Bella is non verbal, and like many individuals with autism she has always had challenges with functional communication. Bella is also diagnosed with Pitt Hopkins Syndrome (PTHS) which is a rare genetic disorder that is characterized by developmental delay, breathing problems, seizures, gastrointestinal issues, and the lack of speech. I could only imagine how Bella may sometimes feel when she is trying to tell us something…
Despite Bella’s severe cognitive impairment, my husband and I have learned that Bella’s true intelligence is immeasurable. Thanks to augmentative communication and more progressive therapies, Bella has been continuously learning how to share her voice. For this week’s blog post, I’d like to do a way back playback of how Bella’s voice has evolved…
When Bella turned 1 year old, we started our journey working with a speech and language pathologist (SLP) through Early Intervention Services. Bella did not consistently communicate vocally, was unable to babble, and couldn’t reliably communicate her needs and wants. We focused on building her attending to a task, and her motivation to point, clap, and make sounds through cause and effect toys. Her therapy sessions consisted of us playing peek-a-boo under a blanket and pressing buttons on light-up toys. For the first few years of speech and language therapy, I sat face to face with Bella for 20 minutes everyday, hiding her favourite toy cow behind this farm house as I made moo-ing sounds to motivate her to look and open the door.
At the age of 3, Bella was diagnosed with autism and in that same year we hired an IBI therapist. Our IBI therapist always set high goals for Bella, and he helped us start our journey using the Picture Exchange Communication System (PECS). PECS is a teaching protocol based on verbal behaviour and the broad spectrum of applied behaviour analysis (ABA). In the PECS program, specific prompting and reinforcement strategies are used to lead to independent communication. Within a year Bella was able to walk to her communication binder, flip through 3 pages of picture cards, locate the picture card of a toy she wanted, and give the picture card to us in exchange for the toy itself.
The art of communication is fascinating to me. I honestly thought Bella would never be able to communicate with my husband and I. It still blows my mind today that she is continuously learning how to share her voice.
Over the last nine years I’ve worked with many SLPs for Bella, however I’ve learned that only a few truly understand how to support language development with an open mind. Three years ago I was connected with Sandy Sokol who is a SLP from the Children’s Treatment Network. She was by far the most compassionate, motivating, and hard working therapist I’ve worked with. Sandy taught me that the goal when working with individuals who have communication difficulties should be broader than just expressive language. Bella may never gain vocal speech, however that doesn’t mean that she can never learn to communicate efficiently.
At the age of 7, Bella was trialling augmentative and alternative communication (AAC) devices to communicate. We landed on an iPad using an app called Proloquo2Go. Sandy, Bella’s IBI team at Breakthrough Autism, and I began teaching Bella a functional and effective system of communication.
And this is where Bella is today with her voice...
Here is the homepage on Bella's iPad. She is able to use a few core words (e.g. go, come, help), and also navigate into a variety of folders to access specific 'foods', 'actions', and 'places'. To promote more communication from Bella, the 'toys' folder opens into another page of sub-folders where toys are organized in categories. All of Bella's toys are organized to mirror this folder so that toys are in sight and out of reach. This is the perfect way to reinforce Bella to use her iPad to request for what she wants.
Ta-da!
Here is Bella navigating into the 'toys' folder to request for her favourite toy giraffe. I now own 3 of these giraffes to ensure that she has access to it in multiple places she goes.
Here is a picture of Bella waving 'hi' after she has verbalized it on her iPad.
When Bella is hungry she is able to navigate into her 'food' folder. If she is very hungry she will continuously say 'eat rice' until I serve her favourite meal! When Bella is full, she immediately looks to her iPad to press 'finished', followed by 'go', as she never wants to miss a minute of her play time.
There is also a folder that she can access to give Kadence her commands. For example when it is Kadence's meal time, Bella presses 'wait' to instruct Kadence to wait patiently for her dinner.
Part of our bedtime routine is saying goodnight w/ her iPad. Bella is able to say goodnight to everyone in our family, and also request a 'hug' from Kadence!
Some of my #MomBehindTheLabel readers have asked me what kind of case Bella's iPad is in, so I decided to do a VLOG on the armour that protects her voice, check it out...
So, I have some awesome news about Bella's evolving voice. This week Bella started babbling! At her IBI clinic, she started making "muah, muah, bahhh, bahh…." sounds, followed by loud screams of excitement. We've been catching her making these sounds in the bathroom, in bed, and also during play time. Thank you to her community class team at school for capturing her voice. TURN UP YOUR VOLUME because this sound clip is definitely worth celebrating!