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Passing Kindness On, One Act at a Time
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Shyann's Mentors is a branch of the Shyann Kindness Project, offering mentoring services to parents of children with special needs. While some support groups such as Pilot Parents are based on a specific diagnosis, Shyann's Mentors deal with specific issues within a given diagnosis.
For example, there are many different issues and needs within the diagnosis of cerebral palsy. Differences may include the need for a g-tube or communication device, or support may be needed in dealing with school issues. Shyann's Mentors address the issues specific to a child rather than the diagnosis as a whole.
Our group of volunteers consists of parents and specialists who are willing to provide guidance and support in their specific areas of experience and expertise to help those who are struggling with issues such as:
- Seizure disorder
- G-tube feeding
- Type 1 juvenile diabetes
- Brain trauma/injury
- Liver/kidney disease
- Leukemia/bone marrow transplant
- IEP (Individual Education Plan) support
- School aide support
- Assistive technology/Communication devices
- Assisting with services such as DDD (Division of Developmental Disabilities), ALTCS (Arizona Long Term Care Services), and AHCCCS (Arizona Health Care Cost Containment System)
- Social Work issues
- Insurance issues
- Foster Care/Adoption issues & services
- Support for Spanish speaking families
- Coping with the initial diagnosis
Spanish speaking mentors are available for some of these issues.
To take advantage of this free service or become a mentor volunteer, please call 520-360-7955 or e-mail mentors@Shyannkindness.org.
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SHYANN'S MENTORS RECIPIENTS
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Lizette Pedley became the first recipient of our mentor program services after hearing about us from the nutritionist at Children's Clinics for Rehabilitative Services. Lizette's son, Ian, who was born premature at 26 weeks, has several complex medical issues. Having concerns about the recent placement of a g-tube to provide supplemental feedings for Ian, Lizette contacted Shyann's Mentors. Iveth Martinez and Tina Valente supported the family through phone calls, home visits and demonstrations of feeding and g-tube replacement. The most important area of support has been in listening to the family's worries and concerns, and letting them know they are not alone in what they're going through. Lizette described Iveth and Tina as "very kind people" and has appreciated the help and continued support they have provided.
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| Lizette & Ian |
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Iveth Martinez, a Shyann's Mentors Volunteer, learned first-hand how helpful a mentor can be! Before Iveth's son, Carlos, could receive a much-needed Vagus Nerve Stimulator implant to help control his seizures, the family had to come up with $3,000 for the operation.....money they didn't have. Iveth spoke to Elizabeth Jaquez, our Social Work Mentor, who went to work trying to find an organization willing to help the Martinez Family. After being turned down by a number of different organizations, Iveth was thrilled to receive a check for $2,250 from the Kevin Tidwell Foundation!
Since receiving the implant, Carlos no longer has the "mini" seizures that were a frequent occurrence, and when he does have a seizure, they are shorter than they had previously been.
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| Carlos & Iveth |
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COMMUNICATION DEVICE ARTICLE
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Knowing what a difference it made in Shyann's life, I wrote the following article in the hope it will inspire other parents to seriously consider the use of a communication device for their non-verbal child, especially if they do not have the motor skills for sign language.
HOW IMPORTANT IS A COMMUNICATION DEVICE?
(A Parent's Perspective by Sandy Rosati)
Imagine having your mouth taped shut for a week and being unable to communicate your thoughts, needs and desires. Now imagine having your mouth taped for a lifetime. Can you imagine how frustrating that would be? A communication device can change the quality of life for a child that is unable to talk, and may even alleviate some behavioral issues.
Judging by my daughter Shyann's appearance and developmental delays, many people thought she would never be able to use a communication device, and didn't understand the importance of helping her learn how to use one. Shyann got her first communication device when she was three years old. It was very low-tech, with only four recordable buttons on it. Within a short period of time, Shyann began using that device to communicate what those four buttons offered. Over the course of four years, she moved up to a high-tech device with fifteen buttons, with links to many different pages.
My biggest hurdle was getting Shyann's device used at school. At every Individualized Education Plan (IEP) meeting, I would tell the team how appropriately Shyann was using her device at home. Still, it was a struggle to have some of her school aides and teachers help her to use it appropriately in the school setting, or even make it accessible to her, since it was much easier to do things for Shyann than have her take an active roll by using her device. When a child has a communication device, it needs to be stressed to everyone involved that this is the child's voice, not a toy or something to be viewed as a distraction when the child pushes a button inappropriately. ALL children talk when they're not supposed to, and the child using a device should be treated as any other child in the class who talks out of turn. However, it's important to make sure that the device is programmed with appropriate responses in each setting so the child is able to participate in classroom activities and conversations by using their device. This not only makes school more interesting and makes them feel as if they're part of the class, it will also reinforce to them that what they have to say is as important as what everyone else says.
Since Shyann didn't like to "perform" for others, she would very rarely use her talker when asked to use it on demand, such as to say "hi" or "bye" to someone, or to tell them her name or other information about herself. This contributed to the perception by some that she wasn't able to use her device. The fact is, when Shyann had something she wanted to say, she said it! Therefore, the language programmed into her device had to be both meaningful and motivating to her. Many times when Shyann and I were out somewhere and I told her we were going to go home, but would stop and talk to someone, we would all of a sudden hear "bye bye" repeatedly. Another example is the time we were in a store and it was very warm and I had forgotten to turn on the battery-powered fan on Shyann's wheelchair. As I was looking at something, Shyann told me "I'm hot," and then "thank you" after I had turned her fan on. My husband and I also discovered the feeling of being embarrassed by what your child can say in public when Shyann came on a winery tour with us and interrupted the tour guide by saying "let's go," or the time my husband was in a store with her going down an aisle that was blocked by a very large woman and Shyann commented, "Wow, look at that!" Another time when Shyann had misbehaved, I explained to her why she was in "time out" and told her she needed to tell me she was sorry. I walked away and watched as she "thought it over" for a minute, and then heard her say, "I'm sorry" several times on her device. These are only some examples of the many times Shyann used her "talker" very appropriately to communicate.
Helping your child learn how to use a device, particularly a high-tech one, takes time, patience, practice and perseverance....all things many of us don't have enough of, especially when you have a child with special needs. From personal experience, I can assure you the rewards far outweigh the commitments! Aside from allowing independence of expression, the device gave Shyann the freedom to tell me and everyone else so many different things. If she had not had a communication device, Shyann would not have been able to have any say in what she wanted to do or how she was feeling, or tell us whether she liked something or not, as well as make a comment about something she saw, ask for something she needed, or say she was sorry when she got in trouble. Most importantly to me, without a device, I would never have heard Shyann ask me for a kiss or say that she loves me, words any parent longs to hear.
Giving non-verbal children the chance to have a voice will be as rewarding to you as it is to them. Without this opportunity, you may never know what your child is just waiting to tell you!
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