Conversations With Molly

For the first time in her life, Molly is able to communicate using the Yes/No app. I wanted to record some conversations we have had with her. Some of these were asked in English (using words she knows) with a combination of sign language or gestures, and others were asked through translation in Telugu. We are starting with the Yes/No app and working up to using Proloquo2go, once I program it and work out some kinks. We want to transition to her using her left arm to press the Yes and her right arm to press the No (rather than right arm for both), to make it even clearer, although using her left arm is a challenge for her.

Some days she is not interested in participating, perhaps because it is challenging for her and she is tired. She is going through a bit of a stubborn phase where she has days where she really fights us when we ask her to do things; to creep to a toy, to do school, to practice sitting, to use her communication app, even to eat. When she's doing this, she stares at the ceiling and slaps the iPad randomly, or refuses to touch it at all. Quickly many people write her off when she does this, telling me she doesn't know what yes/no mean and doesn't understand how to use the app. It makes me beyond frustrated when this happens, and I am working at being patient with her and when she doesn't want to communicate, giving her that choice, but also balancing it with the consequence of she doesn't have another way to let us know what she wants. I am trying not to guess what her needs are; she needs to tell us and that is how she will get what she wants (ex. asking her if she is thirsty, rather than just giving her a drink, or asking her if she wants to go outside rather than just bringing her out).  Most of the time she loves to communicate though. Sometimes she hits the wrong button, but you can always tell right away when that happens. You can see her eye gaze on the button she wants, and she keeps moving her hand to try to touch it until she eventually does, whereas if she presses the button that she wants correctly, she will move her hand back to her lap. We have considered just using eye gaze, but she gets so distracted that touch has been more consistent. I know yes/no isn't a lot, but it's a start and this is only the beginning!

While getting ready for bedtime...
"Molly, can I sleep here (draping myself across her body and fake snoring)?" No.
"Molly, can I sleep here (using her stomach as a pillow and fake snoring)?" No.
"Molly, can I sleep here (draping myself across both her and Lily and fake snoring)?" No.
"Molly, can I sleep here (pointing to my spot on the end of the bed beside Nolan)?" Yes.

While getting ready for bed another night...
"Molly, do you want to sleep here (lying her across Lily, Nolan, Jasmine, and Cedar)? Yes (with giggles).

 

After telling her that we are going to take her and Lily to the cinema at the mall to watch a movie...
"Molly, do you want to go see a movie on a huge screen at the mall with me, Tori Akka, and Lily?" Yes.
"Molly, do you want to watch a scary movie?" Yes.
"Are you sure? Or do you want to watch a sad movie?" No.
"Do you want to watch a funny movie?" No.
 (Molly is the most sensitive of our kids... no way am I taking her to watch a scary movie, but I thought it was funny that that is what she requested!)

On school...
"Do you like learning your ABCs and going to school at home with Tori Akka and Nikki Akka?" Yes.
"Do you want to go to a real school like Lily does?" Yes, yes, yes, yes. (pressing over and over again)

What she wants to be when she grows up. I began by telling her that when we get big and finish school, we get a job. I listed 4 jobs and told her I was going to ask each 1 by 1 and she could tell me which one she wanted to be when she grows up. 
"Molly, do you want to be a cleaning lady?" No.
"Molly, do you want to be a nurse?" No.
"Molly, do you want to be an ayah?" No.
"Molly, do you want to be a teacher?" Yes.
I found that glimpse into her mind so exciting!

On her favourite foods (and healthy appetite!), following an explanation that she can only choose one of the options I was about to give her.
"Molly, is pappu your favourite food?" Yes.
"Are you sure? Isn't upma your favourite food?" Yes.
"Is mutton your favourite food?" Yes.
"Is ice cream your favourite food?" Yes.
"Mol, you are supposed to choose only one. Do you have only one favourite food?" No.
Okay then :)

When she was feeling sick...
Molly wasn't herself one day. She didn't eat lunch or dinner and when I went to work on her sitting with her, while watching a Storybots video, she cried and cried. Mol never cries like this! Sometimes she gets stubborn and refuses to sit, but she has her stubborn pout on when she does that and there aren't ever tears. I knew something was up so I got Sarah's daughter Amira to ask her in Telugu:
"Do you feel pain?" Yes.
"Is it in your stomach?" No.
"Is it in your head?" Yes.
I then thanked Amira and thanked Molly for telling us and took her upstairs to ask some more questions. Now that I knew the word for 'pain' in Telugu I pointed to various body parts and asked if she had pain, just to confirm it was her head. She continued to say no to everything but her head.
"Molly, do you want medicine?" Yes.
I gave her a bit of pain meds and her reaction was priceless. She was so excited that she had found a way to communicate what was bothering her! We cuddled in bed together and I sang to her and kissed her. To me, this is the most amazing thing about her being able to communicate. She can now tell us what she wants and needs. Our nurse was speculating that it was her stomach and we should give her something for that, but now we know. We don't have to speculate. It's awesome!!

We have also introduced yes/no wrist bands. This is the exact same concept, but they are around her wrist so they are more portable. She gives us a high five with the hand she wants to answer with. We were going to have her just lift the hand, however often when she lifts one hand, the other goes up as well, so to make it more clear, she needs to give us a high five with the hand wrapped with the band she wants to answer with. We put the "yes" band on her left arm as that is the side it is on in the yes/no app on the iPad. We took her out to the Museum recently and she got to practice with the bands in public for the first time. It was a bit rough, to be honest. She started out fine, but then it went downhill. She doesn't seem to have the concept grasped as well as with the iPad, or perhaps it is just hard for her to use her left hand so she doesn't. She was on complete sensory overload with it being her first time at the Museum and it was all just too much. She broke down. We are going to bring her back to the Museum when it is quiet (this day there was a party and it was just too noisy and busy for her). Then, we will have the opportunity to have her work with the arm bands in a less stressful environment. At this point, she is really struggling with them. I think the left hand is hard for her to stretch out, so she gets frustrated and just says "no" all the time. I am going to try a little more, as I love how portable they are, but am not sure if they will work for her.

We are really hopeful that Mol will begin to understand that these forms of communication are not meant to be stressful, but rather as a way for her to make choices and have more control. Some days she loves it, some days she hates it. We are taking it slowly and letting her set the pace.