Wednesday, September 9, 2015

"Clever" Lu

Back in July we had the opportunity to spend the whole day with the one and only Linda Burkhart! It was so much fun, and so helpful! Linda had many great ideas for how to help Lu obtain more stability for communicating more effectively and for many other tasks throughout the day. It has made a huge difference. One of the most surprising and helpful ideas Linda showed us was a grab-bar being placed on the tray to Lucy's wheelchair for her to hold onto...and she does! I couldn't believe it! It greatly improves her ability to use her head more efficiently for indicating yes and no when using her PODD books, but it has also made great improvements for when she is eating. Lucy doesn't really hold onto anything consistently so I was extremely skeptical when Linda put the bar on her tray, but I didn't say anything and within minutes Lucy was grabbing onto it! Having her arm braces on is the key to her being able to hold the bar and then that all helps her be more stable.

So increased stability has made a huge difference in Lucy's life! But another suggestion Linda made has also drastically changed how Lucy communicates. For the past year and a half that Lu has had her Tobii and used the Grid2 software for her PODD, each word that she chooses goes up into her "message window" and is spoken out loud. Right beside the message window is a button for Lucy to speak her entire message all at once when she is ready, but in the meantime we have always heard every single word she chose. Linda said Lucy was ready for the settings to be changed so that each word was no longer spoken when she chooses it, and we only hear what she wants to say when she has completed a message and chooses to speak it. Lucy's speech therapist and I immediately agreed that Lu was ready for that, but I knew it was going to be hard for me to not hear every single thing she says all day...and I was right! 

The idea is that Lucy will form her own thoughts and edit as she goes by deleting words or clearing whole messages without speaking them, and when she is ready for a message to be heard she will speak it out loud. This way we know for sure she intended for it to be heard. Luckily, Lu has been using the speak message button all along so she did not have to learn about how or when to use that, but it did take some time for her to learn this new process. I did my best to remain calm on the outside, but honestly I was so anxious and un-Zen on the inside! It was hard to not just shout, "Speak your message! I need to hear you! I need to know you understand this new way!" But I didn't shout any of those things. Admittedly, I said, "Don't forget to speak your message when you're ready" an excessive amount of times in the beginning, and I still say it now, but just as a reminder, not over and over. However, she started to get it, and she has been continuing to get better and better at speaking her messages that she really wants us to hear, and clearing long strings of words that are just exploring because she knows that those are not clear messages and she doesn't care if we hear them. 

One of the first clear messages that Lucy created and then spoke out loud to us was this one:

Chad was already home from work that day, so naturally he stopped and got Lu a strawberry milkshake on his way home the next day. She was thrilled! 

A few days later Lu spoke this message while at lunch: "grumpy, hospital, constipation" I reminded her that she had been very regular recently and I didn't think she was constipated. We finished lunch and went over to have a drink on the couch. She started tooting and so I took her back to the potty where she proceeded to have a very healthy movement! I thanked her for telling me she had to go, and apologized for not taking her right away. We talked about how to say "I have to poop" instead of using "constipation", and then we talked about when we do and do not need to go to the hospital. I asked her if she really thought she needed to go to the hospital because she had to poop and she said "yes" and then started giggling! 

While we were eating lunch at the Carnegie Science Center this weekend, the day before the Strollathon, Lucy spoke this message to Chad and I: "why, where, what's happening, tell me yes or no, doctor, hospital, cut?" We had been telling Lu about the Strollathon and this little trip for at least a month, but she is so used to long car rides to cities ending in at least a doctor's appointment, if not some unpleasant procedure that she was asking if that was going to happen. We assured her that no this trip was just for fun, no doctors, hospitals, or cuts. She cleared her message and responded to our assurances by saying this:

Chad and I were so glad that she was able to share those worries with us, and that we could then help her to feel better. It makes me sad that she was worried of course, but so proud of her for not only creating such an important message, but also speaking it even though we were in a noisy room with lots of other people around. 

The final message I want to share happened a few nights ago at supper. Lu was very vocally expressing that she was upset about something, (meaning she was shouting and whining loudly). I asked Lucy to use her Tobii and her words to tell us what was wrong. I scaffolded to "something's wrong" and Lu said, "bad". She then navigated back to the beginning of her PODD but then did not say anything else for several minutes. Since she was still clearly very upset, I scaffolded to "I want" and asked her to tell her dad and I what she wants, what would make her feel better. First she said, "Barbies" and then she said, "chew". We have started giving Lu a lot of purées again because her mouth was just not chewing well for her anymore and she has been gobbling them down with relief written all over her face. She was also having a purée at this meal. I then used a new technique that Linda taught me where I could help Lucy decide if her message needed editing. I wrote out her whole message and then asked her if each word was an "oops" and this was the result:

I got her some softer cheese out of the fridge and she ate it all up...she just wanted to chew. Chad and I talked to her about why we have been giving her purées lately, and of course she understands.  It's her mouth after all that is not working, she knows it better than anyone. We talked about how frustrated she must feel sometimes and that when she would rather chew she could let us know, like she just did, and that we will always keep trying to help her keep chewing. 

So this new way for Lu to use her Tobii is different, and she is improving a little bit at a time, but it gives her so much wonderful control and power. She doesn't have to listen to people babbling on about each and every word she says, and she can choose what she wants to say, when she's ready to say it. It's a great step forward in her communication journey and we are so grateful to Linda for showing us it was time to take that step. 

1 comment:

  1. I am an OT in a school system in Maine and I work with a girl with Rett Syndrome. Our team is focusing our staff development on increasing functional communication. She is in the process of getting a Tobii and we are trying to make a grab bar for her tray. We love the picture of Lu with her grab bar! Can you explain how you attached it to her tray? If possible can you e-mail me more information about the grab bar and how you attached it at Thank you! ~ Stephanie