Transition Planning: At Times Funny, But Always Real

October 31, 2013
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

October 28, 2013

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

People Creating Options: The Julie + Michael Tracy Family Foundation and Urban Autism Solutions

October 3, 2013

Be the change that you wish to see in the world – Mahatma Gandhi

Here at Autism College  we enjoy highlighting   people that  are working towards creating opportunities for those with autism. Here is a guest blog written by Michael Tracy, co-founder of the Julie + Michael Tracy Family Foundation (JMTF) and Urban Autism Solutions.  JMTF and Urban Solutions  exists to help address challenges  in regards to employment and housing that our young adults with autism face.

Julie and Michael Tracy

Julie and Michael Tracy

Julie and I are the parents of two sons, Joseph, 23, and John, 21. While Joe developed typically, John was diagnosed with Pervasive Developmental Disorder (Autism) in preschool. We tried hard to mainstream him, but John struggled socially. No amount of soccer or Boy Scouts or 4H seemed to help. It tore out hearts out to see him so isolated. In middle school, John developed schizoaffective disorder. By the time he reached his sophomore year in high school he had been hospitalized at least three times and we could see that a big change was needed.

In his sophomore year in high school, John was enrolled in the Sonia Shankman Orthogenic School, a residential, therapeutic school associated with the University of Chicago. In the spring of 2011 he had his most serious psychotic break and was hospitalized for five weeks at Rush Hospital on the Near West Side of Chicago. It was a pretty intense experience for John and our family. While Julie and I were very impressed with the care John was given at Rush, we learned of the need for more specific psychiatric and transitional care directed towards young adults with autism and comorbid mental health problems.

After John was released and back at the “O” School, we founded the Julie + Michael Tracy Family Foundation and Urban Autism Solutions to help address challenges facing young adults with autism. Learning that the vast majority of this population lives at home with their parents and often don’t hold jobs and/or have meaningful lives outside the home, we set out to work with Rush University Medical Center to establish the Autism Assessment Research and Treatment Service Center (AARTS) with the goal of working with young adults on the Spectrum to achieve better outcomes.

Urban Autism Solutions is currently the only organization dedicated to providing wrap around solutions and a path to a fully integrated community life. We plan to create a series of residences for young adults with autism on the near West Side of Chicago. We just purchased our first residence that will house three young adults with autism. The building is in close proximity to Rush, allowing easy access to the Rush AARTS Center. With public transportation, the city is a much more livable place for those like John who will probably never drive. The neighborhood is conducive to walking, as is close not only to Rush but also to the University of Illinois at Chicago, the restaurant district surrounding Taylor Street in Little Italy and the West Loop neighborhood to the north. In the midst of so many businesses and in the shadow of the downtown, we know there may be more opportunities for meaningful employment for John. Finally, an urban setting, due to its diverse populations, might allow for “quirky” young men to “fit in” better.

Another initiative of our foundation is to develop social enterprise businesses to provide vocational opportunities for young adults with autism, as well as returning vets and others who need workforce development. This past summer, we launched a pilot community vocational garden, housed in the Illinois Medical District, just west of Rush. Our goal was to learn about urban gardening, health and nutrition and to create a viable path to greater economic independence for this vulnerable population. In addition to harvesting an abundance of produce, all indications of our initial research and assessment of the first year success of this pilot program are very positive. We are busy planning a major expansion for Year Two and we are exploring selling our produce to an  institutional partner and at a local farmer’s market.

The long-term goal of the JMTF and Urban Autism Solutions is to provide a safe and supported passage to a fully integrated community life. Through our initiatives of residential housing, groundbreaking research, vocational opportunities and an alliance with the Rush AARTS Center, we know we are creating viable opportunities and solutions for young adults and families with autism. To find out more about our foundation, go to www.jmtf.org.

 

 

Autism College Free Q & A with Visiting Professor Robert Naseef, PhD on November 20th

October 3, 2013

Join Visiting Professor Robert Naseef, PhD and moderator Chantal Sicile-Kira in a free interactive Q & A webinar on Tips for Enjoying the Holidays and Managing Stress. You can sign up  here.

Many of us seasoned parents joke that we get more religious during the holidays: we pray our child will not have a meltdown while doing the holiday shopping; we pray that he or she will stay regulated during celebrations with relatives; we pray that we will have the strength to politely ignore the judgments passed upon us and our ‘misbehaving’ child; we pray that our relatives will be more understanding and accepting than at prior holiday celebrations.

We’re happy to have as our Visiting Professor in November Dr. Robert Naseef, who is personally and professionally experienced with the struggles and rewards of raising a child with special needs. On Wednesday, November 20th, at 6:00 pm – 8:00pm PST (9:00 pm to 11pm EST), Dr. Naseef will join us and share Tips for Enjoying the Holidays and Managing Stress. Sign up here  to participate.

Robert NaseefRobert Naseef, PhD specializes in guiding families of children with disabilities at Alternative Choices in Philadelphia.. He is the author of Special Children, Challenged Parents: The Struggles and Rewards of Raising a Child With a Disability and Autism in the Family: Caring and Coping Together.