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Tuesday, July 10, 2018

Happy Independence Day!

We just celebrated the 4th of July---Independence Day.  Independence is what most people with disabilities struggle to achieve every day.  It's probably the most common word used in an IEP, "Johnny will independently blah blah blah."  Technology is key in achieving independence but technology isn't just high tech computers and expensive equipment.  My daughter is moving to a new apartment after being in the same place for 3 years.  We had pretty much figured out what she needed to be as independent as possible in her living space.  Most of her equipment will move with her as will one of the two roommates who share the overnight attendant responsibilities.  We are welcoming a new roommate this year too! One of the least expensive but most helpful pieces of equipment is her balance poles which she uses next to her bed and toilet to help with transfers.  The shower at her new apartment is not as accommodating as her old one but we have a sliding transfer seat that she has used in different environments in the past that we have dragged out of the attic to bring to her new apartment. There is a handheld shower head but it needs a longer cord.  We have a few of those in our equipment stash too.  We also have a personal bidet that I got from Groupon ($24.99)  that has
become THE favorite thing to help with personal care.  
We will be meeting with an Independent Living Specialist from Vocational Rehabilitation to talk about the front door.  In her old apartment, Kay had a button on her chair and next to her bed to operate a door opener on the door.   At her new place, the door opens directly to the outside and uses an old fashioned key versus a key fob.  We will see what kind of solution they come up with for her.  All her computer and AAC equipment sets up the same no matter where she is. 
Now, where to put the trash can and park her wheelchair for charging???

Wednesday, May 30, 2018

AAC on a Rainy Day


So, what do you do on a rainy weekend?  You work on your kid’s AAC. 

The backstory is this.  Kay’s transition from her PRC ECO2 to the Accent 1400 has not been an easy one.  She uses direct select with a 144 location keyguard on WordPower.  The Accent did not even come with 144 location WordPower but she didn’t want to give up any of her “words” so we loaded the software from her ECO and got a custom keyguard made.  We also had a problem with the screen.  The ECO screen required some force to activate the keys whereas the Accent is a capacitive screen like a cell phone that just requires touch.  Kay’s palm has a huge callus from her device use that kept falling into the keyguard holes and activating the screen.  The custom keyguard we had made is actually twice as thick as the regular one to avoid this issue. 

Kay is not your typical AAC user.  She actually prefers to use her voice as long as there is a “known listener” i.e., someone who understands her and can translate CeePanese (CP talk).  However, she depends on her Accent to access her cell phone for texts and calls, drive her lap top to access the internet as well as any other computer function, and public speaking or when there is no one around to help her communicate.  At some point, it also turned her TV on for her and allowed her to change the channels but that’s not working right now. 

The issue she is having is that she is not as efficient with the Accent as she was with the ECO and it is fatiguing for her to use for extended periods of time.  We have tried eye gaze and headpointing with many different systems in the past with not much luck.  She has a lot of movement in her eyes, muscles duh…  and her timing selection is always off.  I am in awe of those who can use eye gaze or headpointing systems.  It’s really hard! 

We are pursuing two different alternatives to help make access easier.  One involves taking away some vocabulary by reducing down to 84 from 144 locations.  The keyguard holes should be larger and maybe it will be easier and faster in the long run.  This requires having a new custom extra thick keyguard made ($225 kaching).  The second alternative is two switch scanning.  I am trying two Airetouch switches that require very little pressure to activate and after many different placement trials, it looks like velcroing them to her headrest might work.  I’m also looking for a version of WordPower that is efficient for scanning, i.e., space is the most used key and needs to be in the 1st quadrant of the scanning sequence not 7th.  I’ve called Saltillo, PRC, my PRC rep, AND emailed WordPower’s creator Nancy Inman. 


So, the next rainy weekend that you are looking for something to do…..


Wednesday, March 14, 2018

Stephen Hawking and AAC

Stephen Hawking has died.  While everyone is focusing on his contributions to science and how incredibly brilliant he was, I keep thinking about the technology that he relied upon to communicate that brilliance and his discoveries.  

I want to share an article that describes his equipment in hopes that it motivates someone to keep searching for the technology needed to give a child a voice.  The biggest difference between Stephen Hawking and the children we help to find a voice is that everyone expected great things from Stephen Hawking.  Everyone deserves to have their thoughts heard.  I think Stephen Hawking would agree.  Rest in Peace.  

Thursday, February 1, 2018

The 2018 Lara Jane Parker Awards Nominations Are Open

Let someone know how much his/her efforts are appreciated.

Help inspire others to make a difference in the lives of children with communication and physical challenges.  


The Lara Jane Parker Awards Program was established to provide both reward and recognition to those outstanding teachers, therapists, parents, education and health professionals and leaders who work daily to improve the lives of New Voices children. These individuals help improve their schools and their communities in ways that will allow these children to be fully included in all aspects of their daily lives.

Winners will be honored at a ceremony on Wednesday, April 25th at The Friday Center in Chapel Hill.  A $500 cash award, a special trophy, and a letter of commendation will be bestowed upon the winners at this prestigious event attended by family, peers, leaders and the community.

The deadline for nominations is March 2nd, 2018. To learn more or make a nomination visit our website: http://www.newvoicesnc.org/

Questions - email  Pat@NewVoicesNC.org or call 919-659-5961.

Monday, January 8, 2018

A Message from our Fall Intern - Caleb Bartholomew

                Throughout high school, I worked with nonprofit that paired teens in the program with children with disabilities, who we call buddies, for a year-long (or sometime two-year-long) journey together through adventure and the arts. From my three buddies — Matthew, Thomas, and Max — I truly learned that people are people are people and that everyone is deserving of love and belonging. I learned that a disability does not equal a lack of ability, but that sometimes it required a different route to get there.
Caleb Bartholomew
                When I was chosen to work with New Voices this semester I was super excited! But, if I am being honest, I was quite nervous. I did not know much about the children who New Voices served because I these were children that I had never worked with before. While my buddies from high school did have disabilities, they were not severely affected in speech or mobility; when we would hang out, it was easy to run around and communicate with each other. I wasn’t necessarily sure of how I was going to talk about my internship with other people when they asked me.
                On day one, Sandy, the executive director, gave my partner and I homework. She handed us the resources we needed to learn about New Voices, the work it does, and the children that they serve. At our next meeting, we were to be able to give an entire elevator speech for the organization.  So, I did my homework. At our second meeting, Sandy, Meredith, and I met in the lobby of Kay’s, Sandy’s daughter, apartment complex where she just came up in conversation. Meredith had met her, but I hadn’t. I learned about how Kay was graduating from NC State in December with multiple degrees and with honors, something that I plan and hope to be able to do. I thought to myself about how challenging a feat that is for everyone, let alone someone like Kay, and how amazing that is. I thought to myself about what NC State and all the communities has and will interact with would have lost if Kay’s potential had not been realized.
                While planning our Scrabble Tournament Fundraiser and sitting in on board meetings and strategic planning sessions, I really saw the passion that each of those who work with New Voices has for these children. The staff and the board worked tirelessly to ensure that the opportunity for and right to an education that works for New Voices children was present in the public school system because they understand this unrealized potential that I, myself, did not fully understand until recently.
                I (finally) got to meet Kay and other people who work and interact with New Voices at our Scrabble Tournament! Again, I was really nervous about how I was going to go about what should I say, how should I stand, what do I do, but talking to them was really easy. Kay and I had the same small talk that I have with just about anyone else that I meet on campus — what’s your major, do you like this professor, when do you graduate — and it was just cool! She did test me on elevator speech, though, which I can say I think I did a pretty good job. It was interesting to me to see myself learn what I had “already” learned again, how people are people are people, how we all deserve love and belonging (and access to an education that works for us), and how disability does not equal a lack of ability, but that sometimes it requires a different route to get there.
       I am incredibly grateful to have been able to work with New Voices this semester. The staff and board are extremely dedicated to what they do, and it is inspiring! I am excited to live in a world where there are those who are working to create a better and more inclusive education system that works for everyone because without them and without New Voices children, we would all be missing out.

Friday, December 1, 2017

#MyGivingStory @ https://goo.gl/7371V8

***PLEASE VOTE DAILY UNTIL 12/8 AND SHARE ***

My daughter is 22 years old and graduating December 15th from North Carolina State University, Summa Cum Laude. She lives in an off campus apartment and belongs to a sorority. Her dad and I are very proud of her. Sounds pretty typical for a college student, right? 

What you don't know from my description is that she has spastic quadriplegic cerebral palsy and cannot walk, talk, feed or dress herself, or even go to the bathroom by herself. She uses a power wheelchair and augmentative communication device to speak. She has personal care attendants to help her with her daily living activities. 

When she was born, I spent a lot of time asking myself, "why me?" When your child is born with a disability you lose the dream of the child you were expecting. Everyone thinks their child will grow up to be something special, maybe a football player, cheerleader, or maybe even president. Suddenly, your child's future is a big question mark. It's a dark and scary place to be. 

I was a manager for a fortune 500 company when my daughter was born and being a stay at home mom was not something I had envisioned for myself. However, my daughter was soon doing eight different therapy sessions a week and there wasn't really time for me to work. I felt that if I worked hard enough on her, she would be able to overcome her difficulties. Over time, the "why me," evolved into "why NOT me?" as I realized that my daughter would have the benefits of a financially secure college educated family with good health insurance and the time to devote to advocating for her to receive everything she needed. 

My daughter was included in regular classrooms despite her physical needs for additional supports. Thank goodness that computer technology was expanding by leaps and bounds at this time and she could use it to level the playing field for her scholastically. Every year was a transition and she had to prove that she belonged in regular education and could do the work if given the appropriate supports. 

I also learned very early that the best way to heal myself was to give back to my community. I have volunteered and raised money for several disability related organizations geared towards helping families of children with disabilities. I truly believe that my life's purpose is to showcase kids like my daughter and help them achieve their highest potential, whatever that may be. Luckily New Voices Foundation came along and has graciously given me a platform to do so. 

Over the past 10 years, New Voices has provided hundreds of hours of training to those who work with kids like my daughter so that they can be the very best at what they do. New Voices has also provided hundreds of thousands of dollars of equipment to our local schools systems to help them meet the needs of these very complex children. New Voices advocates for these children to ensure they get the resources they need. New Voices is literally a voice for children who have none. 

This is my giving story. Please think of my daughter at 2:00 p.m. EST on December 15th when she dons her cap and gown and rolls across the stage to accept her diploma. New Voices is working to ensure that she is not just the exception but the norm for kids like her.

Tuesday, November 7, 2017

Wise Words from Sharon Draper

Our friend and author, Sharon Draper, posted on Facebook about why she wrote Out of My Mind.  For those of you who haven't read it, it's the story about a New Voices child.  Melody is a young girl with a communication and physical disability whose potential is really underestimated.  Melody finally gets a communication system (which at the time it was written was a figment of Sharon's imagination) and Melody begins to share what she knows.  The other theme of the book is about acceptance, which is what Sharon posted about today.  Here is her post: 

"Kids with disabilities are just like their peers. They want to be accepted, to have friends, to be included in the social life of the school. Melody in "Out of My Mind" understands the pain of being ignored and overlooked. I gave her a voice to show her humanity. She represents all those young people, who have feelings as well as dreams. I wanted to give those kids, who are often treated as if they are invisible, a chance to be heard, to be seen as the individuals they are, not the machines they ride in, or the disability that defines them."

Thank you Sharon.  Here is the link to her post on her Facebook page. https://www.facebook.com/sharonmdraperofficial/

Thursday, September 21, 2017

Not Just a House but a Home

Let's face it....mom and dad are not going to live forever. It's never too soon to start thinking about the appropriate housing solution for a child who will require additional supports all their lives.

Attached is an article about a concept called co-housing. It's one of the ideas that I'm hearing about at meetings that I attend.It's exciting to see options that more closely resemble what we truly want for our kids; safety, dignity, choices, and supportive community.

https://www.indyweek.com/indyweek/how-the-triangle-became-ground-zero-in-the-cohousing-movement/Content?oid=7724948




Thursday, September 7, 2017

Communicating during an Emergency

At the State Employees' Charity Campaign kick off I was approached by someone asking if I had access to some communication boards that were specific to emergencies. I received this today from the Augmentative Communication Online Users Group @ acolug@listserv.temple.edu .  

"Given the potential for disastrous effects of hurricane Irma, the importance of communication during times of emergency is heightened.
Here is a link to downloadable free communication boards that were developed after Katrina for communicating during times of emergency. Please go to this link http://disabilities.temple.edu/aacvocabulary/e4all.shtml#index
to find the actual boards and how to use them. Please share these communication boards widely. They are in English,Spanish, and Haitian Creole.
Be prepared and be safe"  

Tuesday, August 29, 2017

Grandparenting a child with a disability? How Can You Help?

Gram Power 101

If you are a grandparent of a special needs grandchild, then this series may be just what you are looking for. Learn about the several major developmental disabilities and the many categories of exceptional children. Discuss ways to understand and help your children in working with their children with special needs. The program, structured over four sessions, organized as follows:


Four sessions: Thursdays, Oct. 5 & 12, Nov. 9 & 16. 10 am – Noon. Fee: $20
Session 1 – Children with Special Needs and their parent’s journey. The important role of Grandparents.
Session 2 – The varieties of special needs and the “Five Bumps in the Road”.
Session 3 – Different Cases – Different Places. Transition Issues and Community Living.
Session 4 – The Law, Services, Resources and Issues.

INSTRUCTOR:Dr. Don Stedman

Don Stedman is a Developmental Psychologist and UNC – Chapel Hill Emeritus Dean and Professor of Education and Child Development who has worked with children with developmental issues and their families for over 45 years. He is former Associate Director of UNC – Chapel Hill’s Frank Porter Graham Child Development Institute, former Director of the Vanderbilt /Peabody Kennedy Center for Research in Child Development at Vanderbilt University, and former Pediatric Psychologist at the Duke University Medical Center. He loves working with grandparents because he is one, too!

COURSE #3512

Link for more information

and to register:

Happy Independence Day!

We just celebrated the 4th of July---Independence Day.  Independence is what most people with disabilities struggle to achieve every day.  I...