Transition Planning: At Times Funny, But Always Real

I cherish this flower

I cherish this flower

Recently I was invited to speak in Sarnia, Canada – which is across the border from Detroit.  The conference organized by the Jumpstart Lambton Kent Teen Transition committee was entitled “Clarity, Please!” and was about the transition to adulthood.  They launched a new website  which has lots of relevant information and will make it easier for families and teens with special needs to  find the help they need. As well, there is a partnership with Ability Online, a free monitored, supportive, online community for kids, teens and young adults of all abilities.

I love presenting at different conferences around the planet as it gives me the opportunity to hear the experiences of different families, organizations, and the young adults who are on a mission to create the life they dream of.  I presented on Autism Life Skills  and A Full Life with Autism – information that is valid for any person with a developmental disability.  At “Clarity Please!” There was a panel of young adults and their families who talked about their transition to adulthood and how that was going. Although all the stories were different, there were some traits that all the families shared. These were:

  • the parents were strong advocates
  • they raised their children to have good self esteem
  • they made connections in the community
  • they partnered with helpful agencies
  • the young adults had learned to be advocates for themselves
  • they encouraged their  young adult to work towards creating the life they dreamed of, even if it was different from what the parents had imagined for their adult child.
Karen Holland and David Schaller of Pathways Health Centre

Karen Holland and David Schaller of Pathways Health Centre

At each conference there are always some touching and funny moments. My most embarrassing moment at the conference was when I mistook  the mayor of Sarnia and a member of parliament (who were sitting at the presenter’s table with me) as upcoming members on the family panel. I thought it was funny when   Dave Schaller, Manager of Family and Community Services at Pathways Health Centre for Children recapped the day saying my talk was “at times funny but always real.” That’s how I feel about trying to access services for my son, Jeremy!

The most touching moment for me was at the end of the day.  A father walked over and gave me a flower –  fashioned from pipe cleaners that had been placed on each table along with other fidget items. “Here,” he said “My son made this for you.”  Instances like this make the traveling to share information all worthwhile.

Community Connections : Life’s a Beach

Jeremy putting the cones out

Jeremy has always loved the beach. Since moving to San Diego when the kids were little, the ocean has played an important part in our lives. Recently, Jeremy had some time free up on his schedule and wanted a way to give back to our local community that involved his love of the ocean. Beach clean-up days seemed like an obvious first choice, but those days were sporadic and by the time we heard about them, it was too late to change plans we had already made.

Then, I ran into the head lifeguard that we had gotten to know over the years. As a mom on the beach when Jeremy and Rebecca were little, I would park our stuff in front of the lifeguard tower. Jeremy was enthusiastic about swimming and I was not always sure that I or a helper could always keep him close to shore. As a child on the autism spectrum, safety was not one of his strong points.

The head lifeguard mentioned how he saw Jeremy out walking the beach a few times a week (with another adult). I asked if there was anything Jeremy could to help the lifeguards as Jeremy was looking for ways to give back. When he replied, “Well, I don’t know much about Jeremy, what can he do?,” I replied “I don’t know much about the lifeguard station, what do you need?” The Head lifeguard gave me his business card and told me to call him so we could discuss the possibility further.

We met up and talked and the head lifeguard said they needed help setting up for the day and cleaning the safety patrol pick-up trucks. It was decided that Jeremy would start one morning a week. Jeremy was thrilled. He loves helping and interacting with the lifeguard, Johnnie, who works there. Then Jeremy gets to go for his walk on the beach, and finally get some fries at the restaurant on the beach where he is already a known regular.

Jeremy washing the patrol truck

Not only is Jeremy giving back and interacting with some more people, he is also having to learn new  motor skills. As you can well imagine, he is more motivated to wash the safety patrol pickup, than he is to wash the family car.

Giving back by volunteering in a treasured environment, or at a task a person likes to do is a great way to create connections.  And community connections are an important part of every day life.

Jeremy diggin a hole with some assistance

Together We Can Create the Future We Want to See

We all know about the high rate of unemployment for people on the autism spectrum. Below is  a press release about a venture focused  on entrepreneurial solutions for adults with autism that is having it’s first session on Thursday, January 10th.

The Autism Entrepreneurs Center, run by LTO Ventures, is operating  in collaboration with the Achievement Vocational and Life Skills Academy, Grant-a-Gift Autism Foundation, Nevada Department of Employment, Training & Rehabilitation Bureau of Vocational Rehabilitation, and the University of Nevada Las Vegas Center for Autism Spectrum Disorders.

Autism Entrepreneurs Center to Help Adults with Autism Start Up and Operate Real Businesses in Nevada

First Venture in the U.S. Focused on Entrepreneurial Solutions for the 90 Percent Unemployment Rate for Adults with Autism

HENDERSON, Nev., January 7, 2013 – LTO Ventures today announced the opening of itsAutism Entrepreneurs Center, first and only venture in the U.S. specifically established to help adults with Autism Spectrum Disorder (ASD) start up and operate real for-profit businesses.  The first session of the Center will be held Thursday, January 10, 2013 from 2 to 4pm at the Autism Center of Southern Nevada, 72 N. Pecos Road, Suite C, Henderson, Nev.

LTO Ventures  is a 501(c)(3) non-profit company with headquarters inHenderson, Nev. that develops live/work/play communities for ASD adults.  LTO Ventures created the Autism Entrepreneurs Center to provide ASD adults the specific guidance, tools and resources they need to create, launch and operate their own real for-profit companies. LTO Ventures plans to pilot the program in Southern Nevada with the first-year goal of creating 12 new incorporated businesses and putting up to 100 ASD adults to work making minimum wage or better.

LTO Ventures also plans to create two related entities: 1) partnerships between ASD adults and typical adults to jointly launch and operate businesses; and, 2) a “business incubator” to encourage businesses created within the Center to share resources.

“Most vocational programs for ASD adults focus on convincing existing employers to hire them. We believe there are ASD adults who have great ideas and unique talents who would be more successful bringing their own ideas to fruition and working in settings created to foster their abilities,” said Mark L. Olson, President and CEO of LTO Ventures. “By giving ASD adults another choice for meaningful work, we are supporting self-determination in their employment outcome.”

“But like many typical individuals, ASD adults don’t know necessarily how or where to go to get started. Our Center proposes to pick up where job development support groups, short-term vocational training, and employment toolkits end, and provide the step-by-step guidance, tools and resources to create and operate real small businesses,” Olson said.

  •  Easter Seals published in 2011 the results of a study conducted in 2010 that found that only 11 percent of adults with disabilities work full-time, and only 32 percent have any kind of employment, compared to 48 percent of adults without disabilities working full-time and 74 percent working full-time, part-time, or self-employed.
  •  Easter Seals also reported that autism was the most prevalent disability — 62 percent of adults with disabilities in their study had some form of autism (Autism, Aspergers Syndrome, Pervasive Developmental Disability-Not Otherwise Specified, Rett’s Disorder)
  •  Autism Speaks, a leading advocacy organization for individuals with autism, in a 2012 Employment Think Tank, reported more than 500,000 children and teenagers with autism will reach adulthood in this decade and join the market for jobs, housing, and services.
  •  The California Senate Select Committee on Autism reported the average salary for those ASD adults who are employed is $4,824 annually.
  •  Unemployment in Nevada statewide is the highest in the U.S. at 10.8 percent for November 2012, the most recent reported month, and 10.4 percent in Las Vegas.

WHO SHOULD ATTEND:  ASD adults ages 18 and older, and their parents, family, caregivers and agency staff are invited to attend the Jan. 10 session. Anyone else interested in learning more about how to create businesses to employ ASD adults, or to help ASD adults start their own real businesses is encouraged to attend.  There is no cost for this session.

The Autism Entrepreneurs Center operates in collaboration with the Achievement Vocational and Life Skills Academy, Grant-a-Gift Autism Foundation, Nevada Department of Employment, Training & Rehabilitation Bureau of Vocational Rehabilitation, and the University of Nevada Las Vegas Center for Autism Spectrum Disorders.

Life with Autism: Mighty is the Fear

Two caregivers were arrested this past week in Valley Center (near San Diego, CA) for allegedly abusing a severely autistic non-verbal young man in his home. They had been in the family’s employ for over two years and were caught on videotape over a three week period.

This is a parent’s worst nightmare come true; and if it’s a nightmare for the parent imagine what it is like for the victim.

According to reports in the media, the mother, Kim Oakley,  saw changes in her son, Jamey, indicating he appeared to be unhappy on the days following the men’s shifts. Kim also realized Jamey was trying to communicate something to her. When she questioned the caregivers, “They blamed everything on his severe autism,” according to newspaper reports. Kim set up a surveillance camera after noticing that the wires to a baby monitor had been cut. Videos shot over a three week period led to the arrests.

My heart goes out to Kim and Jamey and the rest of the family. Unfortunately their story is not unique and it highlights the difficulties of all families requiring caregivers and support staff for their severely autistic loved one.

How often do we hear about a non-verbal person that “his behavior is due to his autism”? Bull! All behavior is communication and Kim, like most moms and dads, know this. Watch “Autistic Cases ‘Autism Experts’ Run From”    that Kim Oakley posted on YouTube. Jamey’s behaviors  in this video were particularly bad because he had a Urinary Tract infection and once it was diagnosed and treated, he was better. But is took five days to get it taken care of.

Recently my autistic son Jeremy was in so much pain that he became hyper and aggressive and kept trying to take showers as if that would help. Nothing could calm him down. We had never seen anything like it before. He was uncontrollable. We were lucky he could type and tell us he was in pain. But it also took five days to figure out why he was in pain, and a week to be able to do anything about it. Turns out is was due to a change in the generic brand of his medication for epilepsy – we were not warned that any changes in the brand could cause such reactions. You can read Jeremy’s comments about his experience here.

To top it off, the lack of understanding and caring from some of the people at the pharmacies we had to deal with was appalling. Seeing your child suffer and not being able to do anything about it is excruciating, and when those supposedly there to help are not treating the situation with the urgency it warrants is unbelievable. As parents, we try to remain calm and act ‘normal’ and polite so we won’t be taken for one of those ‘crazy  parents’.  We are not crazy.  But we have no patience for not being taken seriously and being dependent on people who just don’t get it. Believe us when we tell you our child is in pain and we need help NOW.

When you have a non-verbal child or a child dependent on caretakers, there is always the risk of abuse, and not just at home. The same risk exists in residential facilities, community living options and even in day programs, camps and community activities. To this day, my son Jeremy suffers PTSD due an abuse that occurred outside the home years ago. He still refuses  to participate in any activities that are not inclusive, that are intended for developmentally disabled participants. As he puts it, “They are grouping the victims.”

Although Jeremy received therapy with some help from the California Victim Compensation Program, he continues to have panic attacks which impact his ability to participate in all that he would like to do outside the home. Recently he had flashbacks and he would flail out and hit whomever was standing close, ‘seeing’ his aggressor. This adds another dimension to hiring and training staff.  As well, it leaves  Jeremy feeling terrible about his outbursts. Dealing with PTSD has become  important to him and recently he completed a painting about his PTSD entitled “Mighty is the Fear.”

Even without thinking about abuse, finding people who understand the importance they have to a person’s quality of life  and the willingness to make the commitment is not always easy when someone requires 24 hour supports. Recently, one person who was hired and trained as a support person and communication partner for Jeremy decided to extend their vacation from two weeks to four weeks, meaning the person would not be around to support Jeremy at either his college class or after school doing his homework at the beginning of the school year as  expected.  This was a big blow to Jeremy and to his ability to attend college successfully.

Most of our experiences with support staff, service providers, medical professionals and others have been extremely positive. Usually I focus on writing about  positive  experiences and strategies, but hearing  about Kim, Jamie and their family’s experience with the two caregivers hit a nerve and I couldn’t stay quiet.  I feel terrible for the family.  Stay strong, Kim!

Trying to learn from all our experiences and focusing on the positive relationships we have forged over the years due to Jeremy’s need for supports is how we continue to survive and thrive.  As Jeremy put it in A Full Life with Autism (Macmillan 2012), “I learned there were really bad people who could do things to your body, but I learned that you don’t have to let them in your soul.

Ain’t that the truth!

 

Kirkus Book Review: A Full Life with Autism

A Full Life with Autism: From Learning to Forming Relationships to Achieving Independence is my latest book co-authored with my son Jeremy (foreword by Temple Grandin) that was published on March 27 by Macmillan. The book has received many excellent reviews. Here is one by Kirkus Book Reviews, whose reviewers  are known as the world’s toughest book critics:

For readers already knowledgeable about autism and Asperger’s syndrome, a hands-on approach to transitioning into adulthood.

Sicile-Kira (41 Things to Know about Autism, 2010, etc.) and her autistic son, Jeremy, join forces in this guidebook to help parents and their autistic offspring move beyond childhood and evolve into an adult life. Although special-education services exist for children with autism spectrum disorder, once a child reaches adulthood the lack of adult services becomes apparent. As the mother of a severely autistic child, the author understands the needs of caregivers and children on the spectrum alike to shift to a quality of life that provides independence for all parties. “To create the future that you and your adult child envision will take perseverance and work,” she writes. “But good quality of life and peace of mind is worth it.” Based on her research, Sicile-Kira has compiled the majority of available resources into an accessible handbook that provides information on topics such as romantic and sexual relationships, finding appropriate living arrangements for true self-sufficiency and acquiring and keeping a job. The author breaks each large, seemingly overwhelming undertaking into small, doable tasks. Bulleted lists sum up each chapter and help readers remain focused and on-track. Equally as effective are the short essays and “top ten tips for parents,” written by Jeremy. His voice gives a personal, honest perspective on the daily life, expectations and hopes of someone with special needs who wants to become as integrated into adult society as possible. Additional resources include reading material and websites for care providers and people on the spectrum.

A proactive method for raising an adult child with special needs.

 -Kirkus  Book Review

Q & A Webinar: Temple Grandin, Chantal & Jeremy Sicile-Kira : A Full Life with Autism

Temple Grandin and Claire Danes

On Saturday, April 7 th from 8:00am PST to 9:30am PST (11:00am EST to 2:00am EST), Visiting Professor Temple Grandin will answer questions with Chantal Sicile-Kira  moderating. Then, for those who want to stick around,  from 9:45am PST to 11:15am PST (12:45pm EST to 2:15pm EST) Chantal and Jeremy Sicile-Kira will be answering questions in regards to their new book, A Full Life With Autism for which Temple wrote the foreword.

This is an opportunity to ask Temple Grandin questions, and get insight as to what is important for preparing our children for life as successful adults. Chantal and Jeremy will answer any questions you may have about raising a child with autism, and the transition to adulthood.  Register for our newsletter to sign up. (If you are already signed up, you will be receiving instructions shortly).

What questions do you have? Let us know, we’ll answer them!

Temple Grandin, PhD, is a doctor of animal science and professor at Colorado State University, bestselling author, and consultant to the livestock industry on animal behavior. As a person with high-functioning autism, Grandin is also noted for her work in autism advocacy and is the inventor of the squeeze machine designed to calm hypersensitive people.  Grandin is listed in the 2010 Time 100 list of the 100 most influential people in the world, and the subject of the Emmy award winning  HBO documentary, “Temple Grandin.” Temple is the author of many books including, The Way I See It, Developing Talents, and Animals in Translation.

Chantal and Jeremy Sicile-Kira

Jeremy Sicile-Kira was diagnosed severely autistic as well as mentally retarded when he was born in 1989. In 2010, he gave a commencement speech at his high school graduation.   Jeremy  co-authored a book A Full Life with Autism ( Macmillan, March 2012) as a  guide for parents and educators helping those on the autism spectrum transition  into meaningful and independent lives.  Jeremy writes for  autism magazines, and his new website, www.JeremySicileKira.com.  He is one of three national Youth Advocates of the Autistic Global Initiative, a project of the Autism Research Institute. In 2007, Jeremy was highlighted on MTV’s documentary series True Life in the episode, “I Have Autism,” which won a 2007 Voice Award. Follow him on Twitter.

Chantal Sicile-Kira is an award-winning author, columnist, and autism advocate, as well as the founder of of AutismCollege.com which provides practical training  to parents and educators. Her latest book, is  A Full Life With Autism, co-authored with her son, Jeremy.  Their  story has been covered by a wide variety of media, including NPR, PBS, MTV, The Chicago Tribune, Newsweek, and Fox News.

 

Dear Governor Brown: Is There a Future for the Disabled — Including Adults With Autism — In the Golden State?

This first was published on HuffingtonPost.com,  May 18, 2011

Dear Governor Brown,

Recently, I read a an article in Disability Scoop discussing a 50-state analysis from United Cerebral Palsy that compared services to the disabled offered across the country, giving preference to states where more individuals are served in the community as opposed to institutions.

California ranked as one of the highest states, coming in at number five. This should have made me happy, considering I’m an autism advocate known for my expertise on transition to adulthood, and I have a son who is now at that magical age of 22 where he is now eligible for adult services.

However, the looming budget cuts remind me of the old Prop 13 days. You were opposed to the passage of Proposition 13, the People’s Initiative to Limit Property Taxation, when you were governor back then. This amendment of the Constitution of California enacted during 1978 cut property taxes, and this decrease in property taxes had a negative effect on public education.

California public schools, which during the 1960s had been ranked nationally as among the best, have decreased to 48th in many surveys of student achievement. Until 1985, California’s spending per pupil was the same as the national average, when it began decreasing.

Years ago, after the passage of the Lanterman Act which gave civil rights to individuals with developmental disabilities in California, I helped prepare young men and women from de-institutionalization so they could live in their own community. Now, my son is 22 and I fear that with the looming budget cuts, the civil rights of many like him will be destroyed, and that institutionalization will once again be the norm for people like him.

Money may not buy happiness, but it does help in providing people the tools to have an education and become a productive member of society, as well as the right to live fully included in the community.

Can you imagine even trying to cut the hard earned civil rights of the African-Americans, or women — two groups who had to fight to be given the same rights as any other (read white male) American? Yet, the state of California is getting ready to cut the civil rights of the disabled and no one seems to notice. The parents of the disabled are so tired caring for their dependent adults and trying to make money they don’t have the time to march or protest in full force.

My son, Jeremy, would be glad to visit you in Sacramento if you need to put a face on the possibilities of the disabled when given a chance, and when families are given the supports needed. You can see how far he has come thanks to his hard work, IDEA and the hard-working public educators. Now, we are struggling to plan his future as budget cuts loom. He wants to become a contributing member of society, but without some help, he won’t be able to do so. What will happen to him, and those like him?

Governor Brown, please think carefully about the civil rights of those with disabilities when you reflect on the budget cuts. They need and deserve our support.

Respectfully,

Chantal Sicile-Kira