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Back story

There’s no such thing as too old.

July 22, 2014 by Mary Leave a Comment

We experienced every possible reason, no, I need to say, every possible excuse as to why our daughter could not use a high-tech AAC device. Today’s post by Speak for yourself sounds like our story. What I want to emphasize is “your child is never too old to learn”.  You may have to change their way of thinking. You will have to change your way of thinking too.

During the seizure years, Jess learned at a very slow rate. It was very difficult to watch her peers reach milestones, much less watch younger children do all the things she couldn’t with ease. [Read more…] about There’s no such thing as too old.

Filed Under: Back story, Blog

SFY: the first two weeks

July 20, 2014 by Mary Leave a Comment

Getting the iPad was the first step. Deciding on the App Speak for Yourself was a no brainer. The learning process never ends.

February, 2012,

The first week we had the iPad, it was obvious that the physical set up was not working. Jess was not having much success with the iPad when it lay flat.  She needed a stand and one that didn’t require too many steps to set up.

I learned even more the morning the iPad didn’t make it into her backpack for school. There is nothing more informative than showing up when least expected. It was at this time, I saw that not only did we need a stand, but the para didn’t know how to turn the iPad on, much less put it in guided access (which prevents Jess from leaving the program or her from re-programming). Now I’m starting to panic. We have been down this road before.  It does not work to have someone teach language* when they themselves are learning as they go. [Read more…] about SFY: the first two weeks

Filed Under: Back story

And then there were the seizures

July 20, 2014 by Mary

1993 –

When Jess was 18 months, I saw her first seizure. It lasted for 5-10 seconds, her body stiffened. When I asked our neurologist if this were a seizure, she dismissed me and said I didn’t know enough to diagnose. Much later, I learned that these were tonic seizures. When Jess was in her late twos, everyone thought she was falling down because of her ataxic gait, but what we were seeing were atonic seizures. We were also daily witnessing absance seizures.

Absance seizure, hepped up on Depakote Fall, 1995
Absance seizure,  Fall, 1994, before she was diagnosed with epilepsy.

I did express my concerns with our neurologist about what I was seeing, however, at this time, with this doctor, it isn’t a seizure until the doctor sees the event or records it on on EEG. [Read more…] about And then there were the seizures

Filed Under: Back story

Getting school on board

July 17, 2014 by Mary Leave a Comment

December 27, 2012

Immediately after our session with Heidi, I contacted our school case worker. She was very supportive. The school wanted a presentation before they would make a decision. After it was approved, we then had to wait for school to figure out how to get an iTunes account so they could purchase the SFY App.  I guess, up until this time, school had only used dedicated devices. We were the first in our school system to use an App. While this was in process, school scheduled a group training (which included other parents) on SFY  This was held on January 28, 2013. However, it wasn’t until Friday, February 5th that we got the iPad in our hands.

We were excited beyond words to get started!  No pun intended, ha ha… Jess explored her new voice. During that first hour of exploring, I stepped away to let the dog in, and within that split second, Jess had deleted the SFY app! In a panic, called Heidi. She was able to walk me through how to reinstall from the cloud (thank goodness).  This was when I learned about the invaluable feature guided access. [Read more…] about Getting school on board

Filed Under: Back story

Speak for Yourself; our intro

July 17, 2014 by Mary 2 Comments

December 27, 2012

At 9am, Heidi came to our home to introduce an AAC App that she (and her partner Renee) developed for the IPad called Speak for Yourself (SFY). I nearly cancelled the appointment.  The buttons on the screen seemed too small. Jess’s fine motor skills were too poor. Besides, when she had been evaluated, it was concluded that an iPad would be too difficult for Jess to use or understand. I knew the comprehension was not an issue, but was concerned about other factors that would impede her from using this device.

Heidi arrived with an armful of iPads in two different sizes. One was dedicated to SFY and another had SFY and App games. Jess was all over them both. She immediately started to problem solve and see how they worked.

At one point during the meeting, Heidi and I were talking and Jess opened the babble feature. This is where you can open the screen up to show 120 available words at once. Using SFY, Jess said “exceptional” and then looked at me.  I stopped talking to Heidi, turned to Jess and said “yes, you are exceptional!”.  Jess found this word a few more times during our session. I was encouraged. Heidi shared with me later that this was when she knew Jess could find success using SFY.

Now we just had to get school on board.

 

 

Filed Under: Back story

Going rogue; how we found SFY

July 15, 2014 by Mary

Beginning …..January 2011

The end of May, we decided not to replace the Dynavox. It was temperamental and their updated version was more difficult to program. To top it off, we could not afford to support it when Jess aged out of school. We could not afford to buy a $9,000 device every four years either. Because the Dynavox wasn’t user-friendly, Jess realized it was easier for her to use gestures. For us, the underlining problem with the Dynavox was when Jess had more to say, she had to navigate through too many layers, it got complicated.  She lost interest.

The Dynavox. This was taken when she first got the device. Notice hand over hand, this is so wrong

Back in January, Jess had been evaluated for other AAC devices. They said no to PQ2G and  I don’t recall what they suggested, but they definitely did not recommend using an iPad due to her poor fine motor skills,  and her distractibility.  Even so, the only thing I had seen at this point was Proloquo2go.  Something about it seemed not appropriate for Jess who was now 20. [Read more…] about Going rogue; how we found SFY

Filed Under: Back story, Blog

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