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Posted By Mack

Alamo
{My sister at the Alamo}


Just returned from a Spring Break vacation to San Antonio Texas.  Keni did excellent on the road trip.

We all really enjoyed the visits with good friends.

Caverns

{Daddy & I in Carlsbad Caverns, New Mexico}

We are planning to send Keni to a "Talking with Technology" camp this summer.  It is a week-long sleepover camp run through the Denver Children's Hospital.  It trains and encourages the use of augmentative communication devices.  It will be a good opportunity for Keni.  The only issue is that parents are not allowed - given our serious trust issues this is very difficult for us.  We decided to send an aide that is like family to us (we luv u Amy).  It will be a very difficult week for me, but I am excited for Keni.

Roswell

{Me - Roswell, New Mexico}

 
1 Comment(s):
Diane Rehner said...
Hello to Keni and family. I found your site in that weird way of the cyber world, researching an augmentative speech therapist. Who knows how many turns were made before I was reading your page? Anyway, I wanted to say something from "a future" A long time ago my healthy daughter reacted badly to an immunization. She went from supporting her own weight at 5 months, 95th percentile in the way they assess babies-to the rest of her life. It takes a while for the label of "non-verbal quadriplegic" to sink in, but we have found it to be the beginning of a wonderful experience. Not every day. But really MOST of them. That has been a lot of days because Hannah is now 34 years old. She worked hard, graduated from high school, and has been volunteering and improving her communication skills ever since. She currently uses a Dynavox (which is hooked up to a blink switch) to speak to the world. Hannah is also in a 7 year relationship with her boyfriend, is eager to use her adapted knitting machine, and at this point is checking into alternative speech devices. If any member of Keni's family feels a question coming on, please email back. It is a long story and only parts will apply. Clearly, Keni is a lucky one with a family behind her. Sometimes comparing notes with another family is useful. If the learning curve can be shortened, great. When Hannah was little, technology had not caught up to her level of disability. The switches were erratic and frustrating. Once they were "perfected" Hannah still needed convincing. She had a perfectly good world working without speech and the responsibilities that go with it. Other steps happened before she GOT the reason to use all that effort to talk. She knows it now. All of us have learned a lot. Does Keni use a PRC device? How does she access it? I hope you want to at least check in. There are things we could share. Diane
4-Apr-2010 18:05:13
 
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