*This blog post is a follow up to last week’s blog on Jaxlee’s journey to communicate with us. If you haven’t read it, start here!
Most of my readers know this but in case you are new here, let me introduce you to my girl Jax. She is our amazing firstborn daughter. She’s beautiful and courageous, and has the strongest spirit I know. She was also born with some difficulties that later led to a Cerebral Palsy diagnosis. You can read about her birth story here and more about our family’s story here.
One of the biggest hurdles we had was that Jaxlee couldn’t speak. Everything I thought about motherhood, from nursing to teaching her how to say mama and ball were gone. Those typical experiences were not a part of our story. It has been a hard road, but we have always been determined to let go of our expectations so that we can best help Jax.
International AAC Awareness Month is celebrated around the world each October. For those of you in the speech world, either as a parent or a Speech-Language Pathologist, this is a phrase you know well. The goal is to raise awareness of augmentative and alternative communication (AAC) and to inform the public about the many different ways in which people communicate using communication devices.
My hope in sharing about AAC and its impact on our life, especially Jax’s, is that parents who are struggling to support their nonverbal kiddos would see this as a source of hope. And for the SLPs or SLPAs who read that, that they would have the tools to help their clients get access to AAC.
My daughter is 6 now and uses AAC to speak. This is her only form of verbal language. She has been using it consistently for about 3 years now and it has been quite the journey for us both. We can communicate with Jax on a daily basis– something we didn’t have for 3 years.
We are committed to it because we’ve SEEN how amazing of a difference it’s been for Jax. So last year I went to a two-day training on her AAC program, LAMP Words for Life. This training was geared towards speech professionals who use AAC in their field but parents were welcome to attend as well.
I can remember sitting there in a room full of SLP’s & SLPA’s when the question was asked by an SLP, “How can we get more parents on board with getting their child to use AAC?” If you are an SLP or SLPA… I’m sure you have had this question too! Your heart is to support your families but sometimes convincing them to believe in AAC is the biggest hurdle.
I quietly raised my hand as one of the few “moms” in the room to give some feedback to this question.
This is a bit of what I shared at that training:
You see in your world of speech, AAC is a normal thing. It’s a common word used in your profession and it may even be a common means of communication for those you work with. It’s talked about among your colleagues and you are versed on it in your education. You see the benefits of AAC and how more people truly need access to this form of technology. So it makes sense why you don’t understand why more parents are “on board” with going the AAC route for their child.
To us as parents, it goes a bit deeper than that. As a mom to a child that is non-verbal, this is not how it is supposed to be. I anticipated hearing “mama” as her first word and melting at the sound of her sweet little voice. I never heard the word “mama”, or any word for that matter. That was a huge loss.
When it came to AAC, I remember thinking, what IS that? You want my kid to speak with a robotic computer? Am I giving up on my dream of hearing my child actually use her voice one day? How am I ever going to learn this new piece of technology and program? I can hardly get her to all of her therapy appointments on time, let alone learn a new language?
This is all so overwhelming to us as parents. We are grieving the way we thought things would be for us and for our children. We are working through some real emotions and pain; we need your support and your grace.
But AAC is a tool that can empower both kids AND parents. With that being said, here are my tips to therapists who are trying to convince parents to use AAC for their child.
- Start by sprinkling information to the parent. Start small and be consistent. Give the parent some real time to digest and work through what you are recommending.
- Show how well you know their child. Explain to the parent that you see some real brightness/brilliance in their child and you think they are capable of learning AAC. Make sure they know YOU know their kid and what you see in them.
- Get clear on the benefits– for both the parent and the child. Talk about how it would benefit both the parent and the child!? Perhaps less meltdowns and tantrums? Less behaviors and “situations” you would have to avoid. More social interaction and opportunity for the child. Opportunity for education and learning. Share a few videos from YouTube of kids using AAC so parents can actually see what it looks like & how it can work. Inform the parents, kids who only speak with AAC can also learn to read (this was mind blowing for me). You don’t need to be able to “talk” in order to be able to read. This right here was enough motivation to get me on board.
- Talk about the lifelong impact. This is the rest of my daughter’s life we are talking about. Sure, it’s hard now and it will continue to be hard. But if it means she will be able to make friends on her own one day, interview for a job, or order her own food at a restaurant, by all means I am going to do everything in my power to help this girl get there. This was the tipping point for me. Once I had all of this knowledge, I believed in my girl and jumped all in.
For Jonny and I, our story has always been about how we can use our resources to give Jaxlee EVERY opportunity to THRIVE. She’s got her own physical obstacles. She has challenges in how she navigates a world that is designed just for typically-developing kids. So for us, we are passionate about providing HER with the skills so that she can feel her own strength and independence.
And let me tell you, it’s working. Whether it’s reading a book or climbing up a ladder, that girl has risen to every challenge.
As special needs parents, we carry SO much worry around our kids. But with programs like AAC, I am convinced that our load can be a little bit lighter. I encourage you to check them out. This October our particular program is offering 50% off their app. Reach out if you have any questions!!
This October our particular program is offering 50% off their app. Reach out if you have any questions!!