Congenital Bilateral Perisylvian Syndrome

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Max Gets an iPad!

iPad Augmentatice Communication Device

In our quest to get Max a talking device that he’d actually use, we were contacted by Colorado’s Parent to Parent Organization (P2P) to enter into a contest by Circle K of Colorado and Cerebral Palsy of Colorado (CPCO) to win a free iPad.  We were told that there was only going to be 3 families selected to win and were encouraged to enter soon.

Of course, I jumped on this opportunity, immediately, and sent in our short blurb of why Max should get an iPad:

Our 11 year old son, Max, was born with a very rare syndrome called Congenital Bilateral Perisylvian Syndrome (CBPS).  According to the National Organization for Rare Disorders, there have been approximately 40 cases of CBPS reported in the medical literature.  Basically, CBPS is characterized by paralysis of the lower face (for Max, it’s his entire mouth region – tongue, lips, cheeks, throat, chin, etc.).  Because of Max’s CBPS his speech is very, very limited (when he talks, he sounds like he is deaf and it is normally very hard to understand him), which is why he would benefit greatly from an augmentative communication device, especially one like the iPad.  The benefit of the iPad over other devices is that it is capable of word processing, is very portable and has a clear voice (it’s important to Max that any device has a normal sounding voice, and not a robotic one, because the voice will be representing who he is), in addition to relaying text to speech (via apps).

I’m not sure if “contest” is truly the word to use, but essentially 15 families were contacted that had shown past interest (or talked about) needing an iPad for their child.  Out of these 15 families, 3 were chosen to receive the iPad.  We were chosen as one of those 15 families because I had reached out on P2P to get in touch with other parents whose children used iPads – I wanted to see how well their children responded with the device (especially before I bought one for Max).

Anyhow, we submitted our entry and waited.  And waited.  And waited.

It actually was only a couple of weeks, but it felt like forever.

Thanks Tom & Dale

When I first found out about being nominated, I tried calling everyone I knew so that I could share the news, but no one was available – I was busting at the seams to tell someone. The first person I saw was for sure going to be the first person to hear the news, and that person was my boss, Tom Whittaker.  I told him the story of what was going on, and of course I was bubbling over with joy.

A couple of days later at an employee outing, he came up to me and asked me about the progress of the contest.  I told him that I hadn’t heard anything yet, but I didn’t know if we would qualify because Max didn’t have cerebral palsy and the CPCO was the organization participating in the contest.

Tom then told me, “Well, if Max doesn’t get it, we’ll get it for him (he meant him and his partner would get it).”  I was so excited that I instantly jumped up and gave him a big hug (this to a guy that despises hugs… that may be a strong word, but you get the point).

I called my husband and told him of the latest news, and of course told Max that either way he was going to get that iPad.  Max was ecstatic!

Now we just had to sit and wait to hear back from P2P.

Max Finally Gets an iPad!

About a week later, we finally received the news – Max won the iPad!  But it was even better than that.   Because so many of you donated your loose change to those money jars at the register at Circle K, they were able to giveaway not 3 iPads, but 5!  Woohoo!

There are now 5 little one’s out there that have the device they need to be able to communicate better… I’m seriously so amazed at this!

We picked up the iPad directly from CPCO where it came loaded with apps to help Max communicate, and free technical assistance if there are any issues in the future with the device.  I got to meet the President of CPCO and the Human Resource Director, and was pleased to share our joy for their kindness; in fact, I hugged each of them, and could tell that they were grateful to be donating the device.

It was a long, 2-hour drive home before I finally got to hand Max his iPad, but the look on his face was priceless – he was smiling ear-to-ear.

Setting Goals for the iPad

But we learned our lesson with past devices, and we didn’t want this one to turn into another dust-collecting augmentative communication device.  So the school came up with a spectacular idea to set goals for him that encouraged him to use the iPad.  He had to use the iPad at least 4 times a day and document when he used it (basic documentation, nothing hard), and if, by the end of 2-weeks, he used the iPad at least 4 times per day, he would get to get a special treat for him and one of his friends.

And it’s worked!  In the first 2-weeks Max and his friend got chili-cheese fries for lunch – yummo – and thereafter, he got rewards similar to this.  It truly helped him not only learn to use the iPad, but encouraged him to do so.

At home, we make it a point to have him use the iPad when we don’t clearly understand him; of course, this is limited use, because we pretty much understand everything that he says, but there are other goals we set where he is encouraged to use the device:

  • When we go to restaurants, he has to order his own food with the iPad.
  • When we go to the library, or somewhere else public, he has to use his iPad to ask a question or communicate if someone doesn’t understand him.

So far, so good, Max is using the iPad in public situations where he once felt uncomfortable to communicate – easy things too, like ordering his own food off the menu.  We are lovin’ the iPad, thanks to Parent to Parent of Colorado, Circle K Colorado, Cerebral Palsy of Colorado (CPCO) and the general public!

A Little About Circle K

Circle K continues a tradition of support that began in 1984, when The Circle K Corporation purchased the Utotem chain of convenience stores. After the acquisition, Circle K management adopted United Cerebral Palsy (UCP) as the company’s designated charity. In 1997, Circle K was named UCP’s largest corporate sponsor and to date, they have raised more than $38 million through coin collection canisters in every retail site and at special events.

To find a store near you, go to http://www.circlek.com/CircleK/FindAStore.aspx. Store Managers are recognized for the contributions that come into their store (that’s donations by you!).  Make a Manager’s day by dropping in, saying how much you appreciate Circle K and their support of people with disabilities… and maybe even drop a few coins.

6 Comments

  1. Our son is three and uses Proloquo2Go like a champ. I love how “customizable” it is. Any of the other AAC devices that we have tried have been challenging to say the least for setting up for all the different scenarios. Now, if I can get some training for his classroom teacher and get her on board with something new.

  2. We live in Colorado and the school speech therapist, along with the Colorado Board of education (BOCES, http://www.coloradoboces.org/), work together to incorporate the use of the iPAD (and other aug com devices) into Max’s everyday school activities. During our IEPs we sit down with the entire team, including Max’s teacher to see set goals for him, and the teacher gets excited to do the same.

    I know your son is still young, but once he hits elementary school, the school should work with you and him to come with his own IEP that incorporates his aug com into the classroom.

  3. Also, when Max was younger, Children’s Hospital Colorado had a program (http://www.childrenscolorado.org/conditions/speech/index.aspx) that would help teach him how to use his aug com. See if your local hospital has a program like that.

    Or, see if you can join a Parent 2 Parent organization in your state to find other parents whose children use aug com devices… you could have a play date!

  4. Hi my daughter has CPBS and we live in the UK. She uses a IPAD at school and home

  5. @Cindy, how is it working out for her? How old is she?

  6. Hello I just found out my son who just turned three has the same thing. He was misdiagnosed from 4 mon until now.

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