Parent Advisory Group

Melisa Nellesen Center for Autism

Utah Valley University

Parent Advisory Group

Who

We are parents, siblings, and/or children of someone diagnosed with an autism spectrum disorder. We have been schooled in autism by living with it every day for a collective 282 years.

Our varied backgrounds provide us with skills that have helped us navigate the numerous services, educational needs, and situations we have encountered because of autism. We’ve learned much that can be shared.

Why

Our children have taught us that success can be redefined. We have developed great tenacity by not giving up. Many of us have tried almost everything in an effort to help our children.

Together, we have experience on what is and is not available and what is and is not helpful for our children and others. We have learned how to reach out and communicate about what we need and what the autism community needs to be successful. We can make things happen.

Where

We seek to create a safe and respectful environment in our community. A place for our children, families and neighbors built on a foundation of awareness, acceptance and understanding. We recognize the key and significant role of education and the school environment.

We desire to increase positive school experiences, free from bullying, where there is ready access to available and needed supports. We believe education should include a focus on strength and competency-based learning options.

What

We want to change the way autism is perceived. We will help pave the way for our kids to reach their potential. We invite others to recognize the great things available through autism.

How

We will educate and promote awareness. We can teach many about autism, including our children, other parents, government, local leaders, educators, service and therapeutic professionals and more.

We will recommend customizing services to the individual in political, educational, medical and other arenas. Our approach will focus on strengths.

Our Mission

To establish an environment of autism acceptance, awareness, and support for our children, families, and neighbors. To effectively advocate for their needs and ensure access to adequate and appropriate services.

Our priorities

  • Building the Community
  • Awareness and Acceptance- educating the public about autism
  • Focus on strengths- helping them be as productive and happy as possible in society
  • Adequate and Appropriate Services
  • Ensuring services are available throughout the entire lifespan at all ability levels
  • Customization and serving the individual
  • Effective Advocacy with educators, government and professionals
  • Funding- tax dollars need to be dedicated to autism supports

Our Values

  • Strengths Based
  • Family Focused
  • Individualized Approach
  • Customized Support

Parent Advisory Group Members

The Gibson family

Mike Gibson

I’m happy to be part of PAG because I hope that I can have a positive effect on individuals and families dealing with the challenges of autism I am inspired by my daughter Aubrey. She has high functioning autism. We have learned a lot from our experiences with her. She is a great part of our family. I am also inspired by children and families I deal with at work who are affected by autism.

My experience/connection with autism is primarily my daughter. I also work as a nurse practitioner in a pediatric clinic. I have had many patients over the years that are diagnosed as having autism.

I have had the opportunity to work with these children and their families. I hope to help change the level of care and resources available to those with autism. There are many more options available t now than there were when my daughter was diagnosed. But, there are still many needs that go unfulfilled. I love being with my family, skiing, playing, and having fun.

The Gibson family

Becky Gibson

I’m happy to be part of PAG because I would like to be able to help other families and individuals facing challenges related to autism. My inspiration for doing so is my daughter Aubrey who has high functioning autism. She faces her challenges with courage and a positive attitude. She has taught me a lot about love, patience, and what really matters in this life.

My experience with autism is mostly related to my daughter. So, I can best contribute my experiences as a parent. I hope to be able to make sure that adequate resources and support are provided for all ages and stages of people with autism. I enjoy having fun, laughing, and being around great people.

Burt and Leilani Garfield

Burt Garfield

I'm happy to be a part of PAG because I believe what we do will help my son and other people like him. There are many people with Autism who struggle, and I think PAG can make a difference by supporting families with Autism. My inspiration is my son. My unique experience/connection gives me many ideas of how to help Autistic people contribute to their community. I hope to find a way to help Autistic people be as productive, self-sufficient, and happy as possible.

Burt and Leilani Garfield

Leilani Garfield

I'm happy to be a part of PAG because I care about making a difference for my son and others with Autism. I believe we can help educate society about Autism. My inspiration is my son. My unique experience/connection gives me me compassion for people with Autism and an awareness of their needs.

I hope to help change the perception of Autism. I would like to help society become more accepting of Autism. I have come to appreciate the unique strengths of those with Autism. I would like these differences to be considered a benefit to society, not a disorder. I would like society to recognize those with Autism as people with some of the best ideas. Many innovations have been brought about by people with Autism.

portrait of Don Fairchild

Don Fairchild

My name is Don Fairchild and I’m married to a wonderful woman. We have five children, three of which have been diagnosed with Autism Spectrum Disorder (ASD).

Our family has been on quite a journey together so when the opportunity came up to become part of the Parent Advisory Group I jumped at the chance. Because our family has lived with ASD for the past 24 years, our children are at different points in the spectrum, and we’ve had close association with many other families who also have children and spouses with ASD, I felt like I could offer a pretty broad perspective of what it’s like to have a child with Autism, a young adult with Autism, and an adult child with Autism. I know things that have worked well and things that didn’t and should be improved upon. I welcomed the chance to give back the community which has helped our family so much.

As I look at the Autism community in Utah Valley, I am truly inspired. When I think back to when our first child was diagnosed with Autism in 1992, there were very few services available for to help him and none were specific to Autism. Now, 24 years later, there are many organizations and programs available. Those who choose to work to help those with ASD navigate their way through this world are my heroes. Often it is frustrating work, but it is so very important and vital to the success of those they serve.

Professionally, I’ve worked as a computer programmer for the past 36 years. In addition, I have served on the Wasatch Mental Health Citizen’s Advisory Board and been a trustee of the Friends of Wasatch Mental Health Foundation for the past eight years, chairing the foundation for the past four. I have also been the treasurer for Friends of Giant Steps for the past 12 years. I’ve been pleased to work with these organizations which raise funds to assist those who are in search of better mental health and provide enrichment experiences for children with ASD.

Portrait of Karen Fairchild

Karen Fairchild

I’m happy to be a part of PAG because I know that parents have always been the driving force for change in the Autism community. I have loved being part of changes in our community in the past and I am excited to be a part of change in the future. My inspiration is my 3 adult children on the Autism Spectrum and my extended family with traits of Autism mixed throughout.

My unique experiences both personally and professionally allow me to contribute perspective on Autism across the spectrum and across the lifespan. I hope to help change community awareness of the entire Autism spectrum; opportunities for growth socially, emotionally, educationally, and occupationally for individuals on the spectrum; and more support and direction for the families of individuals on the Spectrum.

More About Me: Autism entered my awareness in 1992 when my 4th child was diagnosed with Autism at the age of 4. In 1995 my 2nd child was diagnosed and even later my 1st child were diagnosed with Autism. I advocated for these children throughout their years in public school and as they have transitioned into adulthood.

Shortly after my son was diagnosed, I chartered a chapter of the Autism Society of America in Utah County and was president of this chapter for 7 years. At the same time, I served on the state board of the Autism Society of America. For 9 years I worked in the GIANT Steps Autism Preschool program through Wasatch Mental Health. While working for Kids on the Move, I began doing diagnostic assessments for Autism and continue to do that today, supervised by Dr. Mikle South.

I have taught in the Autism Studies program at UVU as an adjunct professor and currently teach the parent class for the UVU Passages program. I am currently the co-chair of the Autism Resources of Utah County Council (ARUCC).

Portrait of Emily Ybarra and her kids

Emily Ybarra

My name is Emily Ybarra and I am happy to be a part of the Parent Advisory Group because I feel my experiences, ideas, and passions can be utilized and inspire change and improve the quality of life for those on the autism spectrum and their families. I feel a deep sense of responsibility to help those around me who struggle and through the PAG, I am grateful to have a place to do that.

I am inspired by, of course, my son, Cruise, who is an autism rockstar. His passion and love for life greatly affect my attitude towards autism and the many possibilities and opportunities that can and should be given to everyone’s children, despite ability level. I am also inspired by the many professionals and fellow autism parents who I have had the privilege of rubbing shoulders with and becoming friends with over the years. It is through their dedication and hard work that I feel the motivation and inspiration to contribute.

My goal in participating in the PAG is to better educate the public about autism and the many incredible things that individuals with autism can contribute and offer society. I hope to give individuals with autism a voice and a chance to self-advocate and enrich the world with their unique talents and viewpoints. I also hope to help families struggling, needing guidance or just a community home where they can feel welcome and not judged.

I’m married to an amazing autism dad named Dave and I am a stay-at-home mom of three wild boys (affectionately nicknamed “The Three Stooges”), the oldest being on the spectrum. I love spending time with my family and playing Scrabble and watching Hulu late at night with my husband. I am an advocate for autism, sensory processing disorder, and mental health. I, myself, am diagnosed with bipolar and anxiety disorders and try my best to end the stigma associated with mental illness. In my free time, I am the drummer in a band called The Swoop, I hide from my children to eat chocolate, and I really love to sleep.

Photo of Janae Hakes and her family

JaNae Hakes

As a parent, I have found that the most important factor for our family's success in facing the challenges of raising special needs children is the strength of our community. And so I am so grateful for the opportunity to participate in this parent advisory group and further strengthen our community of families affected by autism--which really is all of us!

I know very first hand about the seemingly impossible uphill journey families affected by autism as well as other special needs are on. Our family has been on that journey for 21 years and we have been lifted along the way by angels in our community--some who have been on this journey themselves and some who have not. My greatest wish is to give back by cheering and supporting and clearing the way for these courageous families who are making their way through the jungle of special needs issues. I love meeting these families, hearing their stories, and interacting with their very unique and inspiring children.

My husband, Darin and I have four children. Our oldest has high functioning autism. Our next oldest is deaf, epileptic, and cognitively impaired. Our third has fought extreme sensory processing issues along with social anxiety. Although most of my work has been with our own children, our family's unique circumstances have given me opportunity to work with other families through early intervention services, as a public school math lab teacher and tutor, and through running a private school's special needs scholarship program as a special needs advocate and tutor.

In addition to the Melisa Nellesen Center for Autism parent advisory group, I am a member of ARUCC (Autism Resources of Utah County Council) and Scenic View Academy's parent board. I am encouraged to see the great work being done by so many people in building a community of acceptance, support and opportunity for our wonderful special families. I continually look forward to the day that the foundation of support and awareness in our community is so pervasive and so accessible that families raising special children can replace fear and isolation with confidence and comradery, and where their children have every reason to look forward to a happy and fulfilling future in a world that appreciates their very important contributions. I hope to be a voice that can guide our community in this direction.

David Banner and his family

David Banner

I am excited to be part of the parent action committee for several reasons. I have been special education teacher of 6 years and have taught over 400 students on the autism spectrum.

They say awareness is the key to breaking down barriers for autism but the more experience I have, the more aware I have become of a unique problem associated with autism. Since autism consists of a wide variety of disorders and a wide variety of levels of severity it is said that when your meet 1 person with autism you have only met 1 person with autism. This creates an experience gap between families working with family members on the spectrum. Autism also presents developmental delays that mean we don’t know the limits of an individual’s capabilities, we just do what we can and watch them become the perfect version of themselves. I have discovered there is a need for awareness inside of the community as much as outside. I would like to be a catalyst for awareness and positivity for anyone working with this unique disorder.

We have four beautiful children, our youngest child has been the blessing in disguise. He was diagnosed with developmental disorders on the Autism spectrum of disorders in 2003. Our lives changed for the better that day but it took a bit of time to see the silver lining.

While searching for a good fit for our son’s educational needs we were fortunate to find a new charter school designed to educate children with Autism. While completing our volunteer hours my wife and I were both drawn to making educating these special children our professions. I have completed my Master degree in special education along with additional specializations. I have worked as a teacher for three local charter schools in all grades ranging from 5th through 10th grades. My current assignment is creating a work based learning program for Spectrum Academy Pleasant Grove campus.

My professional and personal opinion is that these children are gifted, exceptional, wonderful individuals who can teach us much more then we can teach them.

Kim Santiago and her family

Kim Santiago

 

Our family has been blessed and strengthened by our struggle with Autism. We have been stretched, strained and tried and continue to learn more by our journey every day. One thing I learned early on in our discovery of Autism is that collaboration with other families of Autistic individuals is invaluable. This is why I am happy to be a part of PAG. The practical knowledge, strength and comfort that comes from those who know what you are going through and how to best assist has been a boon to our family.

It is my hope that we can find ways of celebrating our Autistic individuals and prepare for a future that accounts for their needs and the needs of their loved ones. I hope that other families will never have to go through what we have and at the same time I hope they will be strengthened and blessed by their struggles as I feel we have. I would like to focus on how to best help the individual with Autism when they are transitioning from their home environment. It is an expensive, challenging and often painful endeavor and I am hopeful that this group can come up with ideas to help ease in this type of transition.