An AAC WWYD, for the professionals

A story for professionals:

Client/Student: 4 year, 5 month old girl. Pleasant, but self-directed. Limited attention span.

Language profile: Expressive vocabulary is extremely limited. Less than 5 clear words, with additional CV vocalizations that parents can reliably interpret. Receptive language is unknown, due to aforementioned self-directness and limited attention span.

AAC notes: Parents have rejected the AAC evaluation conducted by the district. They claim that the recommended device (a 32-cell speech generating device with up to 12 levels) is “too simplistic” and will not provide enough language. They have bought an iPad app and are attempting to implement it without professional guidance. All programming and implementation is led by Mom.

AAC access: Client has significant fine motor impairment. Parent-selected AAC app has 120 buttons per screen. Mom is confident that, with modifications (including a keyguard and/or homemade glove), access is feasible.

Session Notes: Client’s engagement during sessions is variable. Imitation skills are poor. Receptive language is difficult to assess, due to intermittent participation in planned activities. Parent, who is nearby during many sessions, reports that client understands many of the concepts targeted by clinician.

**Of note: Client refuses to acknowledge or access AAC device during sessions. Client infrequently attends to clinician’s modeling during sessions. Parent reports that client is able to use device independently, without prompting, for a variety of communicative functions (requesting, directing, commenting, and answering questions). Client has not demonstrated any of these skills in the presence of the clinician.

Clinician has been seeing client in the home, twice a week, for several months. No interaction with AAC device has been observed.

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What would you think?

What would you recommend in your report?

What would you say to the other SLPs in your office/network/online group?

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Maya was 4;5 when she started working with our home SLP (H). She didn’t touch the talker for months (MONTHS) in her presence. She only intermittently attended to modeling by the new SLP---often she seemed to not even acknowledge the device was there. I was the mom. This is not a fabrication, or an exaggeration----this is an accurate representation of the facts.

Fortunately, H listened to my reports. She provided advice and was a great AAC/language planning guide/partner, even though she never saw Maya use the device directly (she did see some videos). She believed, or at least acted like she did, and never made me feel like I had to “prove” anything.

I see, sometimes, professionals online who seem to feel like parents (or teachers, or paraprofessionals, or SLPs, or anyone) who believe in the capabilities of AAC users (when they themselves are not able to see these capabilities) are delusional. I see SLPs who claim ownership of AAC and are offended when parents (or other professionals) select and implement AAC systems without a full evaluation (or who reject a professional evaluation and “go rogue”). I see teachers who think it’s pointless to keep a device nearby, since they’ve never seen the kid use the device (or sometimes even look at it) anyway.

It’s gutting to hear these conversations (or to see them online).

Those kids are my kid.

Those parents are me.

I want to make sure you know what our AAC story looked like 6 years ago.

It’s easy to believe in her (and me) now, online.

It was harder back in 2012, twice a week, in person.

I’ll try to keep reminding you.

#AACfamily

(image is a picture of Maya, age 9.5, smiling while in motion, looking away from the camera)

The Great Bike Giveaway!

The Great Bike Giveaway is a program run by the Friendship Circle every February.  The goal of the program is to provide children and young adults (under age 30) with adaptive bikes (which can be prohibitively expensive for many families). Here’s how it works:

1. The Great Bike Giveaway partners with the manufacturers of many adaptive bikes, and the manufacturers provide the bikes at a reduced cost.

2. Each child has a fundraising page on the GBG website, where people can make tax-deductible donations (to the Friendship Circle) and help children reach their fundraising goals. If a family reaches their goal, any additional money raised will be distributed to help other children reach their fundraising goals. (The organization also collects general donations that are distributed at the end of the donation period, and bike companies donate some bikes, so that families who have raised more than 50% of their goal still have a chance of receiving a bike.)

3. Kids get bikes and are able to join in riding with friends, siblings, etc J

If you are interested in signing your child up, the link is here:  Great Bike Giveaway Registration (There are a number of different bikes available, so it’s worth speaking with your child’s physical therapist to determine which bike might be the best fit for them!)

If you are inspired by this program and would like to donate to help a family provide an adaptive bike at home, this link will take you to the list of fundraising pages (just scroll down to see them): Great Bike Giveaway 

After a few years of watching this program, we’ve decided that the timing is right for Maya to get an adaptive bike. Will is quick, quick, quick on his scooter and he’ll be moving to a big kid bike this year. Maya has tried scooters and a regular bike (with training wheels), which worked for a little while (kind of)--but now she’s so tall! A typical adult-sized bike doesn’t provide her with enough stability to actually ride. She’s been using an adaptive bike at school (during gym and physical therapy), so I met with her physical therapist to check out the one she uses and to review the different options and sizes. We were happy to see that the largest size (which will last through adulthood—she won’t outgrow it) is a perfect fit for her! We’re excited for her to have an adaptive bike at home, so that she can have fun riding around at the playground and outside, just like her brother and neighborhood friends.

This is Maya riding a Rifton adaptive tricycle at school!

(image shows Maya in a school hallway, with blue lockers in the background. She is sitting on a large red tricycle, smiling and looking away from the camera, hands raised triumphantly)

Diagnosed, again.

Last week we learned the results of a recent evaluation: Maya is autistic.

In thinking about how to write this post, I wondered whether readers (who only get snippets of her story) would be surprised to learn this---I thought that possibly, yes. (It didn’t really come as a surprise to us.)  I thought that, if I were sitting to tell you in person, you might ask, “What made you guys go in for the evaluation?”

There were 4 (ish) reasons.

Reason #1: (flashback with me) It’s June (2017) and I’ve just gone into Maya’s room after she’s woken up. As usual, she is using her communication device (“Mini”) as a light, shining it onto one of the various reading materials (magazines, brochures, business cards, papers) that she keeps in her bed. I sit next to her and she shows me what she’s reading---it’s an article in a local “special needs” parent magazine, introducing Julia, the new autistic puppet on Sesame Street.  She pointed to the article and said, “I might have this.”

(!)

I paused, waiting for the parenting-coach-fairy who is surely supposed to appear at such a loaded, important-feeling moment and whisper just the right thing for me to say, but no one appeared. So I think I said something that wasn’t dismissive but also wasn’t exactly jumping into a big conversation---like, “Oh really? Why is that?” or maybe “Oh, that’s interesting. Maybe! Did you read something good about it?” and then, after she answered, changed the subject and announced that it was time to go get Will or something.

  

Reason #2: A few weeks before this conversation, we had received Maya’s genetic diagnosis: MED13L syndrome. While waiting for her final results, I had read about the syndrome, and the MED13L gene, and learned that its association with autism is being studied. Not all kids with MED13L syndrome have autism, but many do. I had begun to wonder if it was worth exploring whether an autism diagnosis would be a fit for Maya. Her comments nudged me to look into the diagnostic process.

Reason #3: Over the past few years, as Maya’s communication and motoric skills have increased, we’ve been able to learn more and more about her---things that she loves (LOVES!), things that she hates, experiences that she enjoys and others that are “too much”, etc.  (For example, while we always knew that she enjoyed papers and magazines, it wasn’t until she could independently run across a library, move around a pile of materials, get to the rack of fliers/schedules, select a stockpile of them, and triumphantly return to sit and read them that we really understood how deep her love for them really is.) As the way that she thinks and interacts with the world has also become more transparent, easier for us to see, our understanding of her as an individual has deepened. At the same time, our understanding of “typically developing” children had deepened---Will is now in elementary school, and the way that he thinks and interacts with the world provided us with an interesting contrast to consider.

Reason #4: Over the summer I was fortunate to work in a high school that had a large population of autistic students (I’m currently completing a degree in speech-language pathology).  It was a fantastic experience, and I was able to develop a more complete understanding of the diversity that exists on the autism spectrum. It wasn’t difficult to imagine Maya as a member of that community (well, other than the fact that it meant imagining her in high school---eep!).

When we initially met with the doctor to talk about scheduling an evaluation, she asked, “Why are you seeking diagnostic clarification now? Are you looking to change schools? To seek insurance approval for something new? What brings you in at this time?”  I considered the question. Maybe a diagnosis would change our path at some point in the future, I said, but right now we were really here for . . . culture, kind of.  In the past I’ve valued (and prioritized) Maya’s ability to meet and interact with other AAC users, because it’s important to connect with others in your community---people who share a unique perspective and set of experiences. To that end, if Maya is autistic, I want to be sure to help her learn about that part of her identity and support her ability to find and connect with peers in that community as well.   

This is a diagnosis that doesn’t change anything, because Maya still is who Maya always was. But it’s also a diagnosis that changes some important things: it may provide Maya with a deeper understanding of herself. It supplies a framework for family discussions about neurodiversity and more meaningful dialogue about why some things are more challenging for Maya than they are for Will, or for us (her parents).  

We’ve introduced the concept to her, and now we’ll follow her lead.  The other day she wanted to add the words “autism” and “autistic” to Mini, so I sat with her and opened up the editing screen.

Me: Ok, we’ll add autism and autistic. Where do you think they should go? 

(kind of holding my breath, because the screen she chooses will give me my first glimpse into how she's internalizing the concept of autism)

Maya: (looks at home screen on Mini)---(selects FEEL)

Me: That’s a great choice! Oh look---this screen is full. (taps to return to home screen) Where else might be a good fit?

Maya: (considers) (selects THINK)

Me: Perfect J

 (image is a screenshot of the THINK page in her device, with the words "autism" and "autistic" added on two dark blue buttons toward the bottom of the page. Maya chose the location, buttons, and images)

A few notes:

1. We’re choosing to use identity-first language (e.g. She is an autistic girl) as opposed to person-first language (e.g., She is a girl with autism). This is a decision based on years of reading pieces by (and interacting with) disabled self-advocates and autistic self-advocates, and also general gut feeling. This language choice validates autism as a central part of the way Maya thinks and interacts with the world---an important part of her identity—rather than viewing it as a disorder, something that needs to be fixed or cured. Thank you for respecting our choice.

2. You may notice that I said “There were 4 (ish) reasons.” This is because there are 4 reasons that we’re going to talk about here, and some other things that aren’t open for internet conversation. 

3. The online world of autism is a little intimidating. Anything that I write is coming from a place of genuine good intentions, but I may end up getting things wrong. I’m listening and learning as I go.