Posts Tagged ‘proloquo2go’

Finding Her “Voice” (Part Two)

Another fun example of Chloe’s learning to use her Proloquo2Go communication app on her iPod:

Chloe has been asking to put up the Christmas tree since August!  She really has!  It has very literally been an almost daily conversation since August!

Each time she would ask about the tree, I would remind her that first we’d do Halloween, then we’d do Thanksgiving, then we could do the Christmas tree.

She would oftentimes grab my calendar from the fridge and carry it around and look at all the days that had to pass before Mom would agree to set up the tree.

At some point I even pointed out to her the big, huge, green thing in the garage:  the Christmas tree!  It is standing upright and has a big green canvas bag pulled up over it so that it looks nothing like a Christmas tree, but she was quite excited to see that big ol green thing every time we pulled into the garage — that is, every time we pulled in the garage since September!!

Chloe’s excitement grew as Halloween came and went.  And then as we talked about Thanksgiving approaching, she knew it was getting closer.  She would most days get my calendar and either bring it to me to talk about it or would carry it off to her room to study.  Would Thanksgiving ever come and go???

Well, Thanksgiving evening Chloe, Paul, and I drove home in the evening while the boys stayed in Salado with their grandparents.  When we were nearly home, I asked Paul if he would mind carrying in the Christmas tree for Chloe before we went to bed.  He agreed.

Chloe was so thrilled as we cleared a spot for the tree to go — the same spot she remembered the tree being in in the past.  She stood in the cleared spot and danced in circles and waved her arms while she waited patiently for us to get the tree inside.

Paul and I carried in the big huge green thing that Chloe had watched longingly for months, and then Paul did the honors of unzipping the big green bag.  As he pulled the green cover off of the tree and revealed our beautiful Christmas tree, Chloe growled with delight.  She couldn’t take her eyes off of it.

At last she got Paul’s attention and showed him her iPod.

I feel excited,” she had typed.

Paul’s Daddy heart melted, and he just about exploded with emotion.

Excited.  Excited. Excited,” she typed.

So thankful that Chloe is able to express her feelings and her thoughts with her Proloquo2Go!  Keep it up, girl!

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Finding Her “Voice” (Part One)

For those who don’t know, my nearly 10-year-old daughter, Chloe, is mostly nonverbal.  She uses some sign language, and gestures to communicate her wants and needs.  She uses some words that a few people can understand.  But for the most part, she would be considered a smart little girl with lots to say who is stuck inside her own body that won’t cooperate with her.

Chloe has had her iPod and Proloquo2Go for 2 years.  We have not been very successful with making it completely useful for Chloe.  She has gone through spurts where she uses it with some purpose, but then she doesn’t use it at all.  I could really beat myself up over it if I let myself.  It is just another area that I haven’t been as successful as I would’ve liked.  But lately Chloe is using it again — with purpose.  I wanted to tell you about a couple of examples.

A while back something happened and the individual people that we had entered into the P2G went missing — I’m guessing they were accidentally erased.  (Not the people themselves, of course!!  But their names and photos that we had entered onto the communication device were somehow erased.)  So specific people’s names weren’t in there anymore.  What was left was just the generic “mother”, “grandfather”, etc.

A few weeks ago, I sat with Chloe while we had a conversation about friends at school.  I added a few friends’ names onto the Proloquo2Go as well as some teacher names.  I also added Zippy and Elliot back in there.  But that’s all we had time for.  And then I totally forgot about going back in and adding all the other names back in.

Well, when we got to Paul’s parents’ house Wednesday night, no one was there yet so we went on in and got settled.  Chloe found her favorite play place in the bedroom by the windows and spread out all of the toys that she brought on the trip.

A while later, Paul’s mom came back to say Hi to Chloe and to me.  As is oftentimes the case, Chloe hardly even looked up from what she was doing.  At my prompting, she gave a minimal greeting to her Meme, and then she went back to what she was doing.  At least we thought she had gone back to what she was doing.

A minute later Chloe got my attention and showed me her iPod.  She had pulled up P2G and typed in the sentence, “I love you Grandmother.

She was trying to connect.  She wanted to say Hi.  She wanted to let Meme know she loved her.

Listen.  Listen to her.  Notice her!

Chloe’s message:  “Even if you can’t tell that I care, and even if you can’t tell that I love you, I do.  And here’s the proof — I said it.”

What a great use of a communication device!  Telling your loved ones how you feel about them!

Appointments

Last week was filled with appointments.  Here are the updates:

Elliot saw the urologist — you know, “the tenders doctor!” This was just a follow-up appointment from his surgery this summer to fix an undescended testicle.  The doctor was pleased and gave Elliot a quick lesson in self-exam, explaining that Elliot is at higher risk for testicular cancer since one of his was undescended.  Paul couldn’t believe the doctor would be so grim, telling a 10 year old he might get cancer.  But really the doctor handled it just fine.  It is good for Elliot to hear of the importance of self-exam from a doctor who has way more authority in those kinds of things.  Did you know that testicular cancer is the #1 cancer in males ages 14-40?  Well, now you do.

Chloe got her new AFOs. AFOs are Ankle Foot Orthosis – plastic braces for the foot and ankle.  Chloe has worn braces for years.  When she was younger, her braces were SMOs (Supra-Malleolar Orthosis) which went up mid-calf.  But now she wears braces that only go up past her ankles.  These braces help give her support and balance and are a great aid in “grounding” her — helping her realize where she is in space.  Don’t know if that makes any sense.  Anyway, she has been without AFOs for a few months because we couldn’t get a pair to work for her.  I tired of the struggle and just stopped trying.  But since she really does need the support of the AFOs, she was finally fitted for new ones.  We picked them up this week.  My first impression is that they are going to be great for her!  She seems more sturdy and solid — the “grounding” part I mentioned before.  I will put the new braces on her for an hour or two each day until she’s used to them — her skin is so sensitive, and sometimes the plastic really rubs.  But so far, so good!

Zippy went to the psychiatrist. If you remember back before Christmas she tried him on Zoloft to try to calm his anxieties, but the Zoloft wasn’t a good medicine for him.  We weaned him off of it the first week or so of December.  This week she started him on Prozac, again for the anxieties.  We are praying and crossing our fingers that this is a good medicine for him and that it will help bring some peace to our home.  (Peace has not shown her face around here very much for the last couple of months.)  She also doubled Zach’s Focalin — the medicine he takes for ADHD.  She couldn’t believe how active and distracted and crazy he was in her office.  “Well, the obvious thing is that we need to double his Focalin,” she said after watching him do a few back flips off of the table in her office.  Just kidding about the back flips.  But she was pretty surprised at his activity level.  (I always feel like doctors feel a little bit sorry for me at times like that.  It’s weird.  I don’t think it’s really pity, per se, but it’s something that I can’t quite put my finger on.  But it makes me do my nervous giggle and change the subject.)  My job for the next month is to monitor him on his new medicine, watching for ugly psych side effects, and to try to decipher if the issues we are still having with him are more ADHD (impulsiveness, etc.) or more Anxiety Disorder (anxious, worried, irrational fears).  That is a very tricky distinction.  She said with a child as complicated as Zachary that “it all gets convoluted.”  Why, yes, I would say so.

I met with Chloe’s teacher and her aide and talked about her Proloquo2Go (P2G).  They are very excited for her to use it.  But it is tricky to figure out how best to use it at school.  Chloe just wants to play with it and reprogram it, but we need to let her see that it is a useful tool – a voice– for her.  Very tricky.  The aide took it home one night and played around with it a bit.  The teacher took it home the next night and played around with it.  Then they introduced the P2G at school.  I think it went okay, but both days they used the P2G Chloe ended up completely melting down to the point that I picked her up early.  It is my guess that it was the P2G that caused great frustration to her.  Well, the P2G didn’t cause great frustration.  I think the great frustration came when the aide didn’t allow Chloe to have free-reign of the iPod Touch.  So it just goes to show that we have some training to do with Chloe, for sure.  I still have very high hopes for Chloe and her P2G, but it is a slow process integrating it into life.

And I went to the chiropractor so that she could try to fix me.  Carrying 40-pound Chloe is an amazingly difficult thing to do.  Lifting her wheelchair in and out of my van is not always an easy chore.  Sleeping in all kinds of positions and places while I stay up all night giving breathing treatments is not a kind way to treat my spine.  Etc, etc, etc.  So I go to the chiropractor, and she fixes me right up.  Love her!

Our Second Lesson

I really wish I had video’d this second lesson with Chloe and her Proloquo2Go.  It was awesome!  If you missed the video of our first lesson with her new talker, you can read it here.

I meant to have a lesson planned out very specifically, but she spotted her hot pink talker and wanted to use it.  We sat on my bed together and just explored -a little randomly- through all the menus and folders.

Chloe was reluctant to make the Proloquo2Go speak for some reason.  She would choose phrases or words, but then instead of pushing the bar to make it speak she would just erase and go on to something else.  (I think her hesitation was a result of our first lesson when the buttons were not responding to her touch.  I have since heard from several people that we need to cut out the plastic on the face of our case.)  But I tried to catch her each time and make her encourage her to push it to talk.

After we had been exploring and “talking” for several minutes, Chloe began scrolling rather intently, looking for something specific, it seemed.

From the HOME screen, she chose BASICS.

From there, she chose CHAT SPACES.

Then HOME CHAT.

Then she pushed “I LOVE YOU.”

She reached up with her little finger and growled a little bit as she pushed the bar to make it speak out loud.  “I love you,” came loud and clear from the speakers.

Chloe froze, looked me straight in the eyes, and then reached for me with a great big o hug!

That really happened!  She told me she loved me and gave me a big hug!  Wow!  Awesome!

To Talk or Not to Talk?

We have an exciting new piece of equipment.  It is called Proloquo2go.  Heard of it?

First, let me explain that Chloe, my 8-year-old nonverbal daughter has used AAC devices for years.  AAC  means Augmentative and Assistive Communication.  Basically, an AAC device is something that helps a person “talk.”  Some AAC devices are just paper with words or pictures that a person points to to communicate.  Even a slip of paper with a note scribbled on it could be considered AAC.  But most of what Chloe has used are electronic pieces with a voice output.  These devices are big, bulky, heavy, and expensive (easily $6,000).  And we have failed to be successful with any of them.  Is it because they are too bulky for Chloe to carry around?  Is it because she hasn’t found them useful?  Is it because it is complicated to push all the right buttons to make a simple request when signing or gesturing or just doing without is easier?  Is it because Chloe views anything electronic as “a toy?”  I think it’s a combination of all of those things.  But she still has the need for a communication device so I periodically research them on the internet.

A week or so before Christmas, I came across this blog entry at Terrible Palsy, a blog that I follow.   It really made me curious.  Here was a device that was small, affordable, lightweight, and practical.  Would it be a good fit for Chloe?

I found the Proloquo2go website and got even more excited.  There are training videos that made it look so easy and promising.  We found some youtube videos about it.  We just got more and more excited about it.

Proloquo2go is an application that you download onto your iPhone or your iPod Touch.  It has all the functionality that the big, expensive machines have.  Easy and cheap!  Sounds promising!

So a couple of days before Christmas, Paul bought an iPod Touch for $200.  That same day, Paul downloaded Proloquo2go from iTunes for $187.  We also bought a case — hot pink, of course — with external speakers and a carrying strap online for $15.  And we were in business!  For only $400 we had a working little “talker.”  Amazing.  I am so excited about it!  I am hopeful that it will be good for Chloe!

It came loaded with lots of words, vocabulary, sentences, and phrases.  I have messed with it, programmed it, and changed it, trying to make it more useful for Chloe.  It still needs some more work, but I will need to spend some time watching the training videos to figure some of it out.

I finally introduced Chloe to the talker today.  She is very interested, of course.  She loved working with it.  I’m sure it just seemed like a toy to her.  But I plan to have several more training sessions with her before setting her free with it.

At today’s training session she got frustrated that the screen wouldn’t respond to her touch every time.  I’m not sure what the deal was.  Part of the deal, perhaps, was her wet fingers that kept going into her mouth while I wasn’t looking.  Also, I think maybe the iPod requires more of a tap than a push?  Not sure, but hopefully with practice and with my tweaking it it will be easier for her.

Stay tuned for more updates on the Proloquo2go!  Here’s a video I took of our first training session:

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