I wanted to share some of the things that Amelia is doing in therapy. I will attempt highlight each of the three main therapies Amelia participates in (speech, physical therapy and occupational therapy). Let's start with SPEECH:
In speech, Amelia's therapist Carrie has been working diligently for the last year+ to develop a communication strategy. We all know that there is a lot going on in Amelia's head, the problem is accessing it. Things are limited because she has minimal movement in her body and she vocalizes very little. We started with using switches to play and learn cause and effect in St. Louis. We have tried different locations (hands and head) for Amelia to access the switches and have found that she is accurate with both! It is sort of an art though, due to her limited movement the switches have to be placed "just so" in order for her to be able to push them. We are working on ways to make it easier for anybody to set up the switches for her (this will be really important when she starts pre-school).
In this video Amelia is using the switch to activate the music box. The DynaVox sits in front of her (upper left of screen). The switch near her head (her left side) is what she uses to make choices with the DynaVox.
It is amazing how God has worked to bring the right people into our lives...Carrie shared with me last week that many Speech Therapists (SLP) don't get education in assistive technology (AT) in school like she did. She was fortunate to have a professor who is a leader in the field in AT. Other therapists have to get continuing education when they are out of school or just never learn about it. Carrie has worked very hard to give us the ability to hear Amelia's voice and her experience in AT has been invaluable. Several months ago Carrie started introducing Amelia to a DynaVox and Amelia has caught on and is showing a lot of progress with it. For now we only practice with the DynaVox at therapy (which we goto 2 times a week). However, we finally got all the paperwork in and are waiting for approval from insurance. The DynaVox is a touch screen computer that Amelia accesses with a switch. We started with one page that contained several options of toys that Amelia enjoys. On the screen is pictures of severla toys. One by one each is magnified and at the same time the computer says the name of the toy. Even though Amelia looks at the screen we think she mainly uses the auditory part to decide which toy she wants. When the toy that she wants to paly with comes up she hits her switch and the computer says "I want to play with the...." and we play with it. Amelia has graduated to two pages now, one with toys and one with several other messages like "Amelia" that says "HI, my name is Amelia" when she picks it. Another has my voice and Steves voice recorded so she can pick to hear us say hello. There is also an "all done" which she picks frequently when she is tired. We are very excited at the opportunity that this amazing device gives us all. In in we can scan pictures, have classmates record messages and so much more.
While we are waiting for our own DynaVox we are using a step-by-step at home. We use it to allow Amelia to say "hello" to visitors and to tell us "I love you". The latest thing we have started doing is putting it by her head when she is in bed so she can tell us if she needs us at nap time or in the middle of the night. She has caught on quickly and it is a HUGE relief to us knowing that Amelia can communicate with us when she needs to.
Amelia playing with her "Blues Clues" toy (right hand) and making choices with the DynaVox using the red switch at her head. You can hear the DynaVox's computerish voice talking. When we have our own we can have different more natural voices recorded and upload our own pictures.
Another aspect of Amelia's speech is how she talks with her eyes. One way she does it is we ask Amelia questions and when the answer is yes she looks at us and when it is no she looks away, she even says "i don't know" by looking in the middle. She also looks at two objects and makes choices. She picks out her clothing in this way. Amelia's physical therapist Chrissy can get her to answer probably 90% of the time. We get her to answer 50-60% of the time. As we get more consistent with asking and listening (which is a key component) she is trusting us more and answering more. She does show her stubborn three year old self frequently by protesting and not communicating or participating.
I hope this post helps to explain some of Amelia's progress. If you have any questions as always either post a comment or e-mail me a question. It is a lot of information and is difficult to explain in words so I am not sure I did a very thorough job.
Hope you are all well and enjoyed the Thanksgiving holiday. I know we did.
Jen
hi jen! thanks for the update! i am an ruf wife and added your blog to my google reader when you posted it on the list serve. i am also a speech pathologist, so i especially enjoyed reading your post! i will affirm your slp's comments about assistive technology...you are SO BLESSED to have found an slp that knows about it!!!! after we moved to martin, before we had our first child, i worked in a school with several self-contained special education classrooms. their were MANY children there who could have benefited from AT devices but did not have them. had my time there not been so limited, i would have gone to receive more training in that area. i am so glad that amelia is being given the opportunity to communicate in that way...and it sounds like she is really having success with it! how encouraging. i look forward to meeting you at the wives' weekend in january! meredith westmoreland :)
ReplyDeleteSo encouraged by this, Jen. Helps me understand and pray more specifically for Amelia.
ReplyDeleteAmelia...it was fun to watch the videos of you at Speech....I can hardly wait until you get your very own DynaVox...I'm sure you will have even more to tell me!
ReplyDeleteHugs! Chrissy :)
Jen, I love the videos. It helps so much to see Amelia get the chance to communicate! What an incredible blessing Chrissy is. If you'd like a friend to join you some morning (and if you're allowed to), I'd love to come to PT with you. I'm amazed at how all this works and how you/we get to see Amelia's little mind at work.
ReplyDeleteJen, the whole family is beautiful! I just loved reading about what Amelia is doing these days. It sounds so amazing the kind of resources and technology available. I am so happy that you guys get to communicate in such unique and special ways with Amelia. I really appreciate the glimpse into your relationship with her! I am thankful to understand a little more clearly what your days are like and pray for you guys with a little more specificity! Miles looks so adorable too! Wish I could meet him:)
ReplyDeleteLove seeing Amelia in action in those videos! Thanks for sharing!!
ReplyDeleteJen, I am also an SLP (and an RUF wife). LOVE LOVE this post! AT is such a great tool! Amelia (and you!) are doing amazing. What a blessing your SLP is. Yay God for placing her in your lives.
ReplyDeleteWay to go, Amelia!!
Steve & Jen,
ReplyDeleteI was one of the CTS extension students Steve was mentoring when Amelia was diagnosed. Her photo has remained on the bulletin board over my desk at home and she has remained on my prayer list. I have just discovered the blog. Thank you so much for sharing about this special little girl. We are expecting grandchild #12 and I watch Amelia with grandfather eyes.
Blessings,
Mike Tant