tone of the majority of the post is kind of anti-therapy, which I don’t think you are. I just wouldn’t want new parents to read this and think all therapy is bad therapy, or that any efforts to “normalize” (say, self-injury or aggression) are misguided.

      • I’m not remotely anti-therapy, though I don’t doubt that some will read the post that way. What I am is anti-normalization, or, to put it another way, profoundly opposed to indistinguishability as a goal.

        Some of the goals that we were first given for Brooke (and accepted as standard and worthy of pursuit) were designed to tamp out her “most autistic” traits. The clear message was that the most important thing we could do was to teach her to pass as typical. We would celebrate the extremely rare moments that she didn’t “look autistic” and bemoan the times that she was acting “extremely autistic.”

        There were programs written into her early IEPs designed to extinguish any kind of stimming – including but not limited to decontextual laughter, humming, squealing, spinning, etc. These were, we were told, “maladaptive” behaviors that, despite doing no harm to her or others, would “make her stand out among her peers.” That was enough to create behavior plans to kill, well, laughter.

        So no, I’m not anti-therapy. Not even a little. As you point out, it’s right there in black and white in the post above that I am desperate to give my kid the tools she will need to navigate the world and that one of those is an understanding of societal expectation. Therapy plays a huge roll in that. But I also firmly believe that any kind of treatment or behavior modification plan designed or executed without truly critical thought into what it is trying to accomplish, can be far more dangerous than none at all.

      • Thanks Jess.

        I am so very thankful for the team that surrounds our kids. Like Julia below advocates for, our two have only ever been given language and self-help skills, and precious little time was spent on changing them in anyway except perhaps “eye contact”… (only to the point that our kiddos knew where to go to look for certain information).

        I am very thankful that I didn’t understand the need for this post, for this message, until reading the outpouring of interest and fist bumps from parents around the world. I am saddened to think this post was needed, but as always thank you for being you and knowing the need and contributing to the space with grace.

  2. Yes to this! Because of your voice- inspired by (and often just directly quoting) Brooke’s voice, and other autistic voices, we’ve known it was okay to change our approach in helping our kids. And it’s made a substantial difference in their lives, and ours. Everything in this world is better when you have the freedom to be who you are. And I’m sensing a change- a small change, sure, but change nonetheless, in how autism is perceived. Voices are being heard. Because of autistic voices and advocate voices continuing to say there is space in this world for everyone, the world is changing. It’s exciting to see. So thankful for Brooke’s voice. So thankful for yours.

    • Everything in this world is better when you have the freedom to be who you are.

      Amen.

      And thank you for hearing Brooke’s voice, not just mine. It’s the whole point.

      • Someday, you won’t think anything of people noticing Brooke’s voice- it will just be an everyday thing. Maybe she’ll even have a blog of her own that we will all read:)

  3. I love your posts. I have to tell you I do not have an autistic child or family member but I have 3 children. I learn a lot from you. That my 13 yr old who doesn’t feel she fits in with the other kids is OK and to embrace herself for who she is. That my son who may fit the all American mold of the quintessential young man who excels in sports is unique and sensitive and to let him know it’s ok to cry and be passionate about life. That my 8 yr old who dedicates her life to being the center of attention; to stop and think that maybe she does need some more attention and to in fact give her some. Your beautiful family has taught me that although life is a struggle at times there is a lot to be learned from living life and not trying to change it all the time.

  4. I think this might just be the best post you’ve ever written. It may not be the most popular of viewpoints, but I find it to be the only one of worth and value. I’m commented before to let you know how honored I am to watch you journey through this change of perspective and I’m here again to tell give you an Luau a virtual ::fist bump:: and say YES!!! You’re getting it, Jess! I hope more parents are able to follow suit.

  5. My son’s “therapy team” helped him with speech and OT and used the principals of ABA while doing it. They were very respectful of him, his personality and quirks. But they did help him gain skills that lowered his frustration and helped him participate in family and school life more fully. I’m all for such excellent, respectful therapy.

  6. Jess,
    I haven’t replied for a while. I need to thank you for this post. REALLY thank you for this post. I made a huge move, half way across the country to work at an “Autism Treatment Center”…because of my love of the people on the spectrum. Long story short, they made the position sound ideal and made promises that they didn’t keep. I wasn’t able to make ends meet, so went job-hunting and now am in a perfect position, but I don’t have daily contact with people on the spectrum, and that kills me a little.
    At the ATC job, I felt like I was losing myself (and a little of those precious kiddos) every single day. It was the gummybear, M&M, sticker type place. It went against every cell in my body. It went against every thing I had ever learned -and I was mostly self-taught- on how to TRULY help my charges move forward, in their own ways and in their own time. I was reprimanded for doing things the way I did, thanks to the cameras in each “therapy room”. When I left, parents shed tears, “my kid has made so much progress with you.” It broke my heart, and I couldn’t tell them why I was leaving. If I could have taken my four boys and set up my own place, I would have…just for them…but obviously, I couldn’t.
    This post made me realize (and be at peace with) leaving that place. Not only because I HAD to because bills like to be paid…but because I HAD to because NOTHING about it felt right. You made me ok with feeling the way I did about their methods.
    You confirmed that what *I* prefer to do…and what “treatment centers” require to be done are completely different things…and to know that what *I* do is a much more healthy, positive way to go about it when it comes to allowing my angels to be WHO THEY ARE.
    Thank you.

  7. Wow, just wow. That was amazing. Seriously.

    My son is “lucky”, in that he hasn’t needed intensive therapy. We never had to look into ABA at all. I’ve heard great things about great therapists, but I also read Loud Hands (thanks to you), and I cried at what happened to so many in the name of Extinguishing and Normalization. My son can “pass”, until he can’t. He’s quirky, and full of such enjoyment of life. I want him to be safe in the world, but I also want him to be HIMSELF in the world.

    Thanks to you, part of my mission is to get the word out about the many facets of autistic behavior so the world might be more understanding of the differences. It’s interesting that we as neurotypical speak of dealing with discomfort and how it makes us grow, until something like autism comes into the mix, and suddenly it’s “You’re not normal, YOU be like me, I don’t want to be uncomfortable.” Ironic. Frustrating. Something to push back against 🙂

      • Love back! 🙂 I just sent this post to his team with the subject line “Indistinguishability should not be the goal”. I think they get it, but it’s good to keep putting this stuff out there so they KNOW.

  8. Reblogged this on Walkin' on the edge and commented:
    It’s all about perspective. I love this post, because it gets to the heart of why we need to understand our kids, our special kids, and not push them into a mold because we think it’s “easier”. I can’t say it any better than this post does.

  9. What a beautiful, interesting and relevant sentiment. It reminds me of deaf adults I’ve met who had no interest in becoming a permanent part of the hearing world, even when presented with technology that would allow them to do so. You are so wise to to recognize your daughter’s need to acquire the tools to live inside a system where she is in the minority while protecting her spirit, knowing should not and can not try to be someone she isn’t. With all the work you and your family, your daughter’s teachers, therapists, and everyone in her life goes through to make her existence in a non-autistic world possible, we should all bend a bit in our level of understanding and tolerance for someone who is unique.

  10. Amen, my friend. Amen. This is the heart of it, for me:
    “And I will tell her, by word and by deed, that her quest is not to make others comfortable, but to find the space in which both she and others can be as comfortable as possible, together.”

    I find there is an interesting dichotomy which I’ve seen in the realm of developmental disabilities and education (at least, in our corner of the world):

    If a child isn’t *obviously* impaired and has a chance of “passing,” all efforts are made to “normalize” through therapies such as you mentioned– to extinguish some of the very characteristics which don’t hurt anyone but which make the individual stand out. Yet, if a child *is* so obviously impaired that it seems an impossible task to change them (which I don’t mind!), then no one tries to. However, they also don’t get the supports they need in terms of presumptions of competence and understanding, of ability and potential. It’s simultaneously interesting and frustrating.

  11. you’ve probably heard this countless times. but as an autistic person, i couldn’t wish for a better set of parents or a better approach than you and yours. and I wont say that Brooke is lucky, becuase what she has is what we all deserve and to say she’s lucky marks her out as an anomaly which shouldn’t be the case . I just hope that with your education and activism the world gets out of the middle ages with its view on autism.

    I’m curious..how come you can accept and embrace and celebrate diversity when so many others buy in to the ‘fit in’ approach without a second thought? any idea what gave you that insight? do you have a post about it?

    • Oh, gosh, Mercy, thank you. And I agree completely about “lucky.” 😉

      As to your question, I think there have been a lot of factors that have contributed to my evolution of true acceptance and understanding, but none greater than two — my relationships with autistic adults and my quest to view the world as much as possible from my daughter’s perspective. And yes, the two are very closely related. 🙂

      Thank you again for your comment. It means a great deal to me.

    • I think the ‘fit in’ approach is very similar to the ‘fix it ‘ approach. Many parents set out on their journey terrified of the diagnosis and what it means for the future. It is easy to grasp onto the ‘fix it’ approach – because that means that this is something that will go away and you no longer need to worry about the future. And the ‘fix it’ approach has a goal – cure. The ‘fit in’ approach has a goal too – normalcy. The ‘embrace diversity’ approach is harder – there is no goal – there is no way to tell if you or your child is succeeding. No way to know if you are really doing everything you can to help. I think I am lucky to have grown up with myself and my brother having Learning Disabilities – I knew there was no ‘cure’ – and just like an LD you can not force normalcy, I do not learn the same as others. I can learn – but in my own way – and I am sure it looks strange, and isn’t as quick as everyone else – but it is my way and it works for me (sound familiar). My mother worked very hard to make me understand that this did not make me dumb – it just made me different. My ASD daughter is 4 – and my goal is to help her find her way. Even knowing everything I do – and seeing the similarities between my struggles and my daughters, some days I am still tempted by the ‘fix it’ (for me and her).

  12. Jess- What you say is so true – for ALL neurological diversity. My I have your permission to use this fabulous piece (with appropriate author credit) but alter autisim to FASD? I want the people in my sons life to hear this and relate it to what he faces. Thank you for your amazing example and powerful writing. I grow into a better mother and advocate for him every time I come here and read your words.

  13. I’ve been reading your posts for awhile now. I really appreciate the things you share and your insight on so many aspects of autism. My son was diagnosed at age 4–he’s 8 now. I spent so much time, energy, MONEY, on therapies designed to change him, make him more “normal”, help him “hide” those autistic tendencies that couldn’t be done away with totally. And his early IEPS–yes, the goals all focused on getting rid of the things that made him stand out as autistic. Over the past year or so I’ve really struggled with this, though, and I’ve come to embrace my son as the amazing, wonderful, quirky little guy he is, and I don’t want to change one thing about him, though there are many things I’d like to help him with so he didn’t struggle so much. Now my job has switched from fixing him to fixing those around us who want to change him! I love reading about Brooke and your family’s interactions with her! Please keep writing 🙂

  14. I love this. There’s such a huge difference between teaching me skills that will help ME–how to conjugate verbs! how to say “this is way too loud!” how to cross the street, how to use scissors, how to ask questions, etc etc etc–vs teaching me “skills” that only serve to make other people more comfortable–quiet hands, no tv talking, look me in the eye, etc etc etc. One of them helps me reach my full potential. One of them destroys me, and creates the world I have to operate in now, full of artificial barriers and systemized segregation and maltreatment for those of us who don’t “pass” well enough to get the human treatment.

    (This is not aimed at you Jess, but I can’t not say this: the problem with bullying is the bullies, not the behavior of the victim. Telling your disabled child to act differently for fear of bullying is *exactly* the same as telling your gay son to stay in the closet. It’s a hard world we live in, but it didn’t get that way by accident, and it can be changed–and we’re much, much more comfortable telling our disabled children to hide than we are when they have other targeted or marginalized characteristics.)

  15. I have twins, one autistic and one typical. My autistic son is always in the moment even when he seems not to be. He is loving, funny, and compassionate. He is the class clown if you let him. I once told one of his therapists about how he would zing out these one liners that would have you laughing so hard it hurt, not only because they were right to the situation at the time but because he was showing you that he was there right then. That therapist told me that he would put a stop to that. Thankfully I convinced the therapist that those moments were great moments that did not need to be “fixed”. That it was something we would consider normal in a typical child. Sometimes I think that therapy for autistics forgets that some of these behaviors that they are trying to stop would be appreciated or at least tolerated in someone considered typical.

  16. Undiagnosed until my 40s, when all the efforts to be ‘normal’ literally ate me alive. Autistic burnout is real, and I’m very lucky to be alive. I see all these efforts to ‘cure’ kids–or at least get them to mask their true identities–and my heart breaks for them. Being comfortable in your own skin, embracing who you are, is the biggest gift any parent can give to any child. Thank you for this post.

  17. Wow wow wow. I am a first year gen ed kindergarten teacher with a huge passion for learning from autistic children. There is one autistic boy in my class right now and I have neen struggling with how his case manager and para have been basically making him be “normal” thus demeaning the very things that make him special and so very wonderful. I do the best I can to listen to this boy and find ways to make him feel appreciated and awesome. But it’s hard when the others working with him are constantly saying no, no, no and sit still, look at me, stand straight, and the worst…be quiet (when he is nonverbal and working hard to use more sounds and words). Anyway, I am still not sure where to go from here, but this post, well it is perfect and is exactly how I have been feeling these days. Thank you, just thank you.

  18. wonderful writing, as always, and so important that people hear this message. i know my parents…who meant well, had good intentions…tried to “normalize” me over and over again; becoming like other people was their definition of success. it was never going to happen, just wasn’t possible…at the very most, i eventually learned to just mimic other people, pretend, just to hide inside of myself. i read this post and know that acceptance isn’t some meaningless word…it’s the possibility of a life without agony. it’s wonderful that you are able to see that so fully and articulate it with so much love and grace.

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  20. Thanks for this one.. I’ve been struggling since we “attempted” to go see a movie my son wanted to see a couple days before Christmas. Noise, environment, lighting, people yelling back at us to keep it down, everything added up to a disaster that involved trying to get a 19 year old non-verbal autistic kid out of a theater in full meltdown mode. He used to be able to go to movies. He loved it.. the popcorn, the peanut M&Ms, the movies he wanted to see. Then, about a year ago, everything changed. I don’t know if it was one experience that changed this for him.. that brings on terrible anxiety even though it’s something he wants to see. It kills me inside to see him fighting this battle.. I wish I could join the fight with a giant shield to defeat the demons. Since I can’t, we will enjoy movies at home where all the crazy factors can be controlled.. We’ll still have popcorn and peanut M&Ms and enjoy a movie together.

  21. Reblogged this on Spectrum Perspectives and commented:
    This is a very important post, I think, because it speaks to the individuality of each child (special needs or not), and our responsibility as parents to find the balance between protecting them by teaching them how to “fit in”/navigate society, and forcing them to be something they are not because we THINK it will make life easier. Life is never easier when you are not allowed to be who you are.

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