rethinking functional behavior — and the tyranny of made-up deadlines

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stim

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Yesterday, I wrote a post about teaching Katie to respect other people’s need for downtime. I talked about how I think it’s really important that we ALL be free to exercise our individual interpretations of time off the clock. One of my favorite readers left the following comment on that post:

C’s thing is to grab 2 of her dozens of favorite stuffed animals, and sit n the couch, facing the arm. And rock, and look at her “guys”. Functional? Not at all. But After a long day at school, and some kind of therapy session coming in the next hour (she has either ST(2x a week), OT(1x), or ABA(3x) every. Single. Day. After school), I know this is what she needs, and I let her be.

This is what I wrote in response:

If something serves to calm and soothe, I call it functional. Truly, what a fabulous “function” to perform in a world that can so often be devoid of true comfort.

xo

Let’s take a look at how we define functional behavior, shall we?

Since, as you know, I’m a firm believer that behavior is communication, I’d argue that ALL behavior is functional. Behavior serves to communicate, therefore it has at least one purpose. Done.

But if we end there, this post will be really short, so let’s dive just a little deeper.

When I started on this journey with my autistic daughter, I was led to believe that it was my most sacred and pressing responsibility to make EVERY moment count. Time never stops ticking after all, and mystical, magical, made-up deadlines for skill acquisition approach and pass before we even wake up in the morning no less pour a cup of coffee. So I was taught to scramble and hurry and make Herculean efforts to use every second with my child productively because, according to the accepted autism Zeitgeist, these arbitrarily assigned and agreed upon limits on our windows of opportunity slam closed every second and if we, Heaven forbid, miss one? Well, I shudder to think of what might happen.

Time to deconstruct, friends.

Ready?

Buckle up.

Yes, earlier is better. Early Intervention works. Recognition of and support for one’s individual temperament and neurology, particularly when they diverge from the ‘norm’ is terrifically helpful. But … (you knew that was coming, right) ..

BUT ..

Assigning deadlines to the possibility of development is not just asinine, it’s really, really dangerous. One of my favorites? If a child doesn’t have words by his or her fifth birthday, s/he won’t. Want to know where that gem come from? Somebody’s arse.

It’s simply not true. I’ve seen it disproven time and time and time again. Sure, the words might not come out orally, but for the love of God, if we start discounting the possibility of their very existence past a certain age, we’re telling everyone out there above that particular threshold to give up on trying to access them. No, just no.

The book that I am reading, and can’t stop talking about, I Might Be You, was written by Barb Rentenbach. Barb did not have what we presumptuously like to call functional communication until she was nineteen and began using facilitated typing. At seventeen, she started, for the first time, to think in words. In her thirties, she published a book that I can’t stop talking about — not because it was written by someone who didn’t previously have words, but simply because it’s THAT good. Please, stop for a moment and take that in before you continue reading. It matters.

There are no limits, there are no deadlines, there are no closing windows that can’t at the very least be propped open with faith, persistence, patience and love.

But still, we buy into this Early and Often paradigm. And who could blame us when it’s slammed down our throats at every turn? The every moment is a teachable moment! The every second is an opportunity to drill, to reinforce, to generalize!

Hurry, people, for the love of God, hurry! And whatever you do, make sure that every waking second of every day is serving a purpose toward the greater goal of …

Well …?

Of …?

What is the goal?

I’d argue, as I have before, that the goal is creating an environment which enables our children to grow into adults who have the tools to live a happy and fulfilled life, in whatever form that may take for them. But .. (you knew this one was coming too, didn’t ya? Damn, you know me too well) ..

BUT ..

Not at the expense of their childhoods.

I’m going to say that again, just because I feel the need to drive it home.

Our children deserve to have childhoods. Happy ones. Comfortable ones. Playful and play-filled ones. Stimmy, squealy joyous ones. Ones in which they learn and grow and discover the world in their own ways.

But how does that happen when we’re always fighting the clock?

It doesn’t.

We have got to break free of this bullshit paradigm of artificial deadlines — of the need to rush, rush, rush to teach, teach, teach to drill, drill, drill — to make every moment a “productive opportunity.” Because when we release ourselves from that pressure, we allow our autistic children to BE CHILDREN. And by God, how freeing is that? (For everyone involved.)

Once we can all take that collective deep breath and agree that opportunities for growth and development are not finite, we give ourselves the luxury of looking at things through a different lens. A slower one. A less pressured one. An unpanicked one.

So, after all of that, let’s ask the question again …

What is (or isn’t) functional behavior?

Many behaviorists would argue that stimming is, by definition, the opposite of functional behavior. To be clear, I’m using the concept of stimming in its broadest sense here: flapping, spinning, rocking, scripting, staring at mindless TV, rollerblading back and forth on Mama’s bedroom floor, scootering in wide circles around the kitchen, watching YouTube videos in slow motion (or fast forward!), pacing, humming, staring at dust mites as they dance in the sunshine, watching light and shadow dance across a wall.

Many behaviorists (and teachers and therapists and other parents and friends) will tell us that those things aren’t functional. They say that stimming doesn’t tend to be interactive (though if we get creative, it can be – ever sat and watched dust mites together? It’s kinda awesome.) They say that it doesn’t serve to communicate (unless we’re actually paying attention.) And, above all, they love to say that it doesn’t accomplish anything (unless you believe, as I do, that providing a feeling of safety and comfort, offering relief from paralyzing anxiety, allowing for a reclamation of control in a world that rotates on someone else’s agenda, easing overstimulation, or even (gasp!) just simply making a human being feel good is not just something, but a whole hell of a lot.)

So, to sum it all up in two sentences:

If something serves to calm and soothe, I call it functional. Truly, what a fabulous “function” to perform in a world that can so often be devoid of true comfort.

xo

And there I leave you, dear readers. Right back where we started. What is functional behavior?

Every

single

thing

we

do.

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83 thoughts on “rethinking functional behavior — and the tyranny of made-up deadlines

  1. Thank you… This quote, “There are no limits, there are no deadlines, there are no closing windows that can’t at the very least be propped open with faith, persistence, patience and love.”. Needs to be shared with every dr., therapist and every support institution around…

  2. AMEN! and, um, have you been in my house lately watching my girl watch her YouTube videos in slow-mo and frame-by-frame? How did you know??? Anyway, I stare mindlessly at my laptop for hours a day…is that ALL functional behavior? Nope. Do I sometimes sit on my couch and watch a string of ridiculous reality TV? Not very functional. I think everyone needs downtime. BTW, my lady will be a Freshman as of 2:55pm with a 3.75 GPA. I think she is practicing some functional behavior when she needs to! xoxo!

  3. Now I’m tearing up. I feel, so often, like it’s all too much. But there’s this pressure for NOW NOW NOW, while she’s young! Her behaviorists tell me she always needs to be doing something “functional”. That it’s not good to let her get ‘lost’ and stimmy away. I know she needs it. She deserves time to just BE. And I try to give that to her every single day.
    You’re so right, it does serve a function. To relax. To decompress. To just BE. I’ve spent so much time talking to her therapists and working on creating opportunities for what they call “appropriate functional behavior” and “play skills”, I lost the fact that giving her that time to decompress is not only functional, but important to her over all happiness and well being. And a reminder to take some of the pressure off of myself, too. Thanks Jess, this is why I love you xo

  4. “There are no deadlines.” It’s all just human constructed way of making us feel comfortable or common. Why must we have these arbitrary limits? I find each day I embrace my son’s wonderful quirky behaviors more and more. I can’t think of something that made my smile bigger than when my son flapped and squealed and smiled while the wind blew through his hair and he watched the waves crashed against the shore. What a pure expression of happiness! Rather than stifling this expression of joy, we need to embrace it! The freedom to express ourselves in any way we can!

    • I’ve been flunking the “Will have attended at least one social activity” goal for the last 9 years. The Internet didn’t count as a social activity, otherwise I’d have passed with flying colors. I finally allowed myself to put that goal away, and have never been happier. It’s so much easier to hear a conversation typed than verbalised. Less work for my poor brain. If that makes me isolated and/or lazy, so be it. To all the psychiatrists and counselors out there: I have a community online that is just as real, solid, and supportive than your real-life one!

  5. “Our children deserve to have childhoods. Happy ones. Comfortable ones. Playful and play-filled ones. Stimmy, squealy joyous ones. Ones in which they learn and grow and discover the world in their own ways.
    But how does that happen when we’re always fighting the clock? It doesn’t.
    We have got to break free of this bullshit paradigm of artificial deadlines — of the need to rush, rush, rush to teach, teach, teach to drill, drill, drill — to make every moment a “productive opportunity.”

    And this of course is just as true of our NT children – just read the NYTimes and the relentless articles on parents pushing their kids to be in the right PRE-SCHOOL, so they can get in the right kindergarten, etc. etc. Hiring tutors for tests for pre-k. Making sure that the kid has EVERY kind of extra-curricular (planned of course) activity so that their resume will look good so they will get into an Ivy-league school.

    Why? (my personal guess is so the parents look good, but that’s just me…. my kids are meandering through life just fine, involved (or not) in the activities they choose (although I will confess to a bit of coercion on occasion for my AS son, just to get him out of the house), getting good grades but not feeling like the world will end if they don’t….

  6. As a speech therapist and a mom of a little boy with autism, i undeniably understand “the deadlines” myth. I work against them everyday. Then i feel guilt when i come home and allow him to watch Thomas on youtube in Japanese for the 100th time. But i have so many times thought what you have just posted, just not as eloquently stated! What a beautiful place you are in! You have inspired me to create that difficult balance between working on all those weak skills and also celebrating his “nonfunctional” moments, allowing that downtime that he needs- heck, that we all need!

    • I thought my son will never grow out of Thomas. He did. It took him a lot of time and a lot of $ but he did. I work for Lego now:)

  7. Dear Jess,

    Thank you for your important post. My son communicates very poorly, so I want to believe Barb Rentenbach’s story more than anyone else in the world. But it’s just another facilitated communication hoax; she is simply typing what her facilitator tells her to:

    Here, she presumably types on her own:

    But alas, someone forgot to include the result in the video. I’ve seen this before with other cases of miraculous development of “communicative” abilities. Of course they’ll be able to aggressively explain it off somehow, probably calling me an insensitive bigot, but I can assure you that you’ll never see any evidence of genuine communication from her. Make no mistake: The book was written entirely by her facilitator.

    With best wishes,
    Don

    • Don,

      I have begun to communicate directly with Barb since finding her book, and I can assure you that as skpetical as you may choose to remain, she is the one with whom I am (gleefully) conversing.

      The book took her ten years to write, one painstakingly pressed letter at a time. As she describes in the book, her need for support (faciliation) declined gradually yet dramatically over that time, until all that she ultimately needed was a light touch to the back (as you see in those videos) in order to type independently.

      There will always be those who are unable to see beyond their own limited parameters of what qualifies as communication, but there will also, thank God, be people like Barb (and Carly Fleischmann and countless others), who continue to show us what is possible when we are willing and able to open our minds.

      Best,

      Jess

    • I also have to add, and I swear that I don’t mean to be flip here, but I’m thouroughly confused by the fact that you put up videos of Barb very clearly typing independently as proof that she is incapable of typing independently.

      Are you insinuating that the hand on her back is guiding her finger toward particular keys? I just don’t see how that’s possible. If your point is simply that the process of typing is clearly arduous for her, you’re right. It’s why the book took TEN YEARS to write.

      I’d add that I don’t discount the dangers of facilitated communication. In the wrong hands, it can undoubtedly be desperately abused. But I’d urge you to read Barb’s book before assuming that’s the case here.

      • I don’t know the details of your personal communications with Barb, but it looks very much like the hand on her back is guiding her to the keys. The only difference from classic FC is that the facilitator is holding the shoulder and not the arm.

      • I would refer you to both my and Ariane’s comments above. I’m baffled by how the facilitator in either of those videos could be guiding Barb to a particular key by touching her back. Even if she were pushing her forcefully in a general direction, it would be quite the feat to actually control her index finger or pencil that way.

    • Don – Having spent a fair amount of time in the actual presence of not only Barb, but many others, all of whom type to communicate (Tracy Thresher, Larry Bissonnette, Jamie Burke, Jenn Seybert, to name just a few) I can tell you, you are wrong. Completely and utterly wrong. I would hope you would see this as good news!

      I understand the disbelief many feel when watching someone who appears one way and yet types things that suggest otherwise. But to dismiss Barb’s hard work, the years she spent to complete this book by calling her a “hoax”, a word I have seen used in connection with every single non-speaking person I know of who has dared speak out, is yet another way to “silence” those who cannot reliably speak, yet do communicate through typing, many of whom now type independently!

      • Whether or not Barb is really communicating can be easily determined by having her type something the facilitator has no way of knowing – for example, show her a picture of an object that is hidden from the facilitator’s view, then have her name it. Is that too much to ask? Can you direct me to any REAL evidence that FC is working?

      • I am really, really confused by this. Are we looking at the same things? I’m not asking that to be combative; I’m trying to understand, because truly, I don’t. I’m watching someone type with a hand on her back. (And if you go to Barb’s website Muse and Mule Productions, you’ll see that she no longer even needs that) and yet you need proof that what? That the thoughts are hers? That she’s capable of thinking them? That the person behind her isn’t somehow magically nudging her toward specific letters one at a time? I just don’t get it.

        While I appreciate the need to ensure that facilitators never manipulate, it doesn’t seem to me that that’s where your skepticism is pointed. If it’s really that hard to believe, even while watching her type independently, that someone who looks like Barb can actually have thoughts like Barb’s, then I am just heartsick over how much work we still have left to do.

        http://muleandmuseproductions.com/about-the-book-i-might-be-you/

      • Jess, you are letting your emotions obscure your judgement. I looked at the videos on the website and I don’t understand what you mean. “First FC Day with Jeremy”: Do you really believe he has nothing to do with what she’s writing? He’s literally putting her finger on the keys. And why do you think you never see what she’s writing in the independent typing videos?

        Heartsick? please. Do you think advocating for those in need means endorsing every form of miracle intervention? People were outraged when the fallacy of facilitated communication came to light the first time. Why do you think this is different? Because you like what she is “writing”?

      • ok, clearly we’ve reached an impasse. i’m asking you about the videos above, in which barb is typing independently and you’re responding by talking about the very first session she had. if you read the book, or the page to which i linked, you’ll see that this was a long, slow, arduous process, as so many things are when one’s neurology is different from the norm. but using the starting point to discount the result is patently absurd.

        you’re right, i am very emotional about this. because it scares me to death to think that my daughter could be this easily dismissed or feel that she has to prove herself simply because narrow minds refuse to believe her capable of .. well .. anything.

        i’m not advocating for a miracle intervention. i’m not even advocating for facilitated communication conceptually. i’m advocating for a human being whose work i admire, whose friendship i’ve been blessed by and who shouldn’t have to carry the burden of proof on her shoulders because she dares to have something brilliant to say.

      • Yes, we have reached an impasse. You say “I don’t discount the dangers of facilitated communication”, but you are clearly discounting them in this case. I don’t consider typing with an arm on the shoulder independent typing. You can clearly see the facilitator nudging her towards the letters. And the last, “hand over hand” video? I am just as touched as you are to see her interact with her caretaker, but is she communicating her thoughts? Absolutely not! I urge you to watch a Frontline episode from 1993, the heyday of facilitated communication. It shows how subtle the cues from the facilitators can be, and how the whole thing completely breaks down with simple, objective testing.

        Even a villain like me believes Barb has real thoughts and feelings. Before you accuse me of being unsympathetic towards her and others, please consider the evidence very carefully. Maybe you are doing greater harm to her than you’re accusing me of.

      • I give up. I really don’t know where else to go with this. You have apparently, for reasons that I can’t discern, decided that Barb is incapable of communicating her thoughts in writing and I have decided that I’m grateful that she does.

        I am growing increasingly uncomfortable carrying on this conversation without her, so I’m going to leave it at that. I’m sorry that we leave off so far apart.

  8. When my kid is doing “nothing functional” on the outside, she’s creating worlds in her mind. She’s asking and answering the great existential questions, and doing a pretty good job of it. I know because sometimes she shares with me.

  9. When every moment is a teachable moment, kids are frustrated and parents are exhausted. I will forever be grateful to our home services OT (who is now a cherised friend) who told me point blank, “he needs downtime. They work him hard at school all day, he should be able to relax when he comes home and so should you.” Amen.

  10. I thought we were the only ones that watched dustmites. My daughter loves to beat the sofa cushions when the light shines just so bc she knows it will create (rather embarrassingly for me) a huge cloud of the little suckers. I sit with her and we watch them. She got so excited the first time I told her they were fairies she almost knocked me out with the ensuing hand slinging. Now she watches dustmites, i mean, fairies, and I watch her. There is a joy there than can’t really be explained. And sometimes I watch the fairies too. I agree that they are kinda awesome.

  11. For years I was anxiety ridden and panicked over whether I had done all I could to help my daughters. I lived by the adage make every moment count, look for those teachable moments. I was miserable and so were my girls.

  12. I am thinking of this post and of Barb’s wonderful book and of my son and how if we didn’t have his buy in on something it just didn’t happen. All the therapies and resources and dollars I felt compelled to throw at him and in the end his refusal taught us to, as Barb says “Be still. Be quiet. Be. And now be with us.” which is so damned hard to do when that anxious voice in your head is ticking like a timer on progress. But, learning to just Be. Learning *how* to listen to him, was the greatest gift/therapy our family ever got.

  13. This statement hit me “Many behaviorists would argue that stimming is, by definition, the opposite of functional behavior.” I’m a mom, well, yeah, you already know that and I’m an autism mom. And guess what? I have a masters in psychology and am trying to go back for a masters in counseling with a concentration in applied behavior analysis.This is because I am an autism mom that I chose to study this way. I’m not saying this to toot my own horn here but to say this…I couldn’t agree with you more!! I want to be that therapist that shows parents that their behavior is functional and is their child’s form of communicating to them what they may not be able to verbally. The concept of functional behavior is one that is again just put there to place categories and in essence limitations on what our children can or should be capable of but we have to sit and listen, if not with our ears, than with our eyes and pay attention because they are talking and they are telling us what is going on. We just have to let them be and be along with them and learn. Does that make sense?

  14. Thank you for giving me strength to continue to fight the arbitrary deadlines given to my sons. A speech therapist told me that she wasn’t making progress with my youngest son any more, and that he was too old now – his speech patterns were set and wouldn’t improve. I knew she was wrong, but I also know that she is incapable of helping him and we have to find someone who can. I’ve also been told that his handwriting is not going to improve – again, he’s too old. And again, I know that that is wrong.

  15. As a middle aged man on the spectrum and with two children on the spectrum, the point about the tyranny of artificial deadlines is one I stress all the time. Those artificial deadlines cause more problems for both parents and those on the spectrum than anything else I can think of. I came from a family with strong spectrum traits on both sides. Worrying about deadlines in a family where it is normal for the children to both exceed and fall behind on such deadlines regularly gets pretty silly. Especially in earlier times when you had many children in most families these things tended to even out.

    Now when I am asked by a family (usually the mother) about what to do with a new diagnosis of autism, the first thing I tell them is to get rid of the baby books and manuals because they will be WRONG. (I suggest a bonfire with hot dogs and marshmallows, but I digress.)

    This is all a part of the acceptance: Stop comparing and actually look at the person before you!

    John Mark McDonald
    Scintor@aol.com

  16. Amen, and Hallelujah. Thank you for helping me release some of the guilt for not being “on it” 100% of the time with my son, and for letting him decompress how he chooses.

  17. Jess, this is an awesome post. Your message about functionality is one we should all heed in our nation where the work-life balance is so off-kilter it actually causes health issues that lower productivity, for all.

    In other news, your blog belongs to you. When people randomly divert attention from your message with tin foil hat theories like psychic back massage typing, you are not constrained by “free speech” to give them space on your page.

    Love,
    Ib

  18. As someone met all the deadlines way ahead of schedule, and as a result (of that and no one twigging onto the differences in girls back in the ’70s), was never diagnosed, one of the most freeing things of realizing my autism at last was permission to take sensory breaks. I’m hypercompetent, but it costs me SO MUCH, and the ability to say, “I’ll be back in a few minutes, but right now, I need to be in a dark room and listen to a fan so I can come back stronger” is something I’ve needed my whole life.

    So even when I feel like I should be interacting with my autistic almost-11yo–playing a game, practicing skills, SOMETHING–I can finally allow myself to not fill every second, because it doesn’t just cost him the freedom to decompress, it costs ME the resources I could regain with just a few minutes’ break.

  19. Your post was just passed on to me by a Dad I know. Beautifully written and important! Might I suggest you check out the SCERTS Model. Your insights about emotional regulation being of the highest priority, and all behavior being purposeful and communicative have been at the core of our model for a number of years, and our work for the past 3 decades. We have questioned the tyranny and inaccuracy of the “window of opportunity closing” for many years in our research, writings and trainings. Check out http://www.SCERTS.com for information about SCERTS or many free downloadable articles on my website (www.barryprizant.com – under Resources and then ASQ articles). The wisdom of parents and people with ASD needs to get the attention it deserves! Thanks, Barry Prizant

  20. My head has been spinning for several months. I can’t sleep. I eat to much. I have a one year old to take care of. My 4.5yr old was diagnosed with Asperger’s a couple of months ago. I feel my head spinning out of control. I close my eyes and find myself at a crossroad. One side pulls me to acceptance of my daughter’s “quirky” behaviors. The other side tells me to “fix” her. One side tells me to change the world around her. The other tells me to change her so the world will accept her. It’s either black or white. I can’t seem to find the middle ground. I have tried to stop reading your blog for awhile to see if I could get my thoughts straight and make the right decisions for my daughter that will affect her now and for THE REST OF HER LIFE. I keep coming back. You and your readers are the only ones that make sense. The only ones that truly get it. What it is to live it. We are military and with that comes enrollment to an EFMP program with pushes ABA. Three hours every day of what I have been told is intense therapy. Do I really want to do this to her? Your post raised even more concerns. She has come a long way. ON HER OWN. With no help from anyone. She figures it out in her own time and her terms. Yet. She struggles. She lives with anxiety. Afraid of people.

    • cont… How much should I push her? Have I pushed her to much already. I(we) ask so much of her already. Now we are going to be added another person that will be pushing her out of her comfort zone. How much is to much to ask of them? Does Barb Rentenbach ever recent those that pushed her to all these therapies?
      I’m so sorry for the length of the comment

      • I am autistic and I don’t need “fixed”. It’s society’s relentless and asinine demands and expectations that needs fixed. Who says that they’re right, anyway? I may have anxiety, and may not venture out often, but I am so much more than my anxiety: I am persistent, determined, kind, smart, et al. It may take me more time than most, but I will eventually get back up on the horse after falling off. I am a person in need of acceptance and understanding, NOT a cure or a “fix”.

        The best thing that my mom did for me was to teach me manners, responsibility, life skills, and the believe that I can achieve anything I want. The path may be harder and longer, but if I want it badly enough, then, by god, I will figure out a way to do so. Come to think of it, all people have that option.

        Listen to your daughter and what works for her. Listen to your instincts. At the end of the day, it’s not going to matter if she doesn’t give you eye contact. What will matter is your daughter and her happiness.

        As for her “quirks”, I strongly advise you to read Temple Grandin’s and John Elder Robinson’s books, and to observe how their quirk worked for them.

    • Oh, Ruth I can feel your pain radiating off the screen. I get it. But there IS a middle ground. Know how I know? I live in it. No ideology or methodology fits completely. Life just doesn’t work like that. Create your own. Follow your gut. It knows. What does that mean in a practical sense? That ABA might be a helpful tool for her, but that you work TOGETHER to decide what the goals are. That you carefully monitor delivery to ensure that you and she are comfortable with it. (She’ll ‘tell you’ if she’s not!) That you seek help, but never allow anyone to put dogma before your daughter’s individual needs.

      You can do this.

      I promise.

      Deep breath now. It’s going to be okay.

  21. I love the way you think. Check out Hands Free Mama sometime–she’s on the same page. Trusting that God’s timeline for our children may not be our own but is the best one. It’s key. And it’s healthy for our souls.

  22. Such an important message (several, actually), although I couldn’t help but guffaw at “psychic back massage typing” (Ib Grace). Couldn’t have said it better myself!

  23. Love, love love your message. Seriously. Love. So excited to read this, to be affirmed with what I’ve been feeling for so long, even though I’m continually labeled as ignorant and stubborn and in denial about my children. And those words against me and my beliefs about my children’s capabilities fade when I read your words, as if they were meant just for me: you’re on the right track. Continue with what you’re doing. But then… reading down the comments, seeing the people questioning these autistic minds because they are not “functioning” in the same way as you or I… it breaks me. Seriously. Breaks. Me. Because mine, too may be nonverbal. Mine, too, will certainly be questioned. Dismissed. Overlooked. Not recognized for the extraordinary, uniquely talented, wonderful little boys they are. And it’s hard to block out that “noise,” even when there are people like you, like Barb, like Carly, like Landon, like countless others saying what should be a recognized truth by all: that every. single. person has value. Every one of us. It’s so hard to stay positive when the doubters and the labelers are so aggressive in their arguments. So, thank you again for what you do and who you are.

  24. I agree as well! My son’s stim is that he needs to hold a “long skinny.” This can be a pencil or a spoon or a stick. It makes him feel balanced and happy. Also, at 12 years old, he continues to learn new things at his OWN PACE. There is no deadline for learning.

  25. Thank you so much for this. I have been struggling with this ever since my son was diagnosed in February: am I doing enough? Is he receiving enough therapy? What else should we be doing? Because there’s no time to lose! Your words helped me to trust my instincts that he needs time to play, to be with his sister, to pace in the yard and run his fingers through the dirt.

  26. “By now, _________ should have happened,” is an excellent way to deprive oneself of peace and steal one’s awareness away from the blessings inherent in the moment. There’s nothing that needs doing, there’s nothing that “should be” happening. Sometimes that’s really hard to see, especially when we’ve set up expectations for the future. It can seem like we’ve failed because what we thought should be happening doesn’t match what appears to be happening.

    But all of that’s appearance. A seeming. It isn’t real. I think people tend to think that they’ve “failed at life” or are failing *something* if what they see doesn’t match what they think they should be seeing. It’s impossible to fail at life, to fail at anything, really. If it doesn’t turn out the way you planned, it still turned out a blessing. You can choose to see it or you can choose not to see it, but the blessing is there regardless. Blessings don’t get angry and stomp off just because they aren’t recognized.

    Therapy doesn’t [necessarily] equal love, and love is what everything, regardless of appearance, needs to be reminded of. Most of what I remember from my childhood is noise and “too much.” Everything was too loud. Colors, brightness, touch–too loud. Too noisy. Too much. I tuned out because I had to, and spent the next twenty years thinking there was something terribly wrong with me because I would rather be writing and drawing and talking to plants than “build friendships” with human-shaped things; a bright “beautiful” sunny day had me running indoors for cover, but I could walk forever in the rain; school was torture and I was chronically sick; and there were [and still are] times I thought my body’s senses were trying to kill me.

    What I needed was to know that it was okay to be how I was, that there was nothing wrong with me. I needed to know that my experiences and reactions were valid for the coping skills I had at the time. I needed people to stop trying to get me to “be like other kids,” and accept me as I was. It may not seem like a lot, but I’m crying as I’m writing this–trust me. That is the *world.*

    I love you, as you are right now. I accept you, as you are right now. Who doesn’t need to hear that or have that communicated to them in some way?

    There’s still a lot of noise. Sometimes I can cut through it, sometimes I can’t. But either way, I’m loved, unconditionally and without measure. Everyone is. That’s what binds us, what makes us one regardless of the appearances. It’s not the relationships we make, not the therapy we log, not the things we do, but the fact that all is loved in equal measure always. It never changes, always stays the same. Coming into that awareness and allowing oneself to just be in that blessed place is possibly the only thing worth doing with time. That’s where everything is, where everything communicates with itself, not in words, not in behavor, not in doing, but in being. …it’s hard to describe…but it’s peace and it’s love without fear.

    I just found your blog and I’m looking forward to reading more. Thank you for your writing and your beautiful work.

    • And I’m in tears reading what you wrote. Welcome. Right here, you are exactly as you should be. Always.

      And this –

      Blessings don’t get angry and stomp off just because they aren’t recognized.

      Yes.

      Thank you for pouring this out here. It’s a gift.

  27. Thank you. So. Much. I feel my four year old needs his downtime especially after a whole day at daycare where his friends love to hug him, caress his face (basically they treat him like a doll, it’s not mean, they love him very much, but it could be a little much sometimes) and where he is constantly stimulated. It’s no ABA, it’s not even a therapy at daycare, but I still feel it drains him. When he gets home, all he wants to do is hit his head on the couch, hum, play with strings or just wander in the living room. Then the guilt hits me…. I should do this with him, I should do that. The ST said to work on this. The OT said I had to do that with him. Time’s-a-tickin’! A race against time it seemed…. Thank you again Jess. You put in words what my heart feels. Thank you…xox

  28. well friends im pecking out a just response, a chapter really. i adore your passion and will do my best to help educate and machete a path for my younger siblings. i beg your patience as my style of hoax typing is f-ing slow. love patient and forgiving b

    • I can’t wait! To say that someone has no words breaks my heart. Yes, breaks it. And if one more person tells me I am too emotional when it comes to anything about autism, well, they will see emotion and it won’t be pretty. Thank you, Jess, for always putting into words so beautifully what I cannot. And thank you, Barb. I just bought your book and I can’t wait to start it. Love and light to all.

  29. I agree with you totally. As far as the skill acquisition deadlines go missing one is not the end of the world or is there permanence to the situation. It is a delay!
    Aaron Likens is a young man I’m acquainted with. He like my son is on the spectrum. Aaron wrote a book Finding Kansas. He also is a public speaker. He works for Life Skills Touchpoint Autism Services were he presents on what it is like to be a person with Autism. He also writes a blog Life on the Other Side of the Wall. He has an analogy that I really like. He says that early intervention is important. He says, think of concrete. Not impossible to change but when concrete is wet you can stir it when it is set it takes a jackhammer. Not a direct quote but that is the general idea.
    So the concrete sets. Nothing is impossible to change.
    We have to let our kids be kids. If they miss a milestone or a skill acquisition deadline, oh well! I’d rather invest in that jackhammer and let my “S” be a happy kid.

  30. My son started all day school this past year, and I decided that what he needed most when he came home was a snack and at least an hour to choose what he did. Many times his choice was video games or a movie. Now that the weather is so nice, we take a large comforter out in the yard and we lay on it together. We aren’t talking much, we aren’t discussing what we see, we are just being. Enjoying the sun on our skin and the smell of fresh air and listening to the sounds of our neighborhood. It took me awhile to realize that just because a game says it is for ages 3 and up, does not mean that I need to do it with my 3 year old. (conversely, UNO claims to be for ages 7 and up, but I play it with my 3 and 6 year old. Arbitrary.) And in terms of language, there are some basic sight words that he doesn’t know, and yet he has a huge vocabulary of much more advanced words that he recognizes. I love this post.

  31. Thank you. I’ve always believed that when my son comes home from school he’s home. I can’t continue the ABA at home, he’s had it at school for 8 hrs and I know I’d be tired. So, I let him be. He’ll play with toys, run around and into the couch, jump off things and play with his sister if she’s inclined. I only stop what could hurt him, which is what a parent would normally do. We spend our weekends going to the park, zoo and stuff families should do. I encourage all the words I hear but I love just letting him be. Playing is a form of learning. But that nagging voice in the back of my head always said ” You should be doing more.” Now I know as long as he’s making his own progress, we’ll be fine.

    It’s nice to not be alone in thinking I have child and he deserves a childhood.

  32. A beautifully written post and such an important one too. I have two sons that are preemies (one a 26 weeker and the other a 30 weeker). My eldest and earliest has cerebral palsy, delays in fine and gross motor, and as he gets older we are noticing a tendency for him to not stay focused. When he was younger I was all about trying to reach those unreachable “milestones” in early childhood development. He would struggle, get frustrated, tired, and then meltdown (and so would I!) I have since come to realize that he and I are both happier when we don’t cram in extra OT, PT, Speech, and Therapeutic Swimming. He still has therapies and his homework takes a bit longer to get through, but I don’t panic and think each second needs to be a productive one in the way society tends to define productive. In my book, watching dust mites or just being are productive too. I agree with you that every child deserves a childhood.

  33. First. Thank you for this post. Just what I needed and what so many others need to hear.
    Second. This notion of letting kids be kids is just simply incomprehensible to some people. There are several apraxia mommas whose blogs I follow or social media follow. I swear some can make you feel like the worst parent for not spending ridiculous amounts of money (which I don’t have) on week long (+) intensive speech therapies with the top “apraxia experts” in the country. Sorry I don’t have an extra couple thousand dollars to hand over in return for a few more words and alot more meltdowns because my poor little sensory seeker is out of routine and doesn’t have her “piwwow” to squeeze all day. I feel like I let her down when I don’t spend as much time as I can “practicing words/sounds”. I want her to have fun and enjoy life. If it means she may be a little farther behind in this marathon than Johnny over there so be it. At least she will still like going to therapy when he shut downs and refuses to go because he spends 3 hours a day in whatever therapy is the new “cure”. I may be slightly bitter but it’s hard being a working mom and trying to do the “right thing” and meet these so called “deadlines.” Thank you Jess.

  34. As the parent of a son who’s been clean for nearly a year, just got a job, and finally seems to be getting his feet on the ground, I’ve come to be highly distrustful of #$%&! clocks. I realize my situation is way different from yours, but please know I support and love what you have to say. Well-deserved Freshly Pressed. Keep kicking ass. Thanks and peace, John.

  35. Weight lifters and runners need to give their bodies a rest in order to achieve the best results. I think this is true of the mind as well. We need to have times of relaxation and rest in order to process our learning. Work needs to be balanced with periods of fun and rest. This is true of typical children and adults. Why wouldn’t it be true of people with autism, CP, or other conditions? The rules work the same.

    My oldest daughter, who is on the autistic spectrum and is high functioning, could not read past the 1.5 grade level until the 8th grade. But in the meantime, while learning other things, her special education director suggested that she sign up for Reading for the Blind, because her severe learning disabilities made her effectively blind for reading. She spent hours enjoying books on tape in her room. By the time the switch turned on for reading, she had already learned to enjoy the rhythm of stories.

    Now, she is 27. She has a college degree, and works part-time at two non-profits.

    (I will be putting the words in this reply into a post in my blog in the near future at http://www.annkilter.com – a blog about transitioning to adulthood.)

    I am firm in my belief that we should never give up on our children. That facilitated communication works in many cases, and even if progress is not what the facilitator might hope for, there is still value in spending that time with the child/adult for both the child/adult and the facilitator. Connections count for everyone.

  36. Pingback: Milestones | annkilter

  37. Pingback: The Bet, Take Two | Pucks and Puzzle Pieces

    • Also, though there are many things about Brody’s late diagnosis (at age eight) that made this journey harder, the one real plus was the absense of any pressure to meet someone else’s deadlines.

  38. I read this and thought of my sensory teen. He is a sensory seeker, and I am always being told he is too much of SOMETHING. He can be overwhelming. However, he is above all else a hummer. It has grown to actual music these days, rather then sounds, but he uses it to be calm and focus. For a time we put him on medicine and the humming stopped everyone was so happy he was quiet. Except instead he became aggressive. Now he is back to humming and much happier boy. I learned my lesson.

  39. This is an amazing blog post. It echoes my thoughts and opinions on the topic. Thank you for writing it. I really want to read Barb Rentenbach’s book now. It sounds amazing.

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