Talk To Me
A huge hurdle in Maddie’s life is communication. While Nicole and I are trying our hardest to be her biggest advocates, Maddie needs to have a voice as well. We’ve commented in the past about our hopes with Maddie. We’re hoping she says at least five words. This doesn’t mean that she can’t communicate in other ways. They call this Augmentative and Alternative Communication or AAC for short.
The first thing we did with Maddie is we started to teach her sign language. Since both my mom and dad are deaf, we had a little bit of a leg up in this department. Currently Maddie knows three signs. They are centered around her eating. The three signs are more, drink, and all done. Maddie picked these up quickly.
We would first introduce these signs by making the sign, and giving her the corresponding item. For example, we would sign for a drink, and then give her a drink of water. The hardest sign for Maddie to pick up was all done. The sign requires you to put both hands over your head and rotate the wrists. Since Maddie has a hard time controlling her hand and arm movements, it’s a bit difficult.
One day while Nicole was at work I put Maddie into her high chair. After two bites, Maddie made the sign for all done. I had a choice to make at this point. Either I could ignore the sign or I could reinforce what we had been working on. True to form, I picked Maddie up. In a sign that she knew exactly what she was doing, she started to laugh uncontrollably. Not only was she getting out of dinner, she had to mock me as well.
Another form of communication is using pictures. Nicole made a board with common pictures that Maddie uses in her everyday life. Before we go to do something, we tap on that specific picture. There’s a picture of her swing, her water, a bottle, her pacifier, and various other things. We also have an accompanying flip book with the same exact pictures. At times Maddie taps on the pictures, sometimes she uses her eyes, and other times she puts her whole mouth on the picture.
Lastly, there are various technological devices and programs that Maddie can use. An Ipad seems to be the most common. Obviously with her age, we have not gone down this path yet. At the Angelman Syndrome Foundation Family Conference and Research Symposium, all of the program developers will be there for a hands-on demonstration. Nicole and I are excited to get our hands on the technology as well as seeing how Madelynn reacts to certain programs.
We’re not sure if Maddie has said her first word. One evening just before Maddie’s bedtime routine, Maddie was having a melt down. She first turned to me, and I just shook my head and said “No no no.” Then Maddie turned to Nicole and in a clear voice, yelled “MOM!” She hasn’t repeated this in front of us again. She’ll babble and laugh, but no distinct words form. That’s okay, she has other ways to communicate with us. Like everything she does, she just does it in her own way.
-Written by Adam Birchmeier
