Show Yourself Some Love : The Importance of Self-Care for Caregivers

Those who followed my blog in the past may have noticed a lot less activity in recent years. In the fall of 2014 my son Jeremy moved out of the family home and into supported living, and found an art studio where he could paint. It has been a wonderful journey helping Jeremy create the life he dreamed of. In 2016 he had his first curated art show (which was a huge success) followed by more shows.

Then, in January 2017 I suffered a concussion when my car was hit by a truck. I spent all of  2017 following my medical team’s advice. At first it meant no activity and no screen time, followed by  various therapies, more rest and restricted screen time. Now, over a year later, I am not yet 100% recovered, but I am driving again, and I am finally able to write and speak professionally once again – although at a slower pace.

One of the results of my car accident was that I was forced to do nothing but take care of myself on a daily basis.  As a parent of a wonderful young person – Jeremy- who requires 24 hour supports, I had in the past ‘stolen’ the time to re-boot and decompress – parents with their children still at home will get this – 10 mins here, 20 mins there,  “date night”  when respite was available. As well, my mind was rarely still – I loved writing and speaking and volunteering to help others – I was always actively solving challenges and creating solutions in my head. That’s how Jeremy ended up having the skills to communicate, and discovering his gift of painting: because  I never gave up on him even if others did and I found solutions to many of his challenges. I remember getting up very early before dawn to work on a book, then going for a run or walk outside before my husband left to go to work and before I got the kids up and off to school. I always practiced some self-care that I enjoyed – I loved getting up early and seeing the night become day – I’m definitely a morning person. But I also knew that if I didn’t do it early in the day while everyone was asleep – I met not get another chance. I never knew what the day would bring.

The car accident forced me to  only take care of myself and let others take care of me as well. Meditations, connecting more with my intuition and spiritual self, massages to help my body heal, and all the necessary therapies (including physical, vestibular, vision, speech) to create new connections really made me focus on ME. And you know what? The world did not fall apart – Jeremy had a very, very  rough time for the first two months, and so did I. But we survived.

Meditation has been a daily habit for me for some time, except for about the first six months after my concussion when I could not focus. the When Jeremy was in his early twenties and  still living at home he started to have more anxiety (on top of the PTSD from past traumatic experiences). It’s a known fact that many teens and young adults on the spectrum have high levels of anxiety. At that time, I realized that Jeremy also had great visualization skills,  so I thought why not have him try meditation? He doesn’t necessarily always sit calmly to listen, but he is still able to meditate.

The first meditations he ever enjoyed were some Deepak & Oprah 21 Day Meditation Experiences.  After taking part in free meditation challenges with intriguing titles such as  Perfect Health Meditations; Finding Your Flow Meditation Challenge, Jeremy would tell me which ones he wanted to listen to again and we would buy them so he could access them at any time.

There has been an interesting side effect to Jeremy’s daily meditation habit. Jeremy is very susceptible to the energy level of whichever  Team Member is supporting him that day. If the person is feeling anxious or stressed, Jeremy feels it.  While Jeremy is meditating, the Team Member who is  listening to the meditation with him usually benefits as well:  Jeremy feels them becoming more relaxed and calm as well. Everyone benefits!

Although I loved the Deepak and Oprah meditation series, I had never visited the Chopra Center. I knew it was somewhere in my area and realized people flew in from all over to take part in retreats and consult with the Mind – Body Medical Group. But it wasn’t until very recently that I learned that there were opportunities for those living close by to go to their take yoga and meditation classes, and to enjoy different Ayurvedic massage treatments.

My message to you today is: make self-care a priority.  Take care of yourself; no-one else will. Show yourself some love. Find what you can do on a regular basis  to keep your body and  mind healthy and your connection to Spirit / God alive. You’ll be happier, healthier and grateful you did.

Love, Sex, God, & Autism

LSGA1 Love Sex logo April Mitchell final web

For years, people have asked me, “How did Jeremy Sicile-Kira  become the person and painter he is today? What is your  your story? How did Jeremy’s Vision  come about?”  Well, here it is! I’ve created –  a 70-minute multimedia storytelling event appropriate for Keynotes, Fundraisers and Special Events.  This keynote can be adapted to your events needs: it can be accompanied by workshops with learning objectives, or  shortened for end-of-year-dinners and fundraisers. “Incredible … powerful… inspirational…” are comments offered by those who saw the premiere in San Diego this past July.

Love, Sex, God & Autism, is  a universal and inspirational story about resiliency and adapting to change. In my 70-minute storytelling event, I humorously and lovingly wrestle with the trials and tribulations of my family’s successful attempt to change the prognosis given to my child – life in an institution.  It’s the hysterical and heartbreaking personal account of a young man’s quest for love, and a family’s search for normalcy – or at least inclusion!  Along the way,  I explore how my upbringing  provided me with the grit and  resiliency  I would need as Jeremy’s mother. Life-changing gifts are discovered, affirming our family’s belief that being “not like the others” means being different, but not less.

For more information, or to book this presentation, please contact us at Autism College.

Your Child With Autism: Life as an Adult & Planning Ahead

The colors of my life as a young boy web

The Colors of My Life as a Young Boy   

Happy days are represented by yellow and green for the calm of doing nothing. Blue for the knowledge my mom gave me. Truly my mom gave me hope represented by white. Truly my mom was the first one who saved me from despair represented by little strokes of red. Greatly my life was mostly pleasant  represented by the color of nice light orange. Gold from above is helping. Greatly my life is better now. – words and painting by Jeremy Sicile-Kira

Thinking about when your child ages out of school services is pretty scary for most parents of teenagers with autism.  The reality is that parents can create a successful future for their child.  But it doesn’t just happen overnight – it’s about having a plan and using the IEP process.

If there is anything I’ve learned as a parent of a child with autism, it’s that you can’t just leave it up to the system – school or adult services –  to figure it out. You have to be involved.  It’s important for parents to realize that when your child ages out of school into adult services – your child ages out of mandated services. Under IDEA – the Individual with Disabilities in Education Act – all students are guaranteed a free and appropriate education.

When your teen or young  adult  either graduates from high school or ages out of school services (at age 22 in most states) – there is nothing guaranteed for your adult child.  Your adult child may be eligible for services, but that does not mean that he or she will receive services. It means they will be eligible to get on waiting lists.

This is why it’s important to  plan ahead and to use the  IEP system to get the goals and objectives on the student’s IEP to learn what they need to learn in order to be successful adults. There are life skills that  every person needs to learn to be able to get and keep a job, enjoy their free time,  live as an adult as independently as possible.   The ITP – Individualized Transition Plan  – exists to plan for the student’s hopes and dreams for their future as adults. Once the ITP is written, the IEP should have goals and objectives that reflect the ITP. Just like your child’s earlier school years, don’t accept the status quo in transition programs because ‘that’s what we do here’ if it doesn’t fit your child’s needs.

Every student is different, but  goals and objectives can be written for every type of person – every student’s ability. Everyone is able to learn – but educators and parents have to be cognizant of HOW that student learns best and WHAT motivates them. Do they have something they really like to do? What are their strengths? For some it is not as obvious. For example, Jeremy just liked to stim, mostly. He liked looking at colors and patterns on  book covers and on rugs. Then he liked learning, and writing when he learned how to communicate by typing – which was a long process.  Then he discovered painting – which he did not like as a child, probably because of the sensory aspects.  Turns out those patterns he liked, were really full of colors he was dreaming about at night. But we didn’t know that till he was 23 years old!

The point is, never give up on your child –  or teenager – or adult. Learning is forever. But it is only while your child is still eligible for  mandated school services under IDEA  that  he or she  will be guaranteed the educators  and supports needed to learn. But be cognizant that the school system can’t do everything.  What can you do that will help your child prepare for the future, or how can you support  your child’s educator  and classmates? For example, If your child has a certain interest, can find someone to mentor him in that after school? Is your child learning to do some chores? Can you find your teenager a volunteer job so he learns responsibility? Can you partner with other parents and support each other and possibly create some options together?

Obviously, this is easier in some cases that for others. We’ve had to spend a lot of time and energy over the years to create opportunities for Jeremy because of his sensory-motor challenges. Jobs or functional living skills that require a lot of fine motor skills are really challenging for him.  Meanwhile he has a productive life doing what he loves, while still working on those living skills he needs to learn. He has a great support team, and  has his independence, but we  are still involved in helping him create his adult life based on his wants and needs. And there is no way we could do it alone, or that any agency could do it alone. It does take a village!

My son Jeremy and I co-authored A Full Life with Autism  so that  parents and educators could learn more about the reality of adult services is, and to offer suggestions on how to best prepare a student with autism for real life. Model programs that parents and professionals have successfully created together are provided.  We hope the book  informs you, and inspires you to plan ahead using the IEP process and whatever else you can do. We also hope  it will inspire parents to get involved and  help create the future with other

like-minded parents and professionals. Together, we can make a difference and create the future.

Chantal Sicile-Kira is an author, speaker and consultant on autism, adolescence, transition services and the effects of autism on the family. Chantal can be reached here.  Feel free to leave comments below.

Full Life Book w Border

Academic Supports for College Students with an Autism Spectrum Disorder: An Overview

Here’s an article  contributed  a few years ago by Marci Wheeler, MSW From Indiana Institute on Disability and Community. The information is still pertinent today.

Academic Supports for College Students with An Autism Spectrum Disorder:  Quick Overview

Each year more information about the college experiences of those on the autism spectrum is written by their parents, professionals and these students on the autism spectrum. “Temple Grandin” a biopic movie of Temple’s life premiered last year on HBO, and won several Emmy and other awards. Included in the film, of this very accomplished woman with autism, is a significant look at Temple’s experience at college. This film also reminds us that fellow college students need information to better understand their peers on the autism spectrum and how to include and support them. There is much more to college life than academics. Intellectually these students are often very bright but many may face a variety of “hidden challenges” that can undermine their ability to navigate a typical college campus and perform well in class. This article will discuss some of the challenges and possible academic supports for students on the autism spectrum.

There is a wide range of functioning and abilities seen across individuals diagnosed with an autism spectrum disorder. Generalities are hard to make except to say that communication and social skills deficits are present. There are also neurological differences that affect everyone on the autism spectrum. However, each person is affected in different ways. The sensory perceptions, motor skills, learning styles and coping strategies are often affected and may cause “hidden” challenges that are not understood by those supporting these students. As a result of these challenges the observable behaviors of students on the autism spectrum may make them appear inattentive, bored, rude, defiant or possibly even on drugs. Ritualistic or repetitive behaviors, an attachment to incongruous objects and additional unusual communication and social skills (especially under stress) can make some of these students seem odd and bring unwanted attention to them.

Some students on the autism spectrum may experience sensory overload and/or be distressed by the social and communication demands of a class. They may have learned “acceptable” strategies to cope and have the ability to stay focused on their intellectual pursuits such that they can navigate through their classes (at least the classes in their chosen major) and pass as “normal”. Some students expend a lot of energy, at all costs, to blend in and not be detected. Unfortunately, for some, this may result in them leaving the university without finishing a degree as the stress is too great. Also, on any college campus be assured that there are students who have not been formally diagnosed or students that are not diagnosed until their college years.

Professors and other instructors need to be aware of possible supports that a student on the autism spectrum might find necessary to participate in class and complete classwork. The following six sections briefly state a common concern for most students and list some possible issues and accommodations. Each student on the autism spectrum has unique needs and should work closely with instructors and other college staff to design an individualized plan of proactive support and response to challenges if they arise.

Communication Skills
By definition (following diagnostic criteria) all students with an autism spectrum disorder have some problems which may interfere with receptive or expressive communication. Some of these differences are very subtle and can lead to misunderstandings that are misinterpreted as volitional acts on the part of the student. Students with an autism spectrum disorder may be very articulate and have a large vocabulary which may “hide” their communication challenges. Those supporting students on the autism spectrum should become aware of each individual students weaknesses in this area. Some of these are listed below along with possible accommodations.

Receptive difficulties often experienced by students on the autism spectrum include processing verbal exchanges more slowly, misunderstanding sarcasm, idioms and jokes, very literal interpretation of words, and misunderstanding gestures and body language.

The expressive difficulties of individuals on the autism spectrum may include problems initiating communication; even for those students who at first glance may seem very articulate and even very talkative. Those on the autism spectrum may have trouble staying on topic, turn taking and following conversational “protocol”. Some may be slower to organize thoughts and speak, and/or their voice tone and volume may be unusual. Idiosyncratic use of words and phrases may be present.

Accommodations for a college student with an autism spectrum disorder might include providing the instructor’s lecture notes or a note taker to help key in on important information, providing study guides for tests, allowing a longer verbal response time from the student and allowing for important exchanges of information to be done in written form. It would also help for instructors to be clear, concise, concrete and logical when communicating as well as asking for clarification; don’t make assumptions about what students truly understand.

Social Skills
Social skills might not seem important in a class setting, but, in fact social difficulties can and do impact the classwork of many students on the autism spectrum. Many college courses require class participation and group work as part of earning a grade. Just going to class with peers necessitates the use of social skills. Some social difficulties and possible accommodations are discussed below.

The social challenges for a student on the autism spectrum include problems understanding others perspectives, sharing space and making eye contact. Many high functioning individuals with an autism spectrum disorder have extreme social anxiety and have difficulty negotiating with others, and interacting and working in pairs or groups. These students likely will not understand the “unwritten” classroom etiquette and will often misinterpret facial expressions and other non-verbal cues. Possible accommodations for students on the autism spectrum include allowing for short breaks to leave class and/or allowing the student to have a “social buffering” object which might include a computer, book or other object that initially might seem distracting or “out of place”. Honoring the student’s chosen level of eye contact w/o judgment can be helpful. If there is group work assigned for class the instructor might assist in the formation and monitoring of pairs or groups of students to assure the proper inclusion of the student with an autism spectrum diagnosis. Also providing written rules for asking questions and other classroom logistics (as needed) may support students with an autism spectrum disorder diagnosis.

Sensory Differences
Though currently sensory issues are not part of the diagnostic criteria for an autism spectrum disorder, sensory processing issues seem to affect the majority of these individuals. Some on the autism spectrum have an extreme over sensitivity or under sensitivity to input, from the environment to the five senses: sight, hearing, touch, smell and taste. A significant number of persons experience synesthesia. Synesthesia may affect any of the senses. Synesthesia is phenomena in which the actual information of one sense is accompanied by a perception in another sense. Listed below are some common sensory differences and accommodations that may be important in a class setting.

Common visual and auditory sensory difficulties experienced by students on the autism spectrum include florescent lights that may appear to flicker and certain “bright” colors that may produce “overload”. Someone may see better from a “different” angle or may hear low level frequency sounds emitted by florescent lights. Also certain “typical” classroom sounds may be perceived as “painful” such as the movement and use of desks, people and other objects in the room. Often a person on the autism spectrum may not filter out extraneous sounds and/or may hear sounds in the next room.

Sensory issues related to the sense of touch and/or the sense of smell may occur. For example, certain textures may be “painful” and/or individuals may crave certain textures. Students on the autism spectrum may be disturbed by people accidentally bumping them or the feel of a particular desk or chair. They may wear “unusual” clothing, footwear or accessories because of sensory differences. Also students may be sensitive to certain odors and certain smells may cause “overload”. Some who are very sensitive may be affected by scents from certain perfumes, deodorants and soaps.

Possible accommodations to support a student with sensory differences include allowing hats, sunglasses and tinted lens glasses to be worn and allowing ear plugs or ear phones. Also allowing the student to choose their seat and helping to assure it is always available may be important. If requested by the student, an alternative writing instrument for tests and assignments and/or a computer for in class work, tests and assignments might also be an appropriate accommodation.

A student with an autism spectrum diagnosis may find that a small sensory item brings comfort in class. It is likely, if a student uses a sensory item, that it is inconspicuous but this may not always be the case. Be aware that a student may make a last minute request for a seating change and/or to leave abruptly due to sensory overload. Help devise an acceptable plan to address urgent sensory issues for the student.

Motor Skills
Both fine and gross motor skills may be affected in individuals with an autism spectrum disorder. In addition motor planning and poor awareness of body in space are two areas that often affect motor skills for these individuals. Often fine and gross motor skills as well as motor planning skills are very uneven. Listed below are possible problems in these areas along with possible accommodations.

Fine motor challenges for students on the autism spectrum might affect writing, drawing, turning pages, using utensils, playing an instrument, using locks and keys, and manipulating small objects. Gross motor challenges may affect walking (may have “odd” gait), running, sitting and balancing. Motor planning and the awareness of the placement of their body in space can affect the ways in which an individual moves their body and is able to navigate themselves to accomplish all motor tasks.

Possible accommodations for students on the autism spectrum with motor skills difficulties include allowing a computer for in class work, tests and assignments, providing a note taker, allowing work assignments done at a slower pace, providing models and step by step instruction, providing extra time to take tests and providing readers and scribes (or technology that reads and takes notes). Further accommodations might need to be considered for students taking physical education courses in which motor skills differences might provide further complications.

Learning Style
Students with an autism spectrum disorder often have a very uneven learning profile. They often excel creatively in a non-conventional way. Students on the autism spectrum tend to have excellent long term and rote memory abilities. Executive functioning deficits cause these students many problems. Many are thought to be right-brained thinkers. Most need to like and trust an instructor before they can perform in a class. Some common learning challenges, strengths and possible accommodations are listed below.

Executive function challenges experienced by students with an autism spectrum diagnosis include general organization and planning skills, problems with impulsivity and problem solving and the ability to monitor themselves in the completion of a goal.

Along with the executive functioning deficits, common learning barriers include poor sequential learning, easily bored with repetition once something is learned, attention problems, literal thinking, nebulous sense of time and as mentioned previously, perspective taking deficits. Other issues that impacts learning for students on the autism spectrum are the fact that they need to understand why something is important, relevant or meaningful to them and they may not realize they are having academic difficulty until it may be too late or too difficult for them to rectify on their own.

The strengths of students on the autism spectrum can sometimes help them compensate for their weaknesses. These students can do quite well academically, especially in their chosen field, and their strengths should be respected and used whenever possible. For example these students may have extremely good visual and visual-spatial skills. They often learn best from whole to part (complex to simple) and they can be very creative; out of the box thinkers. These students can also show an amazing knowledge on topics of interest which is most often their major field of study at the university.

Possible accommodations for students on the autism spectrum to support their learning style include providing review sheets, work checklists, and “sub” deadlines and/or intermittent “check-ins.” If possible provide hands on learning, models, demonstrations and other visuals. If possible, pair with peer mentors who might help with feedback and provide “proof-read” opportunities and ongoing structure to keeping on target with work assignments.

Instructors can help support students on the autism spectrum by providing reinforcement at every opportunity. Other accommodations that might be helpful for some students are allowing advanced negotiation of deadlines, extra time for tests, and/or a separate “quiet” place for tests.

Instructors and other college staff can also encourage the use of calendars (computer, traditional, phone w/alarms). Most likely the student has experience with using an organizational tool or tools, of choice, before coming to college. However, sometimes in a new environment the tools and skills used and learned to compensate for executive function deficits do not transfer easily to a new setting. Because the setting has changed, the student may need time “extra” transition time to begin the use of these tools and to maintain routines in the new environment.

Coping Skills
Individuals with an autism spectrum disorder frequently describe themselves as dealing with a lot of anxiety and stress. Sensory sensitivities, social and communication expectations as well as transitions and unexpected changes often trigger this anxiety and stress. It is during these times when these students may display behavior that can seem bewildering, rude or disruptive. Most often when a student displays these behaviors they are doing what they know to do to cope. In fact, these sometimes “confusing” behaviors are often experienced as calming. Included below are examples of coping behaviors in which students with an autism spectrum disorder may engage and possible accommodations.

When under stress, students on the autism spectrum may engage in stress relieving activities which look odd and may even make others feel uncomfortable. These activities may include body rocking, pacing, waving or flapping hands or fingers repetitively, chewing on their clothing or body, “lecturing” on a topic of interest or they may display the “opposite” emotion for the situation. They also may abruptly leave the situation with no explanation before or afterwards.

A possible accommodation in helping the student cope, in the moment, might be to discretely ask the student if something is overwhelming and/or ask if the student needs help or wants to leave. Do not discourage or interrupt behavior unless truly disruptive and understand that student does not intend to be disrespectful. Allow sensory items and/or other “comfort” objects. A student, who is having a hard time coping, might not realize when s/he is being disruptive and needs to leave. The instructor and student can agree on a cue that the instructor can give to signal to the student that it is okay/time to leave. They can also agree on a signal, to inform the instructor when the student is overwhelmed or confused.

Ideally, preparing young adults with an autism spectrum disorder for the demands of college has started years earlier. With a proper diagnosis, individualized early intervention and careful transition planning, college students with an autism spectrum diagnosis, will be better prepared to advocate for themselves. At the same time college professors and other staff at post-secondary colleges and universities need to be prepared for students on the spectrum who are seeking to be a part of these institutions in greater and greater numbers. These students must be given reasonable accommodations to provide an equal opportunity for pursuing a college education. Many great minds and opportunities for society could be lost if individuals on the autism spectrum are not supported in their post-secondary academic pursuits.

Note:

The information in this article is based on Marci Wheeler’s work at the Indiana Resource Center for Autism, Indiana Institute on Disability and Community at Indiana University-Bloomington; including her role as Advisor for the Students on the Spectrum Club at Indiana University – Bloomington.

If you need more information about supporting students on the autism spectrum in a university/college setting, please contact your local autism organization or campus office for students with disabilities to find out who can assist. Indiana residents can contact Marci Wheeler at mwheeler@indiana.edu or phone (812) 855-6508.

With Special Thanks to the members of the Students on the Spectrum Club at Indiana University – Bloomington for sharing their insights as they navigate the college setting.

Resources
Attwood, T. (2007). The complete guide to Asperger’s Syndrome. Philadelphia: Jessica Kingsley Publishers.
Harpur, J., Lawler, M. & Fitzgerald, M. (2004). Succeeding in college with Asperger Syndrome: A studentguide. Philadelphia: Jessica Kingsley Publishers.

Palmer, A. (2006). Realizing the college dream with autism or Asperger Syndrome: A parent’s guide to student success. Philadelphia: Jessica Kingsley Publishers.

Prince-Hughes, D. (2002). Aquamarine Blue 5: Personal Stories of College Students with Autism. Athens, OH: Ohio University Press.

Wolf, L.E., Brown, J.T,. Bork, G. R. K. (2009). Students with Asperger Syndrome: A guide for College personnel. Shawnee Mission, KS: Autism Asperger Publishing Company.

 

One Person’s Experience with The AGI Residential/Daily Living Support Online Course

Jeremy Sicile-Kira wrote the following blogpost in January 2014. He had the opportunity to have two new staff members take the The AGI Residential/Daily Living Support Online Course, which provides best and evidence-based practices for those who support the daily-living needs of transition aged students, young adults and adults with autism and related disabilities. Jeremy wrote about his experience and his thoughts about the curriculum. Jeremy recently reached his dream of moving out into his own place. Jeremy’s  comments below, were originally published in an Autism Research Institute newsletter. Jeremy is the co-author of A Full Life with Autism


Jeremy and JL
Kindly having well-trained Direct Support Providers is frankly the key to having a successful life for me and others like me. Two new direct support providers who joined my team nicely had the opportunity to take the online AGI Residential/Daily Living Support course. Frankly they learned more about autism then I could kindly teach them. Basically the Autistic Global Initiative (AGI) course greatly gave them a really firm foundation for understanding why I was the way I am. The course justly explains key elements about how to figure out why we act the way we do and how to best support a person with autism of different abilities. Kindly general information about autism is not always nicely explained in training given by organizations who hire staff to support people like me or other types of autism. Often training for support staff is about legal, medical, safety and health issues. Kindly they may train on how to handle behaviors, but not about why we have those behaviors. Kindly the support staff who went through the AGI training frankly had a better grasp of self determination than before they started working with me.

The new staff following the course learned nicely faster and more completely how self determination in reality applied to my life and justly how it meant they had to kindly learn all the best ways to support me.

I am very grateful that my two new staff members had this opportunity. They greatly learned how to insure that my dearly-needed supports were in use. Frankly having plans is the most important support. The staff help me to schedule my time so I have work, chores, learning, and social activities. Mixed in to my schedule are strategies to help me stay regulated. Greatly my mother in the past helped with this scheduling; now greatly trained staff can help me build my own schedule. Having a plan means believing that I very nicely know how to prepare myself mentally for the day. Having a plan is important to avoid stress and anxiety.

Justly the very kind support staff behave better when they have an understanding of what causes difficulties for me. Greatly my hope is that I won’t very much need to be supported every day in the future, and that I can become more independent. The AGI course gave the new staff a better understanding of techniques to help me learn how to physically move my body to learn and do functional living skills. Truly my body gets stuck. This means that when I try to move it does not respond to my command. Greatly the staff made conversational remarks about the course and I could tell they were learning more and greatly improved every week.Justly I noticed that their confidence grew as their knowledge did. Nicely when staff feel comfortable, I do as well. Justly the staff understands how to best support me when I experience anxiety and PTSD. Frankly nice staff make me feel safer when I’m out because I know they can help me stay calm. My comfort level goes up when I feel safe.

Greatly my mom does not need to train new staff who took the AGI course about autism, only about Jeremy-specific training that I want my support staff to have. Truly I feel more happy knowing that when I move out to my own place there is a program that can help with training new staff.

Jeremy and Handsome

 

Transition to adulthood: Jeremy is moving into his own place!

Jeremy (a bit overwhelmed with so many people invading his space at the same time) and part of Team Jeremy.

Jeremy (a bit overwhelmed with so many people invading his space at the same time) and part of Team Jeremy.

Jeremy is moving into his own place. Months ago, when we found out that Jeremy  received the approval and supports (from the powers that be) to make Jeremy’s dream a reality, I enthusiastically stated in an AutismCollege blogpost that Jeremy and I would be blogging about the process of preparing for this major transition – in the hopes that some of the information would be useful to others.

As John Lennon once wrote, “Life is what happens to you while you’re busy making other plans.”  Here it is, almost six months later, and we’ve had no time to write.  I’ve moved over fourteen times since I was a baby, so I’m no newbie when it comes to moving into a new home. But for Jeremy, moving meant more than just transferring to another living space. In the book, A Full Life with Autism, Jeremy and I described  some of the preparation that has been ongoing for years. Here’s what the last six months have entailed:

  • Learning to be more independent in certain home skills:  Learning physical tasks is challenging for Jeremy due to his visual processing and motor skills. Practicing in a familiar environment helps before transferring the skill to a new environment. We have to break down tasks into simple steps.
  • Learning what it means to be a good housemate: As soon as Jeremy knew that his dream was coming true of having his own place shared with another person; he wanted to know what it meant to be a good roommate. He asked a young man he knows at his volunteer job to have breakfast with him so he could ask him what to look for in a roommate, and how to be a good roommate. He had heard this man talk about his roommates, so he figured he might have advice. Then, Jeremy wrote some simple rules for himself to follow, ie “The first rule is that I need to do my dishes when I make food.”
  • Finding the right apartment in the right neighborhood: Jeremy has always wanted to live in the neighborhood he grew up in because everyone knows him. When he goes out shopping, or walking the dog or to the beach, people stop and talk to him. That’s important to him.
  • Finding the right housemate: Jeremy needed to find someone who would share the apartment with him (each have there own bedroom and bathroom). Jeremy needs 24 hour supports, and the apartment-mate would be responsible for being there most nights. LifeWorks (the company that was vendored to provide supports and supervision to make all this possible) found Jeremy’s housemate.
  • Finding the right staff: We are lucky in that we have wonderful support staff that have been with Jeremy for years, but we needed more people to fill all the hours on the schedule, and LifeWorks  found people that were a good addition to the existing Team Jeremy.
  • Staff training: Because of Jeremy’s communication challenges, training was and continues to be a high priority. New  ‘Team Jeremy’  members receive a certain amount of training so that they- and Jeremy -can feel comfortable and safe as they go about their day.
  • Preparing the apartment: Having the apartment as functional as possible for Jeremy helps him be more independent. Where everything is placed in the cupboards, how everything is organized is what makes him successful in completing tasks. Think about how someone with limited visual skills and limited motors skills needs to be able find and get what he needs for everyday life – that’s what Jeremy needs to be as independent as possible.
  • Having his sister Rebecca’s advice on his décor: Jeremy was very clear as to what he wanted in the apartment (very little) the colors he wanted (solid, no patterns and lots of green) and what he wanted to hang on the walls (a few paintings representing calmness, friendship, love). But he wanted his sister- whom he has helped move away to college and into different living situations there- to help him find the furniture needed in the living room and to help him with figuring out where to hang his chosen paintings and posters.
  • Earning the money to pay for his rent: Jeremy is responsible for his share of the rent, and he wants to earn money from his painting. Mom is helping with the marketing at the moment (anyone want a painting, prints or cards? Contact me!).

There is undoubtedly much more to add to this list, but this is a good start. At time of writing, September 1st is the official date for Jeremy’s full-time move to his apartment.  Just like Jeremy learning the skill of pointing to letters to communicate, being ready to move out away from his parents did not happen overnight. He has been preparing for this transition for many years (read A Full Life with Autism).  It’s a process, and it is still ongoing. There are sure to be bumps in the road, but that’s life. We feel grateful that wonderful Team Jeremy and LifeWorks are here to support him  as he takes the first steps of living his dream.

All you need is love …

Love&AutismAs parents, most of us are concerned with the basics in regards to our children with autism: “Are they getting their educational needs met?”  “When they grow up, where will they live and will they be employed?”  Of course, these are important concerns. But so are creating  connections with others, and developing healthy  relationships. It’s not always easy to know how to help our children foster relationships.  If you are a parent or educator in Southern California, then you are in luck. Love & Autism: A Conference with Heart is taking place in San Diego on August 23rd and August 24th.

Jenny Palmiotto, LMFT,  Owner and CEO of The Family Guidance & Therapy Center of Southern California  decided to host this conference, and Jenny explains why in this blog post from the RDI Connect website: “As a professional who works directly with the autism community, the version of autism that the media depicts is far narrower than the diversity of people whom I have the privilege to work with on a daily basis. Likely the most devastating myth that I hear about individuals with autism, is that “people on the spectrum” do not want or need relationships. The most worrisome part of this falsehood is when loved ones and individuals on the spectrum start to believe this debilitating myth. It is crucial and long overdue that we discard this limiting belief. Relationships define lives, everyone’s lives. Our primary goal in life is to love and be loved; this does not change when you are born with neurological differences associated with autism. Love is an innate and fundamental part of being human.

Many people struggle to find love and trusting relationships; some of those people have a diagnosis called autism. The diagnostic criteria for autism include social deficits as one of the three hallmarks of the disorder. However, the core deficit in interpersonal relationship does not mean that there is not a desire or longing to connect with others. Individuals on the autism spectrum want and need relationships at all phases of their lives.

New research shows the bi-directionality of autism, meaning that when an infant that later becomes diagnosed with autism interacts with his mother, he is more withdrawn, responding less to his mother’s attempts to interact and then, in turn, the mother’s interactions become more directive and less responsive/sensitive. The early relational disturbances that mark the parent-child relationship for those on the spectrum frequently extends over the course of life with difficulties in developing friendships and later intimate partnerships. Regardless, individuals on the spectrum feel the same emotional longing to belong and to be a part of something special at home, on the playground, in working/professional relationships, or as part of a team. The problem becomes: how can individuals on the autism spectrum get the closeness they want and deserve?

The ability to give and receive love is far more than a social skill that can be learned; it takes perseverance, reflection, risk, and trust. Our brains are experience dependent organisms, meaning that an individual has to experience relationships rather than simply learn about them in isolation. Professionals working with individuals with autism need to begin by understanding the neuro-science of attachment and love. It is essential that autism professionals do more than stop aberrant behaviors. We need to make sure that our interventions and methods have relationships as the primary focus. Relationship building cannot be secondary to behavioral skills training. Developing the “we” is important from the first moment of life and thus should also be central within our treatment options for those on the spectrum. Fulfilling reciprocal relationships are not only possible for all individuals on the spectrum, they are imperative to living a full and satisfying life.

If you are interested in finding out more about how to help your child, spouse, sibling, or loved one on the spectrum develop rewarding relationships; please join us at Love and Autism: A Conference with Heart on August 23-24th 2014. We know you will LOVE this event.”

To receive more information about the conference, sign up here.

Student and Military 50% off if they email info@familyguidanceandtherapy.com, or event text (619)607-1230 a picture of their student or military ID.

Regional Center Members  can attend for FREE after Regional Center funding – email info@familyguidanceandtherapy.com  for links.

For any questions, please contact  info@familyguidanceandtherapy.com.

Love and Autism: A Conference with Heart

IMG_2050Months ago I posted here that Jeremy was preparing to move this summer and that we would be blogging about the preparation and transition. Well, as you all know, life is what happens when you are making plans. I’ve been swamped with work and so has Jeremy (painting orders keep arriving…) and the actual transition takes a lot of time and energy. Perhaps when he is actually moved out 100% I’ll have time to write about the experience to help others -people keep asking us to do so.

The most important aspect of life is the relationships we have with others – family, friends, lovers. A few years ago I wrote about Jeremy’s yearning for love in Autism & Modern Love . In our book A Full Life with Autism,  Jeremy and I shared our experiences in trying to help him in developing relationships or finding out more about sexuality. It wasn’t easy. It was hard to find resources then, and still today  rare is the opportunity  to help our loved ones on the spectrum prepare for this aspect of their life.

Love&Autism

Finally, there is a conference – Love and Autism: A Conference with Heart – taking place in San Diego on August 23rd and 24th that is all about having healthy relationships between family members, between couples, between friends.  No matter the age of your loved one, it’s an important topic to help with his or her emotional growth, necessary for all the different types of relationships possible.

I hope to see you there! Readers of this blog can get 20% off  registration at sign up by using the coupon code: LOVEASD. Student and Military 50% off if they email info@familyguidanceandtherapy.com, or event text (619)607-1230 a picture of their student or military ID. Regional Center clients can attend for FREE after Regional Center funding. Email info@familyguidanceandtherapy.com for links.

 

 

Free Online Autism Conference April 26th & 27th: Focus is on Transition to Adulthood

 Moms Fighting Autism and Autism College are partnering up to offer a free virtual conference on Saturday April 26th and Sunday April 27th from 8:00 AM to 5:30 PM PST. This year’s theme is: Autism from Adolescence to Adulthood, Preparing for Independence and Growth. Keynote speaker Chantal Sicile-Kira, author of five award-winning books on autism, will be speaking on Preparing for the Transition to Adulthood.  Speakers include: Brian King, author of Strategies for Building Successful Relationships with People on the Autism Spectrum, Greg Zibricky,CFP, author of F.A.M.I.L.Y. Autism Guide: Your Financial Blueprint for Autism; Janet Lawson and Dan Swearingen founders of Autistry Studios, on Building a Working ASD Community; and Wendy Partridge, Executive Director of Heroes of the Game, Inc., speaking on “Work Incentives Planning and Assistance.” 

011_3“The transition to adult life can be a rude awakening for parents as well as the young adult,” said autism expert and founder of AutismCollege.com, Chantal Sicile-Kira. “The unemployment rate for adults with autism is very high, and we can do a better job of preparing them during their school years. Listening to these speakers is a great way to get empowered with the information parents need to know.”

 We know that parents and professionals don’t always have the ability to attend conferences due to time, geographical location, or finances, and hope you’ll consider joining us virtually. Registration is completely free, and attendees can use their computers or smartphones to both listen to the talks as well as post questions live to the presenters. Readers may sign up for the conference here.

“In honor of Autism Awareness month, I want to provide free practical information on autism to all who need it,” said Ernest Priestly, Founder of MomsFightingAutism.com. “For many parents, it is difficult to leave home to attend conferences. A virtual conference is the best way for moms, dads, grandparents and teachers to get information they need without leaving their home. I’m glad I can help make their lives a little easier.”

About Moms Fighting Autism: MomsFightingAutism.com hosts webinars for mothers of children on the autism spectrum and anyone interested in learning more about autism. MomsFightingAutism.com provides tools and services that allow members to connect, support and learn from each other.

About Autism College: AutismCollege.com, founded by the author Chantal Sicile-Kira, provides practical information and training, on-line or in person based on her books.

The Three Models of Autism – One Person’s Perspective

Jackie McMillan, BES

Jackie McMillan, BES

Autism College occasionally publishes guest blogs of different perspectives.  This blogpost is by Jackie McMillan, B.E.S., who has Asperger’s Syndrome. Jackie’s self-directed recovery started in 1976 at age 11.  Since her first inkling that she was autistic in 1988, Jackie has been combining her recovery discoveries with those of other autistics, and with scientific research from a variety of health fields.  Finding no workable model of autism, she has created one that helps others to optimize the gifts, and minimize the challenges of Autistic Spectrum Disorders.  She has drawn on her degree in environmental studies, two years of pre-medical training, and many certifications in complementary health.  Jackie lives by the motto:  If you know things have to change, you might as well enjoy it! For more information about McMillan, visit  ThriveWithAutism.ca  

The Three Models of Autism

Have you ever wondered why some autistics get health and functional improvements from an intervention like food changes, and other autistics just don’t? Or wondered why there’s such a big gap between a good day, and a bad day, for the autistic in your life?

I have a unique perspective on this. I have autism, and at age 11, I spent one month at a wilderness canoe-tripping organization. Through that month, ever-so-gradually, my pain levels dropped, my emotions smoothed out, my thinking and memory improved, my reaction times got much faster, and I was able to make and keep friends. Unfortunately, within two days of my return to my normal inner-city environment, everything slid back to ground zero. I desperately wanted to go back to that amazing quality of life, though, and I was determined to figure out how to recreate it.

The Turning Point:

I turned my life into a science experiment, testing out every factor that had been different between these two environments. Through lifestyle choices, my thinking improved enough that I was able to go through the science track in high school, where I began to chase down my symptoms in the medical journals. No-one ever mentioned autism; my parents felt I had enough to deal with, sans diagnosis and the threats of institutionalization which would have been normal at that time.

In my second year of pre-medical studies, I hit a roadblock. Though the medical journals covered many of the factors which I had discovered could help or hurt me, the medical program was focusing all of its efforts on diagnostics, and drugs. I knew drugs were trouble; in a pharmacology course, I had looked up every drug I’d ever taken. I had all the side effects plus some, and even the intended effects were disproportional.

I took some time off to regroup, and ended up in a different university program, environmental studies. Around that time, a nurse gave me an informal diagnosis of autism. The medical journals were spot on in their diagnostic criteria of ASDs (as applied to me), but the treatments and theories didn’t make sense at all, in terms of my own experiences. Fortunately, other autistics’ experiences mirrored mine: I wasn’t crazy in what I had identified could help, or hurt!

Right now, there are three models of autism.

The Outdated Model of Autism:

The outdated model says that autism is an incurable neurological disorder, and that nothing can be done except to suppress the symptoms in a variety of ways. If an autistic’s health improves enough to camouflage in the school or working world, then the original diagnosis must have been wrong. An unintended result is that this model silences autistics who have experienced some degree of recovery.

The Bio-Medical Model of Autism:

We now know that this outdated model isn’t true, because doctor’s children have recovered enough health function that these MDs have begun treating other autistic children, with some success. These doctors are working with the biomedical model, which says that autism is caused by some combination of malnourishment, impaired detoxification, and immune dysfunction.

The bio-medical treatments are expensive supplements, detox protocols, and immune supports. Unfortunately, it is often carried out in a “one-size-fits-all” manner, without careful study of which impairments might need to be addressed before action can be taken on the others, for each individual. It is also inaccessible to many who cannot afford the treatments, or find a doctor who keeps up with the research, and the results are spotty.

The Five Root Causes Model of Autism:

But there are many, many adults in the autistic spectrum who began with much more impairments, yet are now sufficiently functional that we can participate (at least to some extent) in venues and interactions formerly limited to the non-autistic population. Our collective experiences point to two root causes of autism which are not included in the biomedical model. These are unresolved trauma, and brain and nervous system impingement.

Autistic experiences also point to simple and inexpensive lifestyle choices which can maximize function — or quickly detract from it. This makes a great deal of sense of the variable function and symptoms of each individual with an ASD, from day to day! With different blends of the different root causes in action for each autistic individual, these lifestyle choices vary, but the commonalities are obvious.

Interventions vs. Lifestyle? Or both?

Beyond lifestyle choices, interventions can still make a huge difference to health, function, and quality of life for autistics. How do we tell which interventions will help which autistic? Fortunately, the symptoms themselves point the way. The unique symptoms expressed by each individual can make it much easier to understand which of the five causes might be in action, to which degree, and in what order of precedence, for that specific individual.

But tailoring treatments to the relevant root causes is not enough, on its own. Without the lifestyle changes which support a return to health, functional gains are as short-lived as mine were from that summer camp experience. Fortunately, what is healthiest for people with ASDs is what is healthiest for our entire human race. Health challenges as disparate as hair loss and cancer respond favourably to the same lifestyle changes.

Which straw broke the camel’s back to bring on autistic symptoms can be figured out, and quality of life improved, for every individual on the autistic spectrum. Some repairs are easier than others, and some are more complete. But the potential contributions all of us autistics, with our problem-solving brains, are needed by our culture in this time of change. Won’t you please help us to thrive?