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!

 

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

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

Teaching the Skill of Waiting

 

Tired of  your child having temper tantrums when he or she doesn’t get instant gratification? Watch this video on how to teach your child the life skill of ‘waiting.’   This strategy was developed to teach children with autism, but you can try it with anyone. Impatience, be gone!

Can a teenager or adult with autism still benefit from treatments and therapies?

Often I get emails from people asking for advice. This is one I get often, so I’m posting it here.

Dear Chantal,

Can an adult or teenager still benefit from ABA therapy, music therapy, auditory integration therapy? How beneficial is vision therapy and auditory therapies? Are there research studies or evidence based studies supporting these therapies?

Sincerely,   Sheila in Jacksonville

Dear Sheila,

I know we often hear about that ‘window of opportunity’ being open during the early  years, and it is true that early intervention has been shown as being the most effective intervention to help children with autism acquire skills.  However, that window does not  shut after a certain age. One thing we also know is that there is such a thing as neuroplasticity, which means the brain can continue to change and improve, which is why an old dog can learn new tricks.

You are right to look at the research, but when looking at different therapies it is also important to look at the person you are trying to help, and see if he has the characteristics of the type of  person who has benefited from those therapies.  When looking up information in regards to treatments and therapies, as well as research findings, remember to look carefully at who is providing the information (some websites have information but do not tell you the source of the information),  how the research was carried out, and who is reporting it.  Also, adults on the spectrum may be able to tell you what their experiences have been with different therapies.

For  information on the effectiveness of  many treatments and therapies on adolescents, as well as reputable websites for current information,  see my book  Adolescents on the Autism Spectrum.

Chantal

Hire Autistic People; Here’s Why

Margaret Heffernan, blogger for for INC. interviewed me about autism and employment and wrote this blog post. You can read the original post and comments here.

Jeremy is autistic. He is also very bright, observant, and, it now appears, synesthesiac: he sees people, ideas, and feelings in colors. At first, his mother Chantal was skeptical–“I’m not, she said pointedly, from California; I’m from New York!” But she appreciated that Jeremy was being (as always) totally honest in what he told her and, when he said he wanted to start painting, she took him seriously, and encouraged him.

“He’s painting his dreams,” she says, “and people will pay for that. So often, he does advocacy for the autism community. He sits on taskforces. He has tested curriculum to teach life skills. He does conferences. He writes articles, and blogs for the United Nations. And, most of the time, people expect him to do this for nothing–or for coverage of his expenses. He is grateful for the opportunities. But he has a life, and a living to earn too. So the fact that people will pay for his painting: I’m all for that.”

Chantal Sicile-Kira is a leading authority on adolescent and early-adult autism. She’s written five books on the subject, the latest of which Jeremy co-authored. A passionate advocate for the autism community, she is adamant that autistic adults can and will be valued employees.

“Lots of people are pushed into academic qualifications and that’s fine,” she says. “But then the system breaks down after high school. It’s important for people on the autism spectrum to take an extra school year to learn life skills: self advocacy, relationships, organization. If they can do this, they can become employable. It’s utterly wrong that they should end up pushing shopping carts when, a year earlier they were getting high grades.”

As Jeremy writes in his blog, while “unemployment rates are frankly high for people in general, studies in the U.S. show it is greatly higher for those with autism. For example, the organization Easter Seals reported in a 2008 study that 22% of people with autism over the age of 16 have a paying job, compared to 75% of people who don’t have autism. This truth is that our differences make it difficult for employers, employment agencies, and job coaches to realize our capabilities and to offer specific recommendations based on our shared label. Belief in the ability of each person is necessary because judging us by neurotypical (ie “normal”) standards is not a real measure of our capacity for learning and being able to earn a living.”

The imminent arrival in the United States of Specialisterne has prompted a fresh debate about how to employ autistic talent. The Danish firm has pioneered finding meaningful roles for autistic people in Europe and now founder Thorkil Sonne hopes to do the same in America.

“It makes perfect sense,” says Sicile-Kira. “There are so many things that autistic people can do–and do well. For example, anything very repetitious and detail-oriented, work that requires great visual memory for the spotting of anomalies. You might not often think of someone with autism in terms of communication but they can be fantastic at understanding rules-bound communication, where it matters exactly what can and can’t be said to whom. Autistic people are very loyal, fastidious, and reliable. They are not going to come in late because they had too many tequila shots the night before.”

What’s key, she says, is to find (or to become) trusted intermediaries. That isn’t something that is unique to the autism community; after all, she says, she has a book keeper for her accounts. Jeremy is a wonderful painter but he needs someone to help with marketing; most actors have agents. What’s the difference?

I’ve known Chantal for a long time and have always been in awe of her astonishing energy and imagination. She’s proved a brilliant champion for the autistic community and never more so than now, when the first large generation of children, diagnosed correctly with autism, is about to graduate high school. She challenges all of us to think differently about who we might employ and how.

“It will be an economic failure if the new wave of high school graduates can’t be employed. All these kids have talent and ability and a tremendous capacity to contribute. We have to stop thinking that all employees have to be the same, with the same skills, the same attributes.”

It Doesn’t Have to Be Perfect

Often, we don’t start or finish projects because we are hard on ourselves: we expect perfection.

Sure, brain surgery has to be perfect. But not everything requires the same level of perfection.

Don’t let your high expectations keep you from starting on projects, or your ideas won’t see the light of day. All  inventions went through trial and error before becoming useful. Your projects will, too.

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