Client Stories

In their own words, individuals and families speak about CAYA

Melissa

Melissa Yaretz, Sicamous BC,

You can’t know me by seeing me! I am inside……
I am a 19 year old woman just starting my adult life. Life has always been a struggle for me, just to survive, to thrive and to live. I have spent a life time proving myself to the world. I am still proving myself and this will never change. I graduated 2 years ago with a 4.0 grade average; this would not have been possible without a high end communication system. (I use an ECO.) It doesn’t matter how much you know if no one knows what you know. Without a communication system there would have been no grades and no proof that I am all that I am. I would have just sat in the back of the room looking cute. Cute only works for so long. Without communication, to the rest of the world I am just a woman in a wheelchair with a severe disability, who is dependent for everything. You can’t know me by seeing me! I am inside……

I am dependent for all physical tasks and care. Yes the basics can be provided without input from me but this is just sustaining life, not living it. With a great communication system I hold the reins in my life. I choose my life and the path I take every moment of every day. What I eat, when I eat, what I wear and when I wear it, the basic things all people hold the rights to. I can choose my life because I can express it. I have spent the past two years since graduation trying to achieve another extreme goal for me, my potential for independence. This too has been proven to be a struggle I must endure. Training staff to understand my level of emotional and intellectual independence is extremely difficult. I don’t think the world is ready for me, but I know I am ready for the world.

My future goals (that can only be achieved with modern technology - my ECO and computer) are basic for most people but grand for me. I plan to take courses to enhance my education in business and office management and go on to successfully run a business. I will continue to write and do public motivational speaking events. Art is my passion. I am and will be in future, a recognized accomplished artist. I will continue to grasp all of life that is in my reach - love, happiness, and fulfillment. I am not alone in this journey and others have paved part of the road before me, Stephen Hawking to name one….

What about Love? I too desire love from life and all that it can mean. How can someone love me if they don’t know me? How can they know me if they don’t understand me? To be able to communicate all my thoughts and feelings allows others to know all of me inside and out. As I desire an equal place in life, I also desire the same of love. I have met my special someone on Face Book. Yes, he is able-bodied not that it matters - but you thought it! Yes, he is my age! Though we met on Face Book which I can run on my ECO Communication system we also chat on MSN now. He has seen my picture as well through web cam, he knows my outside and he fell in love with my inside.

If everyone evaluated their life and considered living without communication they may start to understand how vitally important this is! My communication is the key that unlocks the many doors. The doors to my future and my life.

Fatemeh

Fatemeh Karimi – Vancouver BC
By Halimeh Karimi, sister of Fatemeh Karimi

Fatemeh is my 27 year old sister and she began working with CAYA in November, 2007. Our family came to Canada as refugees from Afghanistan in 2006. Fatemeh has a congenital condition which resulted in a physical disability and profound deafness. Because of Fatemeh’s hearing impairment and lack of access to hearing aids, she did not learn spoken language, and we communicated using a combination of hand and facial gestures. However, in 2007, Fatemeh suffered a permanent high level spinal cord injury and lost the ability to use her hands for communication. She received a DV4 speech generating device from CAYA, which she accesses using a switch activated by her cheek. My sister has had the DV4 throughout her recovery journey which began at Vancouver General Hospital, then took her to GF Strong rehabilitation centre, and finally to George Pearson Centre, a long term care facility.

Having the DV4 device has helped my sister immensely. With the DV4, Fatemeh is able to express her needs (e.g. that she is in pain, requesting medication) more effectively with the nurses who provide her care. When Fatemeh misses us, she uses the DV4 to request to call her family. Through the DV4, Fatemeh is also able to access a computer. Finally, with support from CAYA, Fatemeh is pursuing her life-long goal to attend school. In mid-February of this year, Fatemeh will begin attending the Deaf and Hard of Hearing Bridge from ASL to English class at Vancouver Community College, which will develop her knowledge of American Sign Language, English and literacy skills.

Thanks to CAYA’s support, Fatemeh is enjoying an improved quality of life, greater independence and the ability to pursue her educational goals. Many thanks from our family for the difference CAYA has made in Fatemeh’s life.

Andrew

With his communication device from CAYA, Andrew is now a participating member of the community in Trail BC where he works as a greeter for Walmart. When shoppers enter the Trail Walmart, Andrew is there with a smile and a greeting "Hi! Welcome to Wal-Mart. Would you like a shopping cart?"

Whitney

Whitney sent CAYA Manager, Jeff Riley, a unique letter composed with the symbols she uses to communicate using a program called, Writing with Symbols. In the letter, Whitney in her own words tells about the difference that independent communication has made to her life…

Ashleigh at ICE

A Report from the Pittsburgh Employment Conference by Ashleigh Dukoff

In 2007 I went to the Employment conference for augmented communicators. (PEC – Pittsburgh Employment Conference, www.shoutaac.org/dec2009.htm). I found the Employment conference very interesting because the speeches were mostly about people living by themselves and I live by myself in my own apartment. I found it very interesting because I got to hear different people talking about what living on their own is like for them. I didn’t know that so many people who have communication devices live on their own.

I have also been to another educational Conference called ICE. (Independence, Community and Empowerment, www.iceconference.ca) I think everyone who has a communication device should go to either the Employment conference for augmented communicators or ICE because I think they are both good for people who have communication devices to make friends who are just like them. I also think that both conferences are awesome for Caregivers because Caregivers can talk to each other.

Andrea

Andrea Paterson – Abbotsford BC
A letter from Andrea and her parents,
Esther and Paul Paterson

We were first introduced to CAYA in August 2005. It seemed too good to be true! CAYA provided a thorough assessment of our daughter Andrea’s needs to determine that the Lightwriter [communication device] was best suited for her. Through CAYA, funding was provided for the Lightwriter as well as for the specialized and creative mounting of the Lightwriter to Andrea’s power wheelchair.

CAYA has been very helpful by providing several inservice sessions to train family, day program workers, care attendants and respite staff how to maximize Andrea’s ability in using the Lightwriter. Occasionally we have needed technical support and it’s only a phone call away! Once the device had to be sent away for repair for an extended period of time and CAYA even provided a replacement Lightwriter so that Andrea could keep up with her conversations.

July 2008 marked a big change for Andrea – and us! Andrea moved to a wonderful 4 bedroom group home close to our home. This meant many new staff to train and get to know Andrea. In Andrea’s words "I use my Lightwriter to help the staff at my new group home know what I like to do, to eat, or how I am feeling. Once when I was sick I wrote ‘I want to go home." I love to have fun and to tease the staff and the Lightwriter helps me do that. I love it here!"

As parents, we are at ease knowing that no matter what situation or challenge Andrea is facing she can always make herself understood and her feelings made known. Thanks to her Lightwriter and CAYA!

Beata

Beata Scibor – Surrey BC

My name is Beata Scibor and the CAYA program is something I could not live without. My ECO [communication device] is my whole entire life. It enables me to communicate with the whole wide world! I have cousins from Poland whom I will get to know better now, thanks to the technology and support CAYA provides me with. My whole day is spent trying to communicate with my world, because I don’t talk. I don’t see myself living without CAYA. If I did not have CAYA and the support this program gives me I wouldn’t be able to do simple things that many others may take for granted such as; reading and sending e-mails, talking to my friends and family, managing my staff, or even just saying "sI love you" to my mom. I have much in my life that I am thankful for, and CAYA definitely is near the top.

Ashleigh Dukoff a CAYA client, Victoria, BC

I am 23 years old and have been using a speech device for 8 years. I purchased my Pathfinder device when I graduated. I first heard about CAYA from my friend and prior consultant, Lois. My device is working well right now. I have met with the CAYA SLP to discuss plans to continue my vocabulary building and get help to program the device.

It's awesome to have help when I get frustrated and to know that there will be someone to help me during these next few years as I work towards my independence. I hope CAYA continues.

Yours sincerely, Ashleigh Dukoff

Esther Paterson, mother of CAYA client Andrea, Abbottsford BC

My husband and I were elated to hear last August about a unique opportunity for upgrading our daughter’s communication system. CAYA seemed too good to be true. In 1999 Andrea acquired a Lightwriter through the I Can Talk Too Program (for children) at Sunnyhill. It has been well used and very much appreciated, but now we are facing repairs. In August 2005 we heard about CAYA. We feel so blessed that the timing is right for Andrea to be a part of this program. There are numerous times when Andrea is totally dependent on a communication device for people to understand her. She gets a look of desperation when she cannot maker herself understood; her frustration changes to relief when a device is used. For these reasons we wholeheartedly recommend that CAYA be funded as a continuous program. This would enable other young adults to benefit after leaving grade 12.

Sincerely, Esther Paterson

Terry and Gord Robertson, parents of Bree-Anna, Prince George BC

Our beautiful daughter Bree-Anna is 19 years old. Bree loves to talk to her family and friends about real girl stuff, going shopping at the mall, cute boys, and the latest movies. We have been able to secure funding at our local college for her and 11 other students to attend a continuing education class. They do math, language arts, history and science along with community activities and social functions. Bree uses her present communication device, a Tech Touch provided to her by CAYA, in all aspects of her daily life.

We are grateful to SET-BC for providing Bree-Anna with the ability to communicate but as you know, it only supports students up to grade 12. It was last spring when we stumbled across the information on the CAYA program on the internet and were thrilled by the idea that we may be able to have ongoing technical support for Bree’s communication device after she left the public school system. Also, to know that there was a program that would cover the prohibitive cost of purchasing an augmentative communication device relieved tremendous pressure from us financially. She finally has a true voice of her own and we are very excited to see where this wonderful opportunity will take our daughter.

We know that this worthwhile program will not only benefit our daughter but many of her friends in Prince George and around the province. Many of these young adults have benefited immensely from SETBC and augmentative communication. To lose that ability can be devastating, so we are very grateful to the visionaries who conceived of this project.

Thank you so much for this fabulous chance to truly expand Bree’s world. We believe our daughter can be a life long learner and it is our hope that her new system will provide her with the tools to express herself and truly make her own choices in her life.

Sincerely, Terry and Gord Robertson

Rachelle Pelletier caregiver for CAYA client Catherine in Vancouver

Catherine is thrilled that CAYA is expanding the vocabulary on her Dynavox and opening the door for her to communicate with more people. To be able to enhance her communication with a vast array of people is gift for Catherine.

Many thanks, Rachelle Pelletier

Robert Seline father of CAYA client Hayley in Bowser, BC

Hayley is 26 years old and has been without a voice since she left high school at age 18. (At graduation) she was very happy and expressive. When she graduated we were unable to afford to purchase her equipment. It was like graduating from mountain climbing school and having your rope cut just as you were finishing the final exam. We explored various methods of securing equipment and were unsuccessful as a result of the prohibitive costs and lack of resources.

Recently we have been working with CAYA and are in the process of giving Hayley a new voice. She is ecstatic to say the least! Hayley will have a new voice after so many years of silence only because of the efforts of those who listen and understand the needs of disabled people.

Thank-you for your efforts and generosity, Robert Seline

Garry Sigouin father, and family of Levi in Sidney BC

I would like to take this opportunity to thank you for providing Levi with his Pathfinder provided through the CAYA program.  Not only has this communication device been provided for him, but ongoing support by CAYA staff has been invaluable. Levi did have a very full life with school, friendships and family and community involvement.  Levi received his school leaving certificate after having participated in most of the school curriculum, except for Math, including two years of Spanish classes and two years of French.

All supports ended when he became an adult-even though he still has the identical needs, perhaps more so, as now he is more involved with individuals who do not understand how he communicates. In the spring of 2005, Levi's communication device,  the Liberator "died". Fortunately for Levi and us, he qualified for CAYA and has received his new "voice". I would sincerely like to thank CAYA for your commitment.  Finally, someone has recognized all people can be included and do not have to exist in isolation, and are committed to ensuring programs and supports will be provided. I can only hope those who hold the purse strings to fund this program can try to understand the importance of this program to not only the Levi's of our world, but us, the families caring for each other. Thank-you again! 

Sincerely,  Tavis, Levi, Nyleah, Penny, Garry Sigouin

Gail Gaudry mother of  CAYA client Marcel in Lillooet BC

My son had a Deltatalker for approximately 6 years; once he turned 19, we had no practical communication support at all. Marcel has had his Vantage through CAYA for only a few months but there have been very obvious improvements. The device was delivered to my home by CAYA staff and by the time they left his device was programmed with functional personal vocabulary. When (the programming of) all his personal vocabulary was lost I was able to send the device to CAYA who reprogrammed it in less than 10 days in time for our Christmas trip to Winnipeg. To say I was relieved and impressed is an understatement!

For adults with developmental delays, it seems that learning and quality of life deteriorate when they turn 19, and this is even more apparent if one loves in a rural area where supports are often nonexistent. Communication supports for non-verbal people are as important as crutches, braces, and wheelchairs are for people with physical mobility challenges. With CAYA’s support, my son will continue to learn and develop his communication skills, and have the technical support he needs. I will have assistance and support instead of feeling left “on my own”. Hopefully this program will be around for a long, long time!

Sincerely, Gail Gaudry

Maria Glaze mother of CAYA client Rebecca in Richmond BC

When my daughter finished high school, I was concerned that there were no resources to support and  further develop her alternative and augmentative communication. In the last year we have noticed in Rebecca a new interest for learning and we have wished for someone who could assist us in developing her communication system. Our wish came true when I learned about CAYA. We are now in the process of assessing a voice output device (for Rebecca).

As a parent involved with the transformation from Ministry for Children and Family Development to Community Living BC, I, along with many others, advocated strongly for self-determination in the lives of people with developmental disabilities as the fundamental component of planning. Communication is a key to self-determination. Having the ongoing support of CAYA will mean more young adults will be supported to communicate and direct their own lives. Thank you for your continued support of CAYA.

Sincerely, Maria Glaze

• Current Stories
• Previous stories