From the Eyes of a Parent: The START Program (PRT)
Lucas is nine-years-old this year! He was diagnosed with down syndrome at birth and we later noticed other challenges, like major difficulty with speech, spinning, rocking, some sensory oddities, etc. He was soon diagnosed with ASD.
[Since he was born], we researched and looked for help for him. Some things helped him, other things didn’t so much. We felt so disconnected from him in so many ways. I often thought, “If only he could tell me how he’s feeling and what he’s thinking right now.” It was a lot of guesswork for us. I was patient and encouraged him, but I didn’t know how to actually get him to speak.
We started services with the Centre in April 2018 and soon after that we were accepted to the Centre’s START Program (PRT Parent Coaching). We were aware that it was a commitment, but we were ready for the work because it had been so hard to see Lucas struggling to connect with us verbally. We learned so much. It was exactly what Lucas needed.
Lucas is in a different place now with his speech: he says words all throughout the day, he’s more confident and it’s so great to hear his voice! He’s not just scripting, he’s saying meaningful words that help him get what he needs and help him connect with us. We also worked to extend the PRT strategies we learned to other daily activities: feeding, bathing, dressing and anything that motivates him. It’s still difficult for him to say two words or sentences, but this is one of the next steps [we’ll work on] with the PRT follow-up when Lucas is ready.
The START Program was fundamental for us in understanding what helps Lucas speak. He’s more engaged now with all of us and I feel like I finally know how his mind works! My favorite thing is to ask him is: “Lucas, what do you want?” and he tells us in one or two words. That’s so much better than seeing him upset and trying to guess what might be going though his head.
We’re thankful that there is also a PRT follow-up to help us continue to expand what we learned in the program, keep focused and help us when we get stuck. We’ll continue with these skills as fast as Lucas can take it, because we’re definitely going steadily in the right direction with less frustration and more motivation for him.
I think PRT skills should be taught in every school and every group working with children who have difficulty talking. I know there are other speech programs that I am sure have their merits, but I find that PRT is organized, gentle and efficient on kids and parents because it’s based on motivation: it starts with play and then, once that initial speech barrier is passed and the child starts talking, it can be expanded to any other daily activities.
The Specialized Services team at the Centre has been very helpful. I like being involved in my son’s life and being able to help him, but obviously there are things that I don’t know or that are difficult for me, but I didn’t feel judged by the team. Rather, I felt supported all along. They were very prepared and flexible in helping Lucas. Sometimes I felt like I needed to apologize for some of his behaviors, but what I heard from them was: “Lucas is awesome!”
Interactions with people at the Centre make me feel they are seeing Lucas as a child like any other. He is our awesome kid and he will continue to improve even though life can sometimes be very hard for him.
I think we as parents can look at autism like a mountain: if we hold our child’s hand and look for the right help, we can climb it together.
– Simona, Centre Mom