unlock and unchain my daughter

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Before Evie turned three, she had some verbal language and she could sign quite well.  Then it left.

It left in little bursts so that we almost didn’t realize it was happening.

“Autism Regression.”  We were told.

“Epilepsy.” We were told.

And we accepted this.  We accepted it because these were things that we can deal with.  I accepted it because autism was a relief to hear.  And Epilepsy, well there is a med for that, right?

We started trying to use PECS (picture exchange communication system…I believe).  But I never really bought into it.

It was so rigid in its implementation.

Evie would play with the symbols which is strictly, not allowed.  They are crinkly and velcro and very appealing to a sensory seeking kid.  Heck they are kind of appealing to me to mess with!

We weren’t allowed to use it at home as she hadn’t progressed far enough through the phases.

To me, your language…your ability to communicate…cannot be withheld from you because you haven’t hit some magic number of successes with “trials.”

Imagine if you could only use your language at work.  Or at home.  Or in the grocery store.  You can only use your language at work because you haven’t mastered everything there is to master about language.  I’m sure I am over simplifying and misunderstanding the reason for the PECS rules but you get the point.  And I don’t care because that’s what it feels like.

Language needs to be accessible.

So I, unknowingly, handed over the key to my child’s ability to express herself.  And I helped to lock her up and chain her inside her own head.

It has been over 3 years since we started PECS.  Almost four.  Her current SLP, agreed that it wasn’t working at her IEP meeting last week.  He has moved onto a 3d object exchange system which he says is working.

I have my reservations about it but am totally in favor of throwing a bunch of stuff at the wall and seeing what sticks.

At the beginning of this year, September actually.  I started putting pressure on Evie’s school team for an augmentative communication evaluation.

At first they ignored my emails all together.  And when I would bring it up in a meeting, I would get blank stares and mumbles.

Then I started getting the arguments that Evie would not make eye contact if using technology.  That having outside agencies make recommendations would muddle things–I believe that, “too many cooks spoil the broth” is how it was put.

After expanding our team to include an outside psychiatrist who all but insisted that Evie have the evaluation, they finally sent in the referral.  Which only the school team can do.  Which is free by the way.  The evaluation just got scheduled yesterday.

The current argument is that; although, Evie is an IPad whiz kid–you should see her navigate around that thing–navigating the ipad and using technology for communication are two entirely different things.

Which I can see.  Sort of.  But can’t she learn to navigate to communicate?

More importantly, why the hell can’t we try it?  And try it with the same enthusiasm all of the other therapies that we’ve thrown at her have been given.

I don’t know if technology is the answer.  But I do know that Evie is capable of using technology.  I know that it can be accessible.  I know that it can be limitless in a way that PECS books and 3d objects are not.

I do know that it is worth a try and that my mama instincts are really keyed into this.

I’ve been told that Evie’s receptive language is almost as limited as her expressive language according to school testing.  But I am not buying that.

I see that she understands.  I think a good deal more than anyone, myself included, probably realizes.

The tests.  They are just tests.  Which may or may not be suited to Evie’s abilities.  Which may or may not reflect Evie’s true abilities.

My last post helped me to meet this fabulous group of autistic adults.  And you will be hearing a lot about what they say, and what they think when I have their permissions to share.

THEY, the adult autistic community, are the experts.  And THEY should have everything to do with developing therapies and education for autistic children.

If you’ve never been afforded the opportunity or worse taken the opportunity to get to know an autistic adult, this might seem outlandish to you.

If it does, YOU are so DEAD WRONG.

These people are so incredibly and mind bogglingly intelligent.  They are funny.  They are caring.  They are sweet.  AND they are compassionate.  A revelation to you if you have bought into the whole stigma that Autistic people lack emotion.

If you care about my daughter, Evie, if you care about me, you WILL listen to what these people have to say.  And you WILL accept that these people, and ONLY these people are the true experts on Autism.

And while no single person is exactly like another, including the individuals that comprise the Autism community, they have the closest thing to insight that we have available.

And they are an untapped think tank.  A pool of knowledge that we disregard.  That disregard in itself tells me, tells you, that we, the population at large, know almost nothing about autism.

This morning, I was linked to this.  And if you don’t have the time to go read it, let me surmise it by saying that Evie may not have “regressed.”  She MAY have shutdown her communication.  You can shutdown for seconds, moments, or years.  You can shutdown visually, you can become temporarily deaf.  Your receptive language can shut down.  Your expressive language can shutdown.

And why is this so important and exciting to me personally?

Because long ago, I handed over that key to my Evie.  And I haven’t even known that I should be looking for it.  And I haven’t given her all of the tools to look for it–instead I have chained her to rigid systems like PECS.  I don’t know if that key to Evie’s ability to communicate is still out there…but I think it is.

While she may never regain verbalization, she still says, “mama” and she still says “ball”.  And I know that she has so much more important stuff to say.

And you know what?  For the past three–almost four years, these Autistic adults are the ONLY ones that, I feel, have, genuinely, assumed that Evie will find a way to communicate.  They are the ONLY ones that have believed in my daughter’s abilities without ever meeting her or knowing anything but what they read on my blog.

I would say I am moved, by them, beyond words.  But look how much I’ve written.

So my eternal thanks and gratitude for these wonderful people.  And I’m off to look for the missing key and to free my daughter from the chains that bind her to rigid therapies in favor of those that are fluid and dynamic–like Evie.

 

 

 

 

 

 

18 thoughts on “unlock and unchain my daughter

  1. Gah, I just cannot understand the outlook of teachers who don’t think that anything in the realm of communication is worth trying! I don’t! WTH?

    I don’t know much about the PECS system; I didn’t have any alternative communication system when I was a child, but I know this: to become proficient and comfortable with *anything,* I need time and space and mental privacy to experiment with it myself.

    As for eye contact, for me it’s actually a hindrance to communication. If I’m being coerced to make eye contact, I can’t reliably do anything else, it’s so overwhelmingly uncomfortable.

    I don’t understand the “navigating the iPad and using tech for communication are different things” objection, either. If she’s already comfortable navigating the iPad…isn’t that GOOD, that she has a medium that she’s already comfortable with, that’s almost infinitely adaptable?

    • It did make more sense when the SLP explained it. Although I still don’t believe it isn’t adaptable. Something about understanding how to navigate being different than understanding communication using any medium. So I think she could learn to use her technology navigation abilities to communicate. His other argument/fear is that she will focus only on the technology and not the communication. I don’t really understand that and I haven’t been given a satisfactory explanation of that rationale. And Evie taught herself how to use the ipad in the privacy of her man cave (she stole it from my husband and claimed it as her own). So I totally see how she, like you, would need mental privacy to figure it out. Thanks for providing your insight again 🙂 You’re so helpful!

  2. If she’s using the iPad, you might want to consider Proloquo2go. It is an amazing AAC application and incredibly cheap for what it does. You can customize it for Evie and start small with buttons for her to ask for drinks or food and it can grow with her. I know adults who use Proloquo2go as their only method of communication and I’m talking about adults who leave me in their dust when they start talking about philosophy and other deep-thought topics that I’m challenged in. So Proloquo2go can serve a *lifetime* of communication growth. If you’re interested in a great blog post from an adult about how Proloquo2go not only helped her communicate but helped her handle a challenging social situation she couldn’t have handled otherwise, read this blog entry:

    http://ballastexistenz.wordpress.com/2012/06/25/communication-page-i-used-to-handle-that-invasive-woman-i-met/

    And you can find Proloquo2go here:

    http://www.assistiveware.com/product/proloquo2go

    • Thanks Sparrow. One of the problems that Evie has had with PECS is that she does not attend to the picture or make a correlation between the picture and the actual object. My husband bought an app where we can take photos and make our own icons which I am not sure would be much better. But I’m thinking if we start with a few highly motivating foods, it might work. Do you think that the icons are better than actual pictures? We have been hesitant to try implementing it at home without “expert” help. We finally have the augmentative evaluation coming scheduled…maybe I should wait to see what they come up with.

      • Hi! I just started reading your blog thanks to it being linked from Thinking Person’s Guide to Autism. It is so refreshing to read your words! I am a friend to several autistic adults and a special educator. I often find that my way of working with autistic kids is not necessarily in agreement with the other professionals’ ideas. The perspective you’re bringing to these professionals is so valuable! So many people come from the perspective that a child’s behavior is communicating refusal, avoidance, etc. rather than communicating something much more important: Their sense of self, their desires, their will. Things that are vital to keep in tact. Your daughter is so lucky to have you standing up for her, and hopefully soon she’ll be able to communicate more easily for herself. Which gets me to the original reason I started posting, good golly miss molly I wrote you a novella first: A lot of people work well with actual pictures, rather than picture symbols. I hope trying with desired food items works for Evie, but if not it’s so clear that you’re just going to keep trying to find something that does work.

      • Thanks Briana! From one novella writer to another 🙂 Her SLP said he did try photos too at our last meeting. Evie doesn’t attend to the pictures which is, I guess, why the 3d symbols are working. I had asked him to put a photo or a symbol on the back of the 3d object so that she might begin to make the connection but he doesn’t feel we should do that yet. Shrug. Something will click for her. And I just know it is going to be the technology. I just know it.

  3. I shut down visually, partially, from 2006 to early 2012. My visual processing is still coming back in bits and pieces, although it never was and never will be “typical.” The technology will not get in the way of communication any more than PECS boards will get in the way of communication or 3D objects will get in the way of communication. Sometimes, for me, *speech* gets in the way of communication.

    • Thank you for sharing your experience, Paula. I had no idea that these shutdowns happened to people. I have never been a big fan of PECS–hopefully that isn’t part of the reason it didn’t work. I don’t care what method of communication Evie settles on, as long as it is accessible for her and she is comfortable-ish using it. Although, a couple of years ago when PECS was first introduced to our family, I was pushing for more speech therapy. It is only now that I am coming to better understand how many things, speech included, can get in the way.

  4. hi, i have appreciated your two recent posts, which i have found via facebooks connections. Bravo! Your links at both top and side of this page are busted (to “What’s A…” The beginning of…” and “how we view”).

  5. Another program you could try on the iPad is Tapspeak – there are several versions, but my daughter uses TapSpeak Choice. She is three, non-speaking autistic and moderately deaf. TapSpeak can do the sequencing stuff that proloquo2go can do, but it can also start off really simple. For my daughter – who won’t point to paper pictures or 3d items and has no spoken language (she lost it all at about 16 months) – we put two pictures on a page at a time (though the program can go up to 54 pics on eage page I think). We chose tapspeak just because it could be simpler to use than proloquo2go, for our daughter, at such a young age and with multiple other disabilities. We use actual pictures that we can put into the program as well as the PECS symbols that come with the program.(I think you can also do this on proloquo2go too), and we started with motivating things, so basically she just gets to boss us around a lot when we are practicing. 😉 she has “more or finished”, “hungry or thirsty”, “play or break” and a slew of choices for her toys, friends, foods, etc. We just use it all the time. Whenever it looks like she has an opinion on something, we try to guess at what she has an opinion about, pull up that page and hand her the iPad. It does take a lot of practice and consistency at first, but she is making great progress on it. I am hoping that soon she will be able to be independent with it. Your daughter has an advantage over mine in that she can physically manipulate the iPad on her own, so if you can afford it, you should really give it a try. If you do, though, take the iPad everywhere she goes,so she always has access to her “voice.” PS – one big difference between these two programs is that Tapspeak is only on the iPad/ iPad mini, but not on the iPhone or iPod, where proloquo2go can be on both.

    Whatever you do, follow your “mama gut” over what the therapists tell you. You are a great advocate for your daughter.

    • Erin, thank you so much for this thoughtful reply and advice. I will check out this program–it sounds great too. I’m glad your daughter is having success with it. Mama guts unite! 🙂

  6. You go with that gut mama!!!! Your daughter sounds remarkably like my son Andrew, in so many ways, including the epilepsy, the wandering, no sense of danger, horrible sleeping patterns, etc. You sound remarkably a lot like me: TIRED. Here’s the deal: the school can suck it. Your daughter needs to be given the opportunity to use amazing technology that can literally transform her world. It’s not going to happen overnight, and it requires a dedicated team at school and lots of practice at home, but I swear to Moses that if you find the right program, the world will open up to her. When we used to do the PECS with velcro strips, it was painful to watch. I know that for so many, it was and continues to be better than nothing. But what the iPad does (and we use Proloquo2go with our son) is provide the means to not only communicate, but learn new language, and develop a “voice.” You need the right training, and so does the staff at your daughter’s school – but whatever you do, do not give up on this!!! It’s been a year and a half since we began implementing the iPad and we continue to see progress in Andrew’s communication – both receptively and expressively. I am a first time reader here, but I’ll be back. You and I? We’re gonna be friends. I just know it.

  7. You don’t mention, but have you continued to sign with her, or tried it again recently? When verbal language isn’t available to me, signs and gestures are infinitely easier to access than some enormous game of pictionary with arbitrary icons for what I’d like.

    • Yes, we continue to sign Ali. But Evie doesn’t really have the fine motor to sign back. She does a lot of hand guiding–which is rudimentary but the best we have right now. Thank you for sharing your thoughts.

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