Thursday, May 21, 2015

Jeremy Sicile-Kira

Autism Light #200 is Jeremy Sicile-Kira.
Special Update!
Original Post: June 11, 2012


Jeremy and his dog Handsome

Jeremy Sicile-Kira is a 26 year old artist from San Diego, California. Jeremy has autism and is nonverbal. At birth Jeremy was diagnosed as severely autistic and mentally handicapped, but as he learned to communicate nonverbally he demonstrated to his educators how much he had learned and was able to learn.  He is the co-author of the book A Life Full With Autism (Macmillan, 2012). Jeremy Sicile-Kira is an Autism Light because of how his life, writings, and art have served to inspire others with autism and all those that love someone with autism and want to see them have A LIFE FULL WITH AUTISM. His amazing life bears some wonderful similarities to that of Carly Fleischmann who was Autism Light #1.

EDUCATION

High School: Jeremy graduated from Torrey Pines High School (San Diego, California) in 2010 at the age of 21.  He had a 3.75 GPA and passed the California High School Exit Exam on his first attempt. Jeremy shared this advice for students with the Autism Light blog, "Try greatly listening to positive people who believe in both your capability and frankly your greatest dreams. Create short and long term educational goals."

The following video is from the 2010 graduation ceremony for Torrey Pines High School that featured Jeremy speaking through his assisted communication device. The event was covered by NBC and Fox.



College: After high school Jeremy Sicile-Kira went on to take some classes at Mira Costa College and did well in them. He withdrew from school in order to pursue his passion as an artist.

TALENTS

Artist: Jeremy has become an artist and is beginning to make a living doing what he loves to do. A portfolio of his artwork is available on his website. On May 17, 2015, Jeremy wrote on his @Jeremyisms Twitter page:  "Truly painting and art gives me great hope for my future and nicely the future of the world."

Author: Jeremy Sicile-Kira and his mother Chantal wrote the book A Full Life with Autism together.  The book was released on March 27, 2012.  In A Full Life with Autism Jeremy and his mother Chantal address the seldom discussed issues related to young people with autism transitioning into adulthood. Jeremy's website describes the book like this:
Jeremy’s first book, A Full Life with Autism, is a guide for helping our children on the spectrum lead meaningful and independent lives as they reach adulthood. In the next five years, hundreds of thousands of children with autism spectrum disorder will reach adulthood. And while diagnosis and treatment for children has improved in recent years, parents want to know: What happens to my child when I am no longer able to care for or assist him?
There has been praise for Jeremy's book from respected leaders across the autism community. Dr. Temple Grandin who was Autism Light #38 wrote the Forward.  Dr. Stephen Edelson who was Autism Light #52 said, "A Full Life with Autism is a must-read book for parents and professionals in the autism field (Jeremy's Vision Website)." You can order this important autism book from Amazon or read more about it at Jeremy's Vision.

Advice for Parents: Jeremy has this advice to share with parents from his book, A Full Life with Autism (Macmillan 2012): "Believe in yourself. Do not doubt that you are the expert on your son or daughter. You have done your best so far, and you can be their guiding light for their future."

Autism Research Institute Youth Representative: Jeremy has been appointed as Autism Research Institute's Youth Representative to the United Nations. He also serves as the California Youth Leader for the Autistic Global Initiative, a project of the Autism Research Institute.

CHANTAL SICILE-KIRA (JEREMY'S MOTHER)

Jeremy's mother Chantal Sicile-Kira, who is a popular autism blogger and operates Autism College, said the following about him in an email to Autism Light in June, 2012.
It has not been easy to raise Jeremy, to advocate for him. But it has been much harder for Jeremy.  Imagine not being able to speak or to have challenges with motor planning and initiation - necessary for every day life. And he is learning to advocate for himself, and for others like him. Jeremy inspires me because he wants to use his writing skills to help others and to make the world a better place--Chantal Sicile-Kira.
How Autism Uniquely Impacts Jeremy:  Jeremy's mother Chantal Sicile-Kira discovered that he has synesthesia, which means he associates colors with emotions. To learn more about how synesthesia impacts Jeremy read the The Huffington Post article that his mother Chantal Sicile-Kira wrote on July 25, 2013. In addition, Jeremy Sicile-Kira has wrote an important piece on his website on autism. He explains how his body is effected by sensory processing difficulties.

JEREMY TODAY

Jeremy Sicile-Kira gave this update to Autism Light on what is taking place in his life in 2015, 3 years after the original post was done on his life. Jeremy says, 
Truly my life has changed very truly for the better. I justly live now pleasantly in my own apartment with a roommate. I have great support staff. Really my life changed when nicely my mom discovered I had synesthesia. My mother inspired me to dearly paint the portraits I was painting in my dreams. Truly this has made a huge difference in my life. Now I paint at my art studio in my city (San Diego) in an art co-op where I was accepted for my talent. I love to paint and people are happy to get their personalized painting based on their colors. This is how I am beginning to earn a living.
Living in an apartment with a roommate means I have to do more chores but I have the opportunity to go out more and see people that I know in the neighborhood.  I volunteer twice a week setting up the beach to help the lifeguards and I meet people greatly there.  I go to local pubs and there are the same people from the beach. Usually I just like to hang out but my beautiful support staff help me believe in my ability to communicate with my newfound friends.   
Nicely truly people all people need to be accepted for their different abilities (Jeremy Sicile-Kira)
ONLINE PRESENCE

Website: Jeremy Sicile-Kira has his own website at www.jeremysvision.com. Jeremy says this about his website on the homepage--"I have a paintbrush, a keyboard and autism. Jeremy's Vision is my view of the world expressed through my painting, writing, and advocacy."

One of Jeremy's poignant statements on autism in his life is the following:
"Autism is an important influence in my life. The hardest part is not being able to talk. God must have been out of voices when he made me.--Jeremy Sicile-Kira."

Social Media: You can follow Jeremy on the following social media areas.
The following is a recent posting on @Jeremyisms on Twitter.

Special thanks for Jeremy Sicile-Kira for being an Autism Light. His progress and development is an inspiration to the autism community. His dynamic maturity gives hope to parents who have children who are the most severely impacted by their autism. We expect to hear a lot from Jeremy in the future as he develops his work as an artist and continues to be an autism advocate. If you wish to keep track of Jeremy's life you can sign up on his website (www.jeremysvision.com) to receive his Email newsletter.

Autism Light honors diverse heroes to the world of autism.

Photo: The photo of Jeremy in this post was used with permission of his publisher.

Tuesday, May 19, 2015

Kansas Lights


The State of Kansas is the home of 3 Autism Lights in 2 posts. The Kansas group includes an autism mother, a musician, and a child with autism who is on the Memorial Roll.

 Kansas Autism Lights

  1. Tyler Gregory is a musician from Lawrence, Kansas. 
  2. Sheila Meldham is an autism mother from Colwich, Kansas. She has been instrumental in taking up the cause of leading autism safety after the tragic death of her son Mason.
  3. Mason Allen Meldham (2005-2010) is a child with autism who died from a drowning when he was wandering away from his family. He lived in Colwich, Kansas. 
    You may reach all these posts by searching the blog through the "Kansas" Label.


    The map of Kansas is attributed to By TUBS [CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

    Sunday, May 17, 2015

    Rodney and Holly Robinson Peete

    Autism Lights #100 are Rodney and Holly Robinson Peete.
    Special Update!
    Original Post: December 3, 2011



    Rodney and Holly Robinson Peete are from Los Angeles, California. Rodney Peete was born on March 16, 1966 and Holly Robinson Peete was born on September 18, 1964. They married in 1995 and are parents of four children, Ryan Elizabeth Peete and son Rodney Peete, Jr (twins born in 1997), son Robinson James Peete (born in 2002), and son Roman Peete (born in 2005). Their son Rodney (R.J.) has autism. Rodney and Holly are Autism Lights because of their autism advocacy through being authors, speakers, philanthropists and operators of a foundation for autism called the HollyRod Foundation. 

    Rodney Peete's Career: Rodney Peete was a star football player for the University of Southern California leading them to the 1988 and 1989 Rose Bowls. He won the Johnny Unitas Award in 1989. Although he was drafted also as a 3rd Baseman by Major League Baseball teams, Rodney Peete chose to play football and he went on to play 16 years in the National Football League from 1989-2005. His career stats are at the Pro Football Reference Website. Rodney Peete played on the Carolina Panthers 2003 team that played in Super Bowl  XXXVIII. Rodney Peete is now a broadcaster.

    Holly Robinson Peete's Career: Holly graduated from Sarah Lawrence College. She has had roles as an actress in the following shows.
    One of Holly Robinson Peete's most inspirational interview's on The Talk about autism was when she interviewed Carly Fleischmann who was Autism Light #1. That interview is available on Carly Fleischmann's Autism Light post.

    For Peete's Sake: It was announced in May, 2015, that Holly Robinson Peete and Rodney Peete and will soon have their own show on Oprah Winfrey's OWN Network. It has a working title called For Peete's Sake. It will be a documentary on their family life of juggling dual careers with raising four children (RealityTea, May 8, 2015).

    The HollyRod Foundation: The HollyRod Foundation was founded in 1997. It helps provide services for people who are impacted by either Parkison's Disease or Autism. Holly Robinson Peete's father was Matt Robinson who played the original Gordon on the children's TV show Sesame Street. Mr. Robinson developed Parkinson's Disease in his 40's and in his honor The HollyRod Foundation was established originally to provide help for those with Parkinson's to obtain services.

    After Rodney (R.J.) Peete was diagnosed with autism, Holly and Rod decided that the foundation would also begin reaching out for autism under the HollyRod4Kids name. More information on the HollyRod Foundation is available at their website at www.hollyrod.org/about. One of the future plans for the HolyRod Foundation is the construction of the HollyRod4Kids Compassionate Care Center for Autism in Los Angeles. Current programs of the HollyRod Foundation include the Gift of Voice, RJ's Place, and the My Brother Charlie Family Fun Day.

    Holly Robinson Peete wrote a song called Come Into My World that she sings with her son Rodney in the following video.




    Authors:  Both of the Peete's are authors in their own right. Holly Robinson Peete wrote My Brother Charlie with her daughter Ryan, which helps neurotypical children understand about autistic kids. Rodney Peete wrote Not My Boy!  to share his story with his son who has autism. The following video is Rodney and Holly Robinson Peete discussing their life with a child with autism and the books they wrote.





    Holly Robinson on Autism: Holly Robinson Peete said this about her son that provides a good look at her passion and perspective on autism. "My son w/autism has an AMAZING brain [and] can tell you any fact about NBA, MLB even NHL! We need to embrace these children in society-god's gifts. We need to change ourselves as a society to accept children w/autism and special needs for who they are (Black Celebrity Kids.com, August 4, 2009)."

    Holly Robinson also says this on her foundation's website, "I wouldn't change my son for the world but I would change the world for my son."

    Social Media:  You can follow Rodney, Holly, and the HollyRod Foundation at the following social media areas.
    Wikipedia: You can also find out more about Rodney and Holy at their Wikipedia pages.
    Special thanks to Rodney and Holly Robinson Peete for being dedicated autism parents and amazing autism advocates. You are amazing heroes for the cause of all the autism community. The autism family is blessed to have your dedication and hard work lighting the way for improving situations for those with autism.

    Autism Light honors diverse heroes to the world of autism.

    Saturday, May 16, 2015

    Justin Zemser

    Autism Light #399 is Justin Zemser.




    Justin Zemser was a Navy midshipman from Queens, New York, who died along with 7 others in the derailment of Amtrak Northeast Regional Train 188 in Philadelphia on May 12, 2015. Justin Zemser was born on March 25, 1995, and was the youngest victim of this terrible accident.

    Justin Zemser is survived by his parents Howard and Susan Zemser.  His funeral was held on May 15, 2015, in Hewlett, New York with full military honors and Naval Academy Jewish chaplain, Lt. Yonatan Warren presided and served as burial rabbi. Justin Zemser is an Autism Light because he found time in his remarkable life to be a big brother and mentor to two children who had autism. Justin Zemser will be placed on the Autism Light Memorial Roll today.

    The following is a photo of Justin Zemser posted on Facebook.


    MIDN 3/C Justin Zemser. Beautiful.
    Posted by Navy Sprint Football on Thursday, May 14, 2015
    Justin Zemser was a high school graduate of Channel View School for Research in Rockaway, Queens, New York. He was the valedectorian of his class with a 4.0 grade point average. He also served as the President of the Student Body and as a standout wide receiver for the school's varsity football team (MSNBC.com, May 13, 2015).

    The following is a news story about the funeral of Justin Zemser.





    New York Senator Chuck Schumer nominated Justin Zemser for the Naval Academy. When he received news of Justin's passing Senator Schumer said, "He stood out among countless applications. He was valedictorian of his class and volunteered at a community church program. He was a big brother and mentor to two children with autism. He was totally well rounded. I mourn the loss for his family. He would have served his country extremely well (New York Daily News, May 13, 2015)."

    Justin Zemser was a second year student at the Naval Academy in Annapolis, Maryland, and had been on the Amtrak train on his way home to see his family. While at the Naval Academy he served as vice president of the Jewish Midshipmen Club and played wide receiver for their sprint football team (NBCNewYork.com, May 15, 2015).

    Justin Zemser was a hero and role model to countless numbers of young people for various reasons, but he was an autism hero because he included being a big brother and mentor to two children with autism into his busy schedule as a student. It would be wonderful if other young people would take on the role of being a big brother and mentor to peers with autism in memory of Justin Zemser. In order to respect their privacy in this time of grief, Autism Light did not contact any of the family or friends of Justin Zemser in preparing the first version of this tribute. Our thoughts are with Justin Zemser's family and friends during this difficult time.

    Autism Light honors diverse heroes to the world of autism.

    Lois Pilot

    Autism Light #398 is Lois Pilot.


    Lois Pilot is an Autism Mother from Orange County, California. Her son Dylan has autism. Lois Pilot died on October 9, 2000, from brain cancer, at the age of 37. Her funeral service was held on October 12, 2000, at Pacific Coast Church in San Clemente, California. She is survived by her husband Kevin Pilot and her two sons Dylan and Kurt. They were 6 and 8 when Lois passed away and are now young men in their early 20's. Lois Pilot will be placed on the Autism Light Memorial Roll today.

    Sketch of Lois Pilot, by Dane, a young man with autism
    Lois Pilot is remembered both for her dedication as an autism mother and for her autism advocacy. Her advocacy started in 1994, when her son Dylan was diagnosed with autism. She is remembered for the following achievements (LA Times Obituary, October 12, 2000).
    • She helped start the Autism Coalition for Creative Educational Social Services and succeeded in establishing a pilot program for autistic children at Aliso Viejo's Foxborough Elementary School in California.
    • She volunteered at Pyramid Autism Center, which was founded in 1998 and continues today to operate in Orange, California. Her son Dylan was one of the first students of Pyramid Autism Center. 
    • She was a fundraiser for autism causes.
    • She was active in a national advocacy group called Cure Autism Now. Cure Autism Now merged with Autism Speaks in 2007.
    Kevin Pilot explained to Autism Light how mothers like Lois were pivotal in the history of autism in paving the way for the increased services we experience around the United States today. Kevin Pilot said,
    In those early days, we had nothing. The school districts were refusing ABA or any other kind of meaningful therapy. The "programs" as they existed were essentially all the disabled kids regardless of disability in a room for the day, separated from everyone else. Everyone told us this is how it is, and this is what we do and they didn't want to change. It took a handful of mothers like Lois to say "no," this isn't how it is and we don't accept that this is what it has to be for our children and they got together. They started meeting, and saying "no." and going to fair hearings. They became medical experts, legal experts, nutritional experts. The meetings got so big that they had to rent halls instead of meeting in people's homes. The school districts started listening and changing. It was really moms like Lois that paved the way for the services that many younger families have today. So in that sense, she is a hero, as are many of the other moms that really gave up their lives for a time in service of their children.
    James Mulvaney who worked with Lois Pilot in the Cure Autism Now chapter in Orange County, California said, "She was a leader in Orange County in trying to get innovative therapy for children. Her house was filled on the weekend with volunteers training people to better help children focus. She had this bubbly enthusiasm, even though she was dealing with a very difficult situation with her son (LA Times Obituary, October 12, 2000)."

    Kevin Pilot told Autism Light that, "Our house was not only filled with volunteers or other parents and people being trained but also children. Our house was an interesting place where children with autism mixed with the neighborhood kids, it was a kind of inclusive environment before inclusion was a word thrown about as much as it is today."

    "If 'mom' is in the dictionary there should be a picture of her in there," Kevin Pilot said. "She was perfect, a terrific mom (LA Times Obituary, October 12, 2000)."

    Kevin Pilot shared this about the enduring impact that Lois had as a mother to her two children.
    Her kids both are kind, love people and are the kinds of people that would give the shirt off their back for someone in need. I think they get that from her. Our oldest son Dylan lives in a group, functioned extremely well for a non-verbal autistic young man who had some very serious behavioral issues growing up. He goes out to restaurants, parks, and movies. He doesn't have as complete a life as I think he might without his limitations but I think he is pretty close to having as complete a life as is possible for him. That is due to his mother. I think there was a moment after the diagnosis when she just decided there would be no stone unturned and she pursued his interest vigorously, with great insight and completely. And I think had she survived, she would have been pleased with the result.  There was light at the end of tunnel even though she just had a small glimpse of it.
    Kevin Pilot told Autism Light about Lois' philosophy of integrating children with autism into the fabric of society,
    That was the thing about Lois. She didn't focus on what our kids couldn't do but more on what they could. I think it is easy to focus on what is lacking in our children and miss out on what shines in them, and I think she always had the ability to get past all the behaviors and communication barriers and see the person inside. And respond and interact with them. She really strived to make Dylan (our autistic son) a part of everything, the family, the neighborhood, and the community.
    Lois Pilot's passion for helping people associated with autism resonates 15 years after her passing. Lois is an example of how the light of an autism mother shines on beyond the length of their years. We remember Lois Pilot today and hope that her example as an autism mother will encourage others to shine a light for autism. Our thoughts are with her family in the loss they experienced, knowing that no amount of time can completely remove the loss they feel.

    Autism Light honors diverse heroes to the world of autism.

    The sketch of Lois Pilot was used here with permission of Kevin Pilot.