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

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

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.

 

Jeremy’s Point of View: Person Centered Planning and Self-Advocacy

Jeremy's Team and Friends

Jeremy’s Team and Friends

Guest Blogger: This is a blogpost written recently by my son Jeremy Sicile-Kira for the Autistic Global Initiative. The Autistic Global Initiative recently developed an online training course to train support staff : the  AGI Residential / Daily Living Support Course.  We all know how important training is, this is a wonderful resource!

From Jeremy:

Person centered planning PCP   means that the person who needs supports is at the center of any planning about his or her life. Justly the person must be able to give his opinion even if it is just to point to “yes” or “no”. This PCP is important to having a real life. Self advocacy means being able to really advocate for what you want in life and be ready to let people know what your wants and needs are.

When you need support staff for daily life, it is necessary to kindly be able to make them know what is important to you and to your life. For example the following is important for my support staff to know:

I want friends. Justly I really have a hard time making friends. I nicely need to type  out everything I want to say or point to letters which can take a while. Justly I  need support staff  to help me find places and situations to meet new people and  who can help me to make and have friends. Support staff  have to help me talk to people using my voice output technology.  It is greatly important for staff to support me in writing answers and communicating with others, and not to answer for me. Helping me do that is nice but also necessary for me to have relationships with others besides my support staff.

I need to be given opportunity to use my voice output technology on my iPad. I get less opportunity to interact with people now that I’m not in school. Just using my iPad when ever possible  gives me a voice. Support staff  are nice to give me the opportunity to order in restaurants with my  iPad and not just my letter board. Nicely the voice output app on my iPad is  my preferred communication method  while outside of my house.

Nicely staff need to have an understanding of my real life  goals.  Having support staff who are justly aware of my short term and long term goals is important. Just having everyone on the same page nicely makes a team run smoothly. I think having team meetings really helps remind everyone on the team of my goals. Having short term goals followed through on is a big deal and very important to me. It truly makes me happy just finishing something I put my great mind to. Frankly it also makes me happy knowing that my great team is following through on what is decided is important to my daily life. Nicely every team member should have seen my Individual Support Plan  ISP when they start working with me and we should all go over it frankly at  every team meeting.

Justly having the opportunity to give my input helps me have better days. For example, nicely every morning when the schedule for the day is made I have the opportunity to say what I want to do that day and in what order. Greatly it is just a good way to start the day. Greatly routine is important but so is having fun.

Greatly support staff need to be trained on how to be a communication partner,  and in inclusion.  Justly they need to know how to help me in group situations. It is not easy when you need a device to communicate and staff must feel comfortable in redirecting interactions to me. Also they need to know how to help others feel comfortable in communicating with me.

Person Centered  Planning and Self advocacy are important  to include in every day life for someone like me. Truly my life has meaning because of these two concepts. Greatly I hope all people are given the opportunity to learn them.

 

Travels with Autism: Paris Patterns

 

Musee Quai d'Orsay

Musee Quai d’Orsay

When Jeremy was little, he loved looking at patterns. He was born in Paris and always loved studying the various patterns that French architecture provided him. Back then, I did not know why he was so interested in them. He had autism and admiring patterns appeared to be part and parcel of that.

Years later, when he could write, he explained that he liked patterns because they are predictable  – they don’t change. Patterns help him make sense of the world.

Now I’m back in back in Paris for ten days with Jeremy’s sister, Rebecca. We visited a few patterns Jeremy enjoyed when growing up here, and took pictures for him to enjoy.  I hope you enjoy these  little bits of Paris as well!

Apartment lobby floor tiles

Apartment lobby floor tiles

Street sign and building bricks

Street sign and building bricks

pavement stones (les pavees)

pavement stones (les pavees)

Place des Vosges. Ceiling

Place des Vosges. Ceiling

Lefevre water closet floor tiles

Lefevre water closet floor tiles

Lefevre kitchen tiles

Lefevre kitchen tiles

 

What You Need to Know about Seizures and Autism

Silently Seizing I received the book Silently Seizing a while back and only recently found the time to crack it open – and I’m glad I did! Most people recognize grand mal seizures. However not many know how to recognize an absence seizure, a partial seizure, or a complex partial seizure – they may interpret the odd behavior as a characteristic of autism. Recognizing possible seizure activity is only one of the areas covered in this book which was the winner of the prestigious National Parenting Publications Award. (I like this book so much I also posted about it  on Psychology Today).

This clearly-written book is by Caren Haines, RN who is not only a registered nurse, but also the mother of a 24 year old son diagnosed with autism who suffers from seizures. Caren makes the important point that often times medical professionals analyze the behavior of a person with autism as just being part and parcel of autism, when in fact most of us parents and wise educators have figured out that all behavior is communication. In some cases, a child or teen may be having subclinical seizures and instead of treatment is given a behavior plan.

Caren shares not only how to recognize possible seizures, but describes the helpful data for parents to collect for the neurologist looking to see if a silent seizure disorder is present. As well, Caren shares her son’s experience as well as that of other families, which helps the reader understand more about life with seizures. Dr. Nancy Minshew and Dr. Darold Treffert provide valuable information as well. Also included in the book is a very helpful chart of medical tests to identify underlying causes of autism that may influence the ultimate prognosis of autism.

An important fact that I always tell my audience when I present on the topic of Adolescents and Autism: Many teens on the spectrum who have not been diagnosed as having seizures earlier, develop (or are identified as having) seizures during the teen years – probably related to puberty.

Parents should read this easy-to-digest book to understand more about seizures. It might make a big difference in your child’s life!

 

Autism College Free Q & A with Visiting Professor Lindsey Biel M.A. OTR/L on September 5th

Join Visiting Professor Lindsey Biel M

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, OTR/L  and moderator Chantal Sicile-Kira in a free interactive webinar  on Back to School Sensory Tips

 Register

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com/register/event?oeidk=a07e7xrekxj27cabd90&llr=pi7vyonab”> here to sign up for this free opportunity to get educated

And tell your friends!

 

Practical Training on Adolescence and Autism for Parents and Educators

Teenager:autism.001

Are you a parent (or educator) of a pre-teen or teen? Do you wonder about how, what and when to explain puberty to your growing child?  Are you wondering what an ITP is and how to best prepare your child or student for adult life?  Or do you just think his or her autism is getting worse? Then  this  three-part series taking place on Tuesday evenings September 10, 17, 24; at 6:00 pm – 8:00 pm  PST  (9:00 pm to 11:00pm EST) is for you. This on-line series, will be available from the comfort of your own home (no matter where you live).

Based on the award-winning book, more recent information, and Chantal Sicile-Kira’s popular national presentations, this three-part interactive series on  Adolescents on the Autism Spectrum costs $99 and  includes:

  • The basics on what you need to know when your child or student (of different ability levels) is a pre-teen or teenager
  • Resources for more information on various topics
  • Opportunity for the participants to write in or call in their questions to Chantal.
  • 6 hours of training
  • PowerPoints provided before the live training to help with note taking.
  • BONUS: Opportunity to watch replay of training at a later date (convenient if you miss a session).
  • BONUS: Opportunity to take part in Google+ hangout discussion with Chantal following the series.

Here’s what some past participants have to say about this online course:

“This was so informative. Thank you so much for sharing your knowledge and experiences. I’m looking forward to hopefully meeting with you in the near future.” – Danielle (educator)

“I just have to say that I’ve attended your classes before and I always leave with great information.”  Rachel (parent)

“This is really informative and has just given me lots of things to think about and do.”  Linda (parent)

 “ I’m really enjoying these classes. They’ve been very informative. Thank you.” – Erika (parent)

To attend this class, register here.

September 10: Adolescence 101: The Teen Basics : Everything you need to know (but don’t know who to ask)

Topics to be covered include:

  • 13 things every parent or educator needs to know about teenagers;
  • The general challenges faced by ASD teenagers;
  • Sensory processing challenges in adolescence;
  • Functional strategies to help with daily transitions;
  • Family and sibling concerns;
  • Teaching about puberty, hygiene, self-care, masturbation.

 September 17: Adolescence 102: Relationships: It’s Complicated

Topics to be covered include:

  • The notion of privacy and consent;
  • Relationship boundaries;
  • Introduction to sexuality;
  • Self awareness;
  • Self- regulation;
  • Bullying,
  • Interdependence.

September 24: Adolescence 103: The Transition Years : Plan, Prepare, Practice for  the Real World of Adult Life

Topics to be covered include:

  • Preparing the transition to high school;
  • the ITP- Individual Transition Program and IEPs;
  • Teaching life skills needed for work and / or college including:
  • Self-esteem; Self-advocacy; Executive functioning, Self-reliance;
  • Building on strengths and the use of mentors.

The cost is $99.  To register, go here.

The teen years

The teen years

Jeremy Sicile-Kira’s High School Commencement Speech

Jeremy graduated form high school at age 21 with a full academic diploma. He auditioned to give a commencement speech, and he was one of those chosen.  Here is the speech he gave.

Jeremy Sicile-Kira’s High School Commencement Speech

 

The Story of Luke : A Young Man’s Search for a Real Life (and he has autism)

A few days ago I posted my thoughts on Huffington Post  in regards to World Autism Awareness Day and the need for more acceptance and shared connections. Today, I urge you to see The Story of Luke, a movie about a young man with autism who is searching for a job and a girlfriend.  Today it is having its theatrical release in over 18 cities in the US and Canada. You can find it as well as on iTunes and major Cable On-Demand platforms.  But hurry, they have a goal of breaking into the list of the top 25 most watched movies in iTunes on their first weekend. Breaking into this list is how they can take this movie to a wider audience.

I’d like to suggest that you all see The Story of Luke and share it with your friends for the following reasons:

  • It’s a great story and a wonderful movie. Here’s the trailer.
  •  The depiction of Luke, a young man with autism who wants what all young men want, is excellent.
  • If you don’t know much about autism, this is a good movie to raise your awareness of what happens when they grow up. And April is the month to raise your awareness.
  • If you are involved with autism as a parent or a professional, this story will make you feel positive and hopeful.
  • It’s funny and endearing.
  • You know you have nothing good to watch at home tonight.
  • The movie stars Lou Taylor Pucci, Seth Green, Cary Elwes and Kristin Bauer.
  • It has  participated in over 20 film festivals and won 4 Best Film Awards and 5 Audience Awards.
  • Seth Green likes my glasses. I know, because he told me. (Just checking to see if you are still with me here).
  • We all need to support these small wonderful independent movies or our viewing choices will be limited to more reality TV or web shows. Believe me, that’s where talented filmmakers end up if they don’t bring in the big bucks with their indie movies.
  • Did I say it was a great movie?

The-Story-of-Luke-Poster-v4-SMALL

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