When our now 3 ½ year old daughter Lily was diagnosed with Rett Syndrome in October 2017, I remember feeling really helpless because there seemed to be so little we could control or do to help her.  For me, the one area where I felt I could make a difference (which probably saved my sanity) was communication.  Lily got to try a Tobii at the LA Rett Clinic shortly after turning two, and that was the first time I think we fully realized our pre-regression girl was still in there.  Long story short, we got her an Eye Gaze Mini and a Surface Pro with Communicator 5, as soon as possible. I was lucky enough to almost immediately stumble upon Rett University and the amazing Susan Norwell, while desperately trying to figure out how to best help Lily learn and use this new language.  It’s been a roller coaster year since then – turns out trying to teach a toddler with apraxia a language you don’t know yourself isn’t the easiest thing. Also, since Lily is to some extent ambulatory, it has also been challenging to figure out how to have her device accessible in situations where we are not at home and/or sitting at a table.

A couple of months ago, we got Lily a wagon that fits both her (in a Child Rite seat) and the Tobii (she now has an I12). All of a sudden she could have the device with her when we go places like the park or the zoo – and, maybe not surprisingly, it turns out having the ability to talk about things in real time and to, perhaps, more interesting people than her “boring parents” have made a world of difference.

A little while ago, the greatest thing happened. We brought the wagon with Lily and her Tobii to our dog park and she made a new friend all by herself-by talking to him.  He was one of those kids who just “gets it” and was willing to interact with Lily even with the differences. He kept asking Lily questions (and modeling), and she responded to his questions with a much higher frequency of success than I’ve ever seen.  Guess something to talk about and a cute, older boy as motivation really helps.  They would talk a bit and then she would start saying things like “walk”, “outside” and throw back her head and clearly indicate that she wanted to get out of the wagon to move around.  So we would do that for a little while, until her new friend Liam would come up and ask Lily if she wanted to talk some more-which was met with a big “yes” smile.  We would then take her back to the wagon, they would talk some more, and then continue going back and forth between playing out of the wagon and talking in the wagon for a good hour or so.  Numerous times I heard him go back to his mom and tell her about things that Lily told him (“Lily said I’m her friend”, “Lily says she likes dogs”).  It was so great to see her have her own conversation totally unprompted.

That wasn’t even the best part – afterwards I overheard two of our friends talk about it and one of them, who is a computer guy, said to the other that he could totally see Lily programming robotics or something “with that thing” and added “she is so smart!”.  These are people who have known her for her whole life that have always been really supportive, but it was amazing to see how they saw her in a different light after hearing her communicate.  It really brings home how important it is to give our girls and boys access to their voice, especially in environments where they have something they want to communicate about. I think we sometimes assume people will know how smart our children are, just because we do, but if you’re around a non-verbal person occasionally, it is probably really hard to know what to think.  Seeing Lily determined and intent on getting her message out was a game changer for our friends.

Access might be the hardest thing when it comes to AAC, but also the most important. Having someone interesting to talk to and experiences to talk about is what makes communication worthwhile, and that’s no different for non-verbal kids.  By giving our kids the opportunity to participate and share their thoughts with other people, we can change the way they are perceived and hopefully the way they are accepted and included in everyday life.

Written by Malin Delling, Rett Mom and Warrior from California!