Today’s guest author is Chantelle Hyde.
With a background in Business and Education, Chantelle now advocates for Disability Supports and Human Rights. Always proud of her accomplished adult son, Eric, she is delighted daily, caring for her non-speaking autistic daughter Lily with her wonderful husband Sheldon. Chantelle is also a volunteer with the Alliance Against Seclusion and Restraint.
When I think back to the long road that we’ve been down when it comes to augmentative and alternative communication and using an AAC device, it’s unreal. When a speech-language pathologist (SLP) tells you that it will take a child 2-3 years to begin to grasp this new language, much like learning any language during typical child development, they don’t figure in the potential years of advocacy. For us, it was an additional 5 ½ years.
Some of that time was spent advocating for current technology, such as the iPad I set up with Proloquo2Go after some research and a fundraiser we held. For a child who had only 20 words at the time, our daughter gained eight new words in one hour with a borrowed iPad. Instead, schools wanted to continue trying Picture Exchange Communication – PECS, which our daughter had no interest in after four years of limited attempts.
Proloquo2Go is a robust app that allows users to communicate using folders and picture buttons that speak the chosen word/phrase when touched. This app has a full range of language, images, and options to customize. There are several apps on the market like this, so choosing one that works for you and preferably is familiar to your speech-language pathologist is essential. This type of technology was vital to me because of the versatility, robust language options, ability to customize immediately, and our daughter’s preference over picture cards.
When we lived in British Columbia, Canada, two months into her kindergarten year, our daughter was suddenly being sent home at lunchtime instead of at the end of the day due to “unmanageable behaviors,” said to be caused by her extensive difficulty with communication. Our daughter was almost entirely non-speaking at that time.
Yet for six months, every day, I put the augmentative and alternative communication (AAC) device in our daughter’s bag and asked nicely that they use it to teach and support her, with no luck.
One day, her very sweet EA whispered to me that she was so sorry, but she wasn’t allowed to take it out of her bag. I was appalled! She was willing to teach our daughter how to use it, but they wouldn’t allow her to – this was completely unacceptable.
I called for an urgent team meeting at the school and brought our social worker from The Ministry of Children and Youth with Special Needs, who needed to do no more than introduce herself. When the Principal suggested that the team was there simply to discuss our daughter’s communication needs, I interrupted and said, “we are here because I asked for this meeting. It took $18,000 of their money (pointing at the worker from the Ministry) to get our daughter to the point where she was willing and physically able to point at her augmentative and alternative communication device to begin to learn how to use it. She’s been attending half days for months because you say that behaviors arise due to her difficulty with verbal communication. And yet for six months, I’ve been sending our daughter’s augmentative and alternative communication device in her bag, and you refuse to take it out and use it or teach her how to use it.” Now, you might want to sweeten your approach, but I was past being so nice. Our daughter was losing half of every day at school.
They began taking it out of her bag the next day and having the SLP train the EA on how to model the use of the device. It was a huge step.
Don’t be afraid to speak up in front of your team. Maybe try catching more bees with honey if you still have the patience to be sweet. Be confident and persistent if you know that an Augmentative Communication Device is what your child needs. It might be new to the team, and they might be intimidated at the prospect of learning how to use it themselves, and this is the most common barrier we have encountered on this road.
Providing this essential support to children with limited verbal abilities can be critical in many situations. It can be crucial in providing the user with the ability to tell you what has happened in their day. Finding the words “school, scared, hurt” can tell a lot. I wish our daughter would have had those words when she was being locked in a seclusion room at her previous school. When I asked about our daughter’s situation in recent AASR Live Events, Dr. Ross Greene and Dr. Mona Delahooke suggested augmentative communication as a critical support aspect for a non-speaking person.
Unfortunately, we had SLPs from kindergarten through grade 5 who were unfamiliar with the software and could never guide us past our one-page initial setup on Proloquo2Go’s basic level. It was little more than a choice board of nouns on the iPad. Since we couldn’t seem to move past food or toy requests after we first moved to Northwestern New Brunswick, Canada, we were left flailing to a great degree on making progress. I needed an SLP’s appropriate direction. And we needed much more from Proloquo2Go.
Then finally, in the summer of 2020, after moving to our new District, our new SLP recognized the need for core words, verbs, phrases, etc., and started us on a new path, with an updated iPad to ensure updated software compatibility. Then she set up a new user profile at Proloquo2Go’s intermediate level. Our whole communication and AAC device world changed!
We could finally begin to learn how to model for our daughter appropriately, with words, sentences, phrases, personalized folders, personal pictures, and even expressions that sound enthusiastic and playful, with little “Ella’s” voice that we chose for the device to speak. As parents and our daughter’s team, we could finally learn to model general speech for her, not just requests.
We set up Guided Access in the iPad’s settings to ensure that she had access to only this app and could not open the settings or try to change the buttons. See the shaded area at the bottom of the above image, which guided access allows you to determine by drawing around areas on the screen. The setting was necessary so that our daughter wasn’t trying to play game apps with what is only ever used as an augmentative communication device. A dedicated device is best.
Since then, we’ve spent several hours training with our speech-language pathologist over Zoom and at our home. Every word that we try to teach her, we also try to teach her on her device. I can proudly say that her incredible team is terrific at teaching her the folders and buttons in relevant situations and where she can find things like mommy and daddy and home. The team has shown her how to answer school and after-school program questions and even to ask us to watch her favorite movies.
We reached a turning point recently. After 18 months of modeling and some directed use, she began asking for her iPad when she wanted to watch Dumbo but didn’t have the verbal ability to tell us.
This was only a few weeks ago. Now she can tell our respite worker that she wants to take a shower and is even able to show me “go-to inside school” on her own in the morning. It’s truly amazing!
This device has been used so much for modeling and her use the last 6-8 months that the iPad began losing power at about 3 pm. Can you imagine losing your voice every day at the end of your school or workday? So we began advocating for a second iPad with our provincial funding support, stressing the importance of communication support at all times and showing her progress, along with a recommendation from our new SLP. The Family Supports for Children with Disabilities program in New Brunswick has been an enormous support for us. And they were able to help us with her second iPad, and another obstacle was removed.
Our SLP does a significant amount of training and planning with our team and works directly with our daughter. She spends a lot of time assessing and developing goals and materials and customizing this augmentative communication device. She recently helped determine that Apple’s AirDrop is the best option to keep our two devices in sync.
To sync Proloquo2Go on two devices:
- Have the devices beside each other.
- Back up the user on the updated device.
- Export the Backup, and share it with AirDrop.
- Accept the pop-up message on the second device to update to Proloquo2Go.
It requires a high level of team collaboration to make this all work and ensure that the entire team and ourselves have the AAC skills needed for our daughter to learn and use her device. We are very fortunate to have this in place at this time. Spending time developing good working relationships with your team is very important to achieve this.
It can be intimidating to learn a new language of any kind, so don’t be hard on yourself if you find it scary at first.
Learning how to use an augmentative communication device can involve a learning curve, but remember that it will for your child as well. Please have patience with yourself, as you will with them. Hopefully, you can arrange to have some modeling done for you by your child’s SLP on how to model the device for your child as we did.
You can also access tutorial videos on Proloquo2Go’s website.
Once you get familiar with where things are and a little with how to model, the anxiety begins to go away, I kept reminding myself that we needed to learn if our daughter was ever going to learn. Wow, was it ever worth it! I’m so proud of where we are on this journey. I can’t even imagine where we’ll be in a couple of years, but we’re very excited to hear what our daughter has to say!