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)