Attitude is Key

July 25, 2018

Rebecca and Jeremy Sicile-Kira, high school graduation, June 2010

 

“Tell him every day that you love him, and that you know he is smart.”

This is what Jeremy, my then 21-year-old son, responded to a mother asking for his advice. She wrote to Jeremy, telling him she had a non-verbal 12-year-old, and she was worried about what he was thinking and how he was feeling. She wanted to know what she could do for him until he was able to communicate his thoughts.

Reading Jeremy’s response brought back memories. Every night for many years, while tucking Jeremy into bed, I would tell him those two important facts.  I never realized the positive impact repeating those words to him every night would have on his self-esteem. I just told him how I felt, just as I would tell his sister, Rebecca.

Jeremy is now 29, and communicates mainly by typing or points to letters on a letter board.  Despite his challenges, Jeremy graduated 8 years ago from high school with a full academic diploma (watch his  commencement speech). Jeremy’s success is no miracle; rather it is a story of hard work and commitment on the part of many people. The one who has worked the hardest is Jeremy. My goal for him was to reach his potential – whatever that was – and to be able to communicate with those around him.  Since graduation, Jeremy has co-authored the book  A Full Life with Autism (Macmillan) and is a gifted artist.

When Jeremy was little, we lived in France and in the UK. We had no early intervention; we had very little help or encouragement from the powers that be. Basically, I was on my own and I had to figure out how to help him. At first I just read to Jeremy and showed him pictures and tried whatever I could to reach him; then I tried different methods I heard about that made sense for him. But I always presumed competence and spoke to him as if he understood everything. I was convinced he did.

For the past 15 years  Jeremy has been able to  type and communicate about his life and what he experienced as a child, what  autism felt like to him, and in what ways the different therapies helped (or didn’t).   I have found out more about what was really helpful to him. Some of his comments are very specific, others are general such as this:

My mom saved me from a life of despair. Her attitude is the key to my success. She made me feel like I could be a success no matter my challenges. Basically, if it was not for my nice mom and great teachers, my life would not be worth living. They believed in me and that has made the biggest impact—more than the type of teaching methods used.

As parents and educators, we spend a lot of time talking about educational methods, but not much about attitude. Yet, when I interviewed people on different parts of the spectrum for my third book, Autism Life Skills, they, like Jeremy, often discussed the importance of their parents’ attitude to their success. Daniel Tammet, author of Born on a Blue Day, has this to say about his parents:

In spite of all my many problems, they loved me unconditionally and devoted themselves to helping me – little by little, day by day. They are my heroes.

The message is clear. Yes, we need the right educational environment for our children. And unfortunately, many children on the spectrum do not get much positive feedback at school or in the community on a regular basis. But if you are a parent, take heart in knowing that your child’s self-esteem benefits greatly from your loving and positive attitude. Knowing his parents are there for him, that they believe in him and in his ability to learn, can make a world of difference to a child’s state of mind.

Proposed ASHA Position Statement: Rapid Prompting Method (RPM)

June 23, 2018

For those interested, the following is my letter in response to the proposed position statement by the ASHA  American Speech-Language-Hearing Ad Hoc Committee on Facilitated Communication (FC) and Rapid Prompting Method (RPM).   The proposed policy can be read here.

 Dear  ASHA Board of Directors:

My name is Chantal Sicile-Kira and I am the author of  five books on autism, an International speaker,  and I am known for my practical advice to parents and educators. Many years ago, I worked for two years at Fairview State Hospital (now called Fairview Developmental Center) and taught  functional and community living skills to the first group of young adults in preparation for de-institutionalized following the passage of the Lanterman Act. I also worked for a short time at Orange County Regional Center as a case manager to families of children with developmental disabilities.

As well, I  have 25 years of experience in non-profit leadership roles related to autism, including two years as Co-Chair, South Counties Autism Regional Taskforce, reporting to the California Legislative Blue Ribbon Commission on Autism, and two years as Member, Taskforce on Transitional Services & Supports reporting to the California Legislative Blue Ribbon Commission on Autism. I am also the parent of Jeremy, a 29 year old who learned academics and  communication skills using RPM (The Rapid Prompting Method), and continues to do so as a fully-included productive individual with a number of trained communication partners.

I respectfully encourage ASHA to withdraw the proposed position statement in regards to RPM.   I am very concerned that The Ad Hoc Committee has refused to consider input or evidence from  users and ASHA members with experience in these methodologies. Such important policy decisions should involve a careful unbiased examination of different viewpoints.  I believe that more research is indeed needed. I also believe that a  professional or parent trained in the methodology is capable of making a decision on whether or not a method is worth trying with a certain  individual, and then verifying success or not on a case by case situation.

I share my experience below with my son’s permission. We hope this will enlighten you as to how for certain individuals, RPM can be an effective method of academic and communication skills.

While doing research on educational methodologies and medical interventions  to write my books, I read about the evidence- based practices that were considered effective. I also learned  about educational methodologies and medical interventions  that did not yet have research evidence, because no research had yet been done. However, some of these interventions were effective with some individuals.  As a parent and autism professional, I believe that there are practices that can be tried and validated on an individual basis. RPM is one of those.

I first heard of RPM when doing the research to write one of my books, Autism Spectrum Disorders (2004 Penguin, Autism Society of America, Book of the Year 2004; Revised-edition 2014 Penguin).  I decided to try it with my son, as it made sense for him and his challenges. Jeremy received direct instruction from Soma Mukhopadhyay (at the time living in LA) twice a month, and I practiced with him every day for half an hour. We did this for approximately two years.

When Jeremy was born he was hypotonic. He needed physical therapy to learn to sit straight, and to use his arms and legs. Every time he learned a new skill (ie eating with a spoon or fork) he needed hand over hand prompting. He had speech therapy as a toddler,  but it was not effective (again, muscle tone challenges).  When he was 5-6 years old he had a supervised home-based ABA Lovaas program. I did ten of the 40 hours of ABA therapy a week  myself, which meant I learned about how Jeremy learned – or didn’t learn.

Jeremy learned to identify and correctly label verbally over 100 pictures. However, if you put the pictures in front of him, he could not give you the correct picture requested at a 80-100% success rate. Since he could verbally identify the objects introduced to him one by one, we knew he had receptive language.  When he was 7 PECS was tried both at home and school. He communicated using a sentence for first time using the “I want… “ sentence strip plus icons in a binder (iPads did not exist till he was out of high school). He had a difficult time choosing the icon out of the binder books and putting it on the strip (vision processing and motor challenges). He never progressed past the “I want”  sentence. Professionals over the years described Jeremy as having challenges similar to a person with CP. He continues to have sensori-motor challenges and visual processing challenges, although these have improved over the years with exercise and therapy.

Therefore, when I heard about RPM, it sounded like something that was worth trying with Jeremy. Success was slow, but obvious. It was not a “magic pill” and it did not cure his autism – but that was not my goal. My goal was effective communication  with a variety of communication partners for use in daily life and with living skills, and to allow him to make choices and decisions,  to blossom as an individual, and have a productive life as an adult.

When Jeremy was in high school he began using RPM at school with a variety of communication partners  trained and supervised by a Speech and Language Pathologist trained in FC who understood the strategy of RPM.

Jeremy graduated from high school at age 21 with a full academic diploma. He auditioned for, and was chosen to give a commencement speech at graduation. During his high school years he was able to participate in general education classes, as well as a class in journalism. In his English classes  and  his journalism class, Jeremy learned effective writing skills and his love of writing to share his thoughts and opinions. He was asked to write a monthly column for the school newspaper.

More importantly,  Jeremy was able to communicate appropriately and effectively when he was sick or in pain. He was able to make choices and life impacting -decisions  and  tell us what he was feeling.   Thanks to learning communication skills via RPM, Jeremy  now has a full  and productive life, fully – included in his community. For more details in regards to his accomplishments since high school, please read his  attached resume. (For those reading this blog post, some of Jeremy’s accomplishments are listed on his website).

Without having a way to communicate, Jeremy would never have been able to tell us about his gift of synesthesia, and we would not have been able to encourage him to follow this path as a career. As you know, the unemployment rate for autistic adults is very high. We are grateful that we found out he has a gift that can help him be productive.

If ASHA’s mission is  “Making effective communication, a human right, accessible and achievable for all,” then why  are some in  ASHA suggesting withdrawing a system of communication that is obviously effective for some people? Clearly more research is needed. But if finalized, the proposed statements would severely restrict ASHA members’ discretion and ability to exercise professional judgment. It would also and would make ASHA’s assertions about wanting to respect “client preferences and values” untrue.

I hope that ASHA does the right thing and upholds the human rights of all, including those who communicate in the manner that my son does.

Sincerely and respectfully,

Chantal Sicile-Kira

 

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

February 14, 2018

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

October 4, 2015

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.

The Affects of Autism in Families and in Partner Relationships

July 27, 2015

 By Chantal Sicile-Kira, BA

Editorial Note: This article originally appeared in Family Therapy Magazine in May/June 2008

Family life  is all about relationships and communication:  relationships between two people in love, parents and children, siblings, extended family members. Yet, autism spectrum disorders (ASDs) are all about  communication challenges, misunderstanding of social cues, and lack of emotional understanding,  thus affecting every relationship in the family. In marriage, if one of the partners is on the spectrum, there will be more difficulties than the usual marital conflicts. Sibling issues are exacerbated  by having an autistic sibling and/or a parent on the spectrum. Communication and social challenges  can also impact the adult’s work situation. Before looking at how to best provide support, a better understanding of the particular difficulties autism infuses into the family unit is necessary.

Autism: It’s a Family Thing

It has been estimated that the divorce rate is in the 80% range  in families with children who have autism (Bolman, 2006).   Despite high rates of marital conflict, many couples do not reach out for  couples therapy.  Lack of respite is a major reason.  For most, finding  a babysitter with whom then can safely  leave  an autistic  child who has  toileting issues, little communication skills, aggression and other inappropriate behaviors on a regular basis is difficult (Sicile-Kira, 2004). Another reason is their lack of belief that they will find a therapist understanding of their particular circumstance and offer any true guidance, thus preferring to use the precious  time away from the child to confide in a good friend.

Marital stress around the child usually  starts when one or both of the parents realizes the child is not developing properly. Couples who have a child who  does not seek their attention in the usual  way  (i.e.,  eye contact, reaching out  for or giving of  affection, searching them for comfort when hurt) find it  hard   not to  feel rejected or unimportant to the child. For those whose child develops normally and then regresses around 18-24 months, there is the added loss of  the child they knew slipping away. Consider also that a couple looks forward to having a child, and each person had his idea of what the expected child will be like.  When the child does not match the expectation,  or regresses, there is a loss and anguish felt by the parent not unlike the stages of grief that people who  lose a loved one experience (Sicile-Kira, 2004).

Other stages of added stress are: getting a diagnosis (family physicians are reluctant to make a diagnosis on a condition once rare for which they have no set treatment plan to prescribe); getting services (a constant struggle); dealing with adolescence (sexual development appears, uncontrolled tantrums can be dangerous as the teen gets bigger); and post high school (the realization that few adult services are available) (Sicile-Kira, 2006).

Keeping  any marriage healthy takes  time, and all too often,  time  gets swallowed up by the autistic child’s needs.  Many children with an ASD   have difficulty  sleeping, meaning that at least one of the parents is sleep deprived. Usually, a role division takes place as one parent, usually mom,  becomes the  autism expert,  while dad works harder to earn money or opts out. Differences of opinion exasperate an already difficult situation – how much time, energy and money is to be spent on helping the child is based on personal philosophy, and in this the couple may clash.   Over time, dad becomes frustrated at the demands of their wives to interact or play with a child who does not know how, and moms become frustrated at the lack of involvements of their partners.

As well, a common pattern among moms is to wonder what they did wrong – drinking or taking medications  during pregnancy, exercising too much, allowing the child to be vaccinated, thus adding  feelings of guilt to an already stressful situation. Also, the couple eventually feels  isolated because they feel it is hard to take an autistic child to people’s homes and are uncomfortable inviting people over.

Sometimes the couple becomes closer than ever, bonded in their shared circumstances. Unfortunately, usually the stress of dealing with autism and all it entails – the constant and necessary advocacy at school, the fighting for services and supports, the added financial burden, trying to handle behaviors and meltdowns at home – becomes a  wedge pushing the spouses  further and further apart. Overwhelmed, stressed and exhausted, the couple’s communication becomes  impaired and even autistic-like, lacking emotion and reciprocity.  This can affect other children in the family.

Grandparents

Unlike the parents who are totally focused on the autistic child’s needs, grandparents are concerned about the effects of autism on their adult children (the parents), other grandchildren and future generations.  They also suffer stress similar to that of parents and siblings. Grandparents  are concerned about the difficult situations they see their own children experiencing. They may provide the autistic child’s parents (who may be depressed, single, or divorced) with necessary support in the way of childcare, financial support and advocacy. But, they may also contribute to stress because of conflict regarding behavioral symptoms and treatment (Hillman, J. 2007). Sometimes grandparents  get involved in the blame-game about the possible causes of the child’s autism, which can be particularly terrible if the couple splits up and there are disputes over custody.

Grandparents may want to help by babysitting, but most do not have the training in behavior management or may not have the physical strength  required to handle behavioral episodes. They may just want to play with the child and spoil him/her, and end up feeling rejected  by the lack of ‘typical’ exchange.

Siblings

The challenges of having a brother or sister on the spectrum can have both  positive and a negative effects on  a sibling. The factors that affect how a sibling adjusts include: family size, severity of the brother or sister’s impairment, age of the sibling at the time of the diagnosis, gender and age of sibling, and their place in the birth order.  The parents’ attitudes and expectations have a strong bearing on how a sibling adjusts.

Many siblings develop a maturity  and sense of responsibility greater than that of their peers, take pride in the accomplishments of their brother and sister and develop a strong sense of loyalty. Siblings of ASD children are usually more tolerant of differences in people and show compassion of others with special needs. However, many siblings feel resentment  at the extra attention the child with autism receives, and some feel guilt over their good health. When little, they may think  they can ‘catch’ autism from their sibling. They may also feel saddled with what they perceive as parental expectations for them to be high achievers. Many feel anxiety about how to interact with their brother or sister, and feel rejected by the lack of reciprocality. Often there is a feeling of resentment at having to take on extra household chores, coupled with restrictions in social activities. When one of the parents has AS, this creates another set of challenges.

An Asperger Marriage 

As Asperger’s Syndrome (AS) has only been recognized since 1994, there are many adults with AS who have been misdiagnosed and treated for  mental illness. Although traditionally 3 out of 4 children diagnosed with an ASD are male, there is growing consensus that there may actually be more  females with Asperger’s Syndrome who have been  misdiagnosed with other conditions. Keep in mind that the information below is  based on  heterosexual partnerships,  although  same- gender relationships occur just as it does in the population as large.

Sometimes the diagnosis of an adult follows  that  of  their child, sometimes it follows marriage therapy, and sometimes it is problems at work that  finally lead to a diagnosis. A spouse  may seek out a therapist  with complaints of  a cold, uncaring,  and unemotional husband, although she may have chosen her mate because he appeared  calm and reliable. An AS adult may appear depressed because of  the flat affect, monotone and lack of direct eye contact.  Others may appear controlling and rigid, insisting everyone in the household stick to the same schedule and participate in the same activities, due to a need for sameness and inability to empathize. It is this lack of  empathy that has the biggest impact on the partner with AS ability to understand their spouses, as well as any children,  and to recognize that their needs, perceptions and thoughts are different from their own (Aston, M. 2005).  Poor empathy in the AS parent may contribute to behavioral and psychological problem in the children. However,  a parent with AS, may be better able to better understand and cope with the a child who has the same diagnosis.

Anxiety and stress can run high in adults with Asperger’s due to the difficulties in communication and social interaction. Most lack what we think of as ‘common sense.’ Body language and subtexts of intonations are lost on them, so that they may hear the words that were spoken, but not understood the real message or context. Persons on the spectrum can be honest to a fault and  may make inappropriate comments in public, thus appearing rude and uninterested in social situations.

These same communication problems effect a person’s ability to keep a job or move up the corporate ladder. Temple Grandin PhD, author of Thinking in Pictures and animal scientist, often speaks about how she almost got fired from her first important job because she kept writing letters to the CEO telling him how he could improve the company. She had no clue that the hierarchy at work dictated how, what, and to whom you communicate. Often times when a company is downsizing, the people laid off are the those who did not establish social relationships at work.

Physical demonstrations of affection can be difficult  for those  adults who  suffer from sensory processing disorder  and are overly sensitive to touch. Often the AS spouse is surprised that his partner and  children are feeling unloved and unsupported, not realizing that his behavior does not show the support and love he says he has for them.  The inability to read non-verbal communication makes it difficult  to differentiate between when their partner  wants to have intercourse or just a snuggle.  Some couples report that the partner on the spectrum insists on routine even  in  sexual activity (Aston, M. 2003).

Finding out that a partner has an ASD can provoke different feelings. One of them is anger at missing out on aspects of a marriage that the partner was looking forward to. Another feeling is relief that the partner is not trying to shut the other one out, he is just unable to provide the emotional response needed (Slater-Walker, C., and Slater-Walker, G. 2002). For children the reaction is similar. The positive aspects of having a spouse with Asperger’s can  include  the realization that they are in most cases loyal, honest and dependable.  Those who are diagnosed as adults who knew they were different feel empowered and relieved once they receive the diagnosis, as now they have a starting point for finding strategies that are helpful (Carley, M. 2008).

How  Therapists Can Help

There many ways in which therapists can help the family unit. For all those who need more information or need access to a support group and are not yet hooked into recourses, the Autism Society of America has local chapters that can be helpful. www.autism–society.org

Couples need to be encouraged to acknowledge  and face the emotions of the grief cycle (i.e., denial, grief, depression, anger) and the loss of the child they were expecting, and to work through these emotions. Misdirected anger is often released at school personnel in Individualized Educational Program (IEP) meetings or taken out on service providers, thus alienating the very people who are there to help them.

Encouraging couples to regularly schedule time together without the children is important. However, this suggestion is useless  unless the therapist can support  them in devising  a practical plan for  finding the respite help they need.

The lack of qualified babysitters can be a very real obstacle to finding  time together or continuing therapy. Working on good communication skills and  looking at how they can support each other is important. The couple  needs to realize and accept that their partner may react differently to having an autistic child and a different viewpoint when it comes to how much effort and money to put into treatment, as well as what kinds of treatments to pursue.

Encouraging dads to  take a more active role  with agreed upon treatments, generalizing some of the skills the child has learned through his ABA (Applied Behavioral Analysis) program, helping with structure, limit setting and discipline can be very helpful. For this to occur, dad needs more information and training. Perhaps coming up with some dad-oriented informational materials could be useful. A good on-line support group for dads is  http://www.fathersnetwork.org/

In the same way, providing available and willing grandparents with information and a little training that can enable them to step in and give the parents a few hours of respite can be beneficial to all involved. Explaining to them why their grandchild acts they way they do (i.e., sensitivity to sound and light, not being able to make sense of the world, lack of communication skills) is helpful.  Suggesting they  offer to  do a specific task, such as  teaching the child to catch and return a ball or play a simple game, or  teach a simple learning skill which needs much repetition and positive reinforcement, can be helpful. In this way they could  understand both the effort needed and the excitement to be had in teaching their grandchild an interactive skill. Grandparents will feel empowered knowing they are making a positive difference in the family’s life, the parents will feel supported and more relaxed. Information geared towards grandparents can be found on the  Grandparent Autism Network  at http://www.ganinfo.org/organization.aspx

To the non-autistic sibling, knowing that they can ask questions and discuss their feelings about their sibling and autism is important. By helping parents understand the needs that siblings have is helpful,  as sometimes these get lost in the shuffle. The non-autistic children need some quality time   alone with their parents on a regular basis Parents need of be aware of the sibling’s feelings in order to develop strategies of support  to help him/her  adapt.

Providing the siblings with information about autism  (such as why their sibling acts they way he does)  in a positive manner at their age level is necessary, and there are many children’s books available now that that can be very helpful. Joining a support group for other siblings of special needs children can be extremely helpful so they do not feel they are the only ones going though this, see www.siblingsupport.org/sibshops for more information.

The siblings need to be reminded often that they have just as much of their parents’  love as their autistic sibling, even  if  parents may need to give more time and attention to their brother or sister with autism. It is important that the non-autistic sibling have a private autism-free zone  to call their own, and a secure place to keep their precious objects. They also need to see that the sibling with ASD is given consequences if he wrecks their things, and that he is expected to improve his behaviors over time. For children of an AS parent,

For a mixed marriage between an  Asperger and a non-autistic partner  to work,  each spouse  needs to recognize the differences they have and  why. If the partner  with Asperger’s  refuses to  acknowledge that his behaviors and actions towards his/her partner are unacceptable, then  there is little hope for the relationship.

Understanding the deficits, reinforcing the strengths and  acknowledging the needs of each partner is helpful. Teaching the willing AS partner behaviors that are important to his spouse (such as greeting her  when he walks in the house, asking about the partner’s day at work, giving her a kiss) is effective. Research for my new book  (Autism Life Skills to be published by Penguin October 2008) indicates that those willing to learn can be taught expected behaviors and strategies. Some of these include teaching them the ‘hidden curriculum’ (i.e., what non-autistics automatically learn and take for granted, making lists for visual learners).  For more social competence at work, having a mentor there who can explain the non-autistic expectations, and writing a list or drawing a map of the hierarchy and expected communications at each level can be well-worth the effort. GRASP – The Global and Regional Asperger Syndrome is a good on-line network for people on the spectrum www.grasp.org  Information for  partners and families can be found on these two websites : Asperger Syndrome  Partners & Individuals, Resources, Encouragement and Support. www.aspires-relationships.com ; Families of Adults Affected by Asperger’s Syndome wwww.faaas.org.

Author Biography

Chantal Sicle-Kira, BA is President of  Autism Making A Difference,Inc. which provides consultation, training and seminars on ASDs. city guides Satellite map She is the author of Autism Spectrum Disorders (2005 ASA Outstanding Book of the Year), and Adolescents on the Autism Spectrum Disorder, both published by Penguin. Her third book Autism Life Skills will be published Oct 2008.

 References

Aston, M. 2003. Aspergers in Love: Couple Relationships and Family Affairs. London: Jessica Kingsley Publishers.

Aston, M. 2005  “Growing up in an Asperger Family.” Counseling Children and Young People (CCYP) Journal.

Autism Society of America, 2008. “Family Life.” http://www.autism-society.org

Bolman, W. 2006. “The Autistic Family Life Cycle: Family Stress and Divorce.”  asa.confex.com/asa/2006/techprogram/s1940.htm.

Carley, M. 2008 Asperger’s from the Inside and Out: A Supportive and Practical Guide for Anyone with Asperger’s Syndrome. New York: Perigee.

Hillman, J. 2007. “Grandparents of Children with Autism: A Review with Recommendations for Education, Practice, and Policy.” Educational Gerontology, P 513-527.

Sicile-Kira, C. 2006. Adolescents on the Autism Spectrum: A Parent’s Guide to the Cognitive, Social, Physical and Transition Needs of Teenagers with Autism Spectrum Disorders. New York: Perigee.

Sicile-Kira, C. 2004. Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Asperger’s Syndrome, Pervasive Developmental Disorder, and Other ASDs. New York: Perigee.

Slater-Walker, C., and Slater-Walker, G. 2002. An Asperger Marriage. London: Jessica Kingsley Publishers.

 

 

 

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

June 7, 2015

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

June 4, 2015

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.

 

Champions and Losers within the American Revolution

March 6, 2015

Champions and Losers within the American Revolution Because a lot of different parties influenced the Revolution was a crucial occasion for that North American country. As in-all conflicts, the American Innovation led to & “losers” champions and ldquo;. The Patriots were the most obvious champions while in the Revolution; they obtained the right to rehearse rep government freedom, and lots of new civil rights and liberties. Continue reading »

How To Start A Great New Year

January 1, 2015
Happy New Year!

Happy New Year!

My son, Jeremy, is a New Year’s baby. From the moment I was given Jeremy’s due date – January 10, 1989 – I was admonished by my sister the nurse practitioner to make sure not to go into labor during the holiday season.

Whatever you do, don’t give birth on New Year’s Eve or New Year’s Day; that’s the worst time to have a baby – the hospital staff who are working either don’t want to be there, are getting drunk or are hung over.

We are living in Paris at the time, and  we are invited to a New Year’s Eve party being thrown by other expats in their  loft in the 6ieme  arrondissement. We don’t own a car, so we take the metro.  Obviously, I don’t drink any alcohol at this point, but I still try to dance as much as my 8.5 months pregnant belly will allow me to.  You can stop me from drinking, but not from dancing!

Just after midnight and after ringing in the new year, we decide to head home, about 2 miles away in the 12th arrondissement. The metro and the bus have stopped running for the night,  and  there are no taxis to be had, this being New Year’s Eve. We start walking in the general direction of our apartment,  still  hopeful of catching a cab after it has dropped off a client. After about a mile, we are walking in front of the hospital where Jeremy is supposed to be born in ten days. There is a park bench and I sit down.

Let’s stop here; I’m too tired to walk and it’s conveniently located in case the baby decides to come early!

Little did I know… Another half hour goes by, still no taxi , so we walk  all the way home. We are in bed by 3:00 am. A few hours later I feel what I presume to be the start of labor pains.  I call the hospital and describe what I am feeling, and they tell me to come in to the hospital NOW. I wake Daniel up.

We have to go, we are having a baby! I need to get to the hospital!

I make him a cup of expresso, two shots, because he is not a morning person.  I take a shower.  A woman wants to feel clean and look nice when giving birth (an oxymoron, I know).

When I get out of the shower, Daniel is not getting ready – he is putzing  around – putting away clean dishes, straightening the silverware drawer, emptying the garbage, all at a leisurely pace.  I am not feeling calm,  I yell:

What are you doing??? We have to go to the hospital!

He replies,

Yeah yeah, relax,  The baby is not due for another ten days! Calm down!

We go downstairs to the street to get a taxi. We realize we may have a problem getting one as it is early New Year’s day, about 7:00 am, and because according to movies we have seen, taxi drivers do not want to pick up pregnant ladies about to give birth. They don’t want their cabs messed up. We spy a cab and Daniel flags him down and I hide my discomfort and we tell the cab driver we are going to the hospital to visit a sick aunt. He takes us to the hospital.

Meanwhile, all I can think of is what my sister told me:

Whatever you do don’t have a baby on the New year’s Eve or New Year’s Day!

Sigh. Some things you can’t control. When we get to the hospital, the nurse checks my vital signs and how much I’ve dilated, and she says

Yup, it’s happening today; I’ll tell the midwife you are ready!

Daniel drops the bag he was carrying – the bag that you are told to have packed two weeks before you are due to go to the hospital – and he exclaims,

Oh no, I can’t believe it; I thought this was a dress rehearsal, I was just humoring you!

I could have killed him on the spot if I hadn’t been in so much pain.

Needless to say, Jeremy was born that day despite it not being a good day to be giving birth in hospitals. Everything went well.  It was a wonderful start to a New Year, for which I am forever grateful.

 

Frog Legs for Breakfast – Camping a la Francaise

December 30, 2014

People  often  ask how did I build the character I have to  survive all the challenges I’ve faced as a parent of a young adult with autism, including ‘negotiating’ with the systems in place to help us?  The answer is simple: I survived camping.

chantal snake

The word ‘camping’ conjures up different images for everyone. Mention camping to my husband   Daniel –  whose mother was  a  Puerto Rican from Manhattan and his father a Romanian from Detroit-  and here is what he pictures:

A 1960’s green station wagon, parked in a rest stop,  close to  flushing toilets, hot running water, and a Greek diner. His mom and sister sleep in the station wagon where the seats have been folded down, a mattress laid on top to make a nice cozy bed with blankets and fluffy pillows. Screens cover the open windows so the bugs can’t get in. Daniel and his father sleep in a 4 person tent pitched nearby. In the morning they rise and stretch, refresh themsleves in the cozy warm rest stop bathroom and get dressed. They drive to the closest Greek Diner or Howard Johnson, sit in a booth  and have a nice warm breakfast and fresh coffee.

My parents were French Alpinists before becoming French immigrants on Staten Island. They treked in the Alps carrying what they needed to survive in the wilds and sleeping in two-man  pup tents they had sewn together.  Camping meant battling the elements.

So my visual of camping is somewhat different than my husband’s. I see six children covered in soot sharing three small faded old handmade pup tents in a former cow pasture –  evidenced by the cow patties that are left behind – surrounded by woods, 15 miles away from any other humans.

My father was a project manager for a construction firm in New York.  Eventually he was  assigned overseeing the construction of a power plant  in Louisville, Kentucky.  During the school year he commuted back and forth from Staten Island to Kentucky. But during the summer, my parents would pack us all up and take us camping for two months in the Louisville area so that we could be together. For two months each of  three summers, the cow pasture is home.

In the middle of the field is a one room old, rickety wooden shack where maman and papa sleep and where we all take cover during scary lightening and thunderstorms punctuated by torrential downpours of rain which reduces the cow field (and cow patties) to a mud pond. We keep our supplies in the leaky shack  and every other Sunday a rural roman catholic priest comes to celebrate mass for us (now that I think of it, maybe he was giving us last rites).

At a safe distance from the shack and tents is the one-hole wooden outhouse all eight of us share. There are no lights, and when use the outhouse we take a flashlight even in daytime to make sure no snakes are waiting for us in the hole where we sit to do our duty.

There is a large campfire maman uses to cook and heat water  to fulfill the basic needs of eight people, and next to it a picnic table where we eat. The pots on the campfire are old, and dented, stained black from the soot  which emenates from the  campfire which is kept lit 24/7 when it is not raining. Soot from the fire covers everything we have at the campsite. The only running water besides torrential rains is the stream below where my dad takes us frogging on moonlit nights.

The worst part about camping is not the frogging; it’s the sleeping in the narrow short pup tent. Every night I crawl in to my side of the tent, the left side, careful not to knock down the short pole in the middle of the tent holding up the ceiling. The tent is very low to the ground and the tent’s ceiling at it’s highest point is only 12 inches away from my face if I am lying on my back.   As a little girl, I can handle snakes but I absolutely abhor spiders; I have nightmares about them, usually the black widow sort.

Unfortunately, every morning when I wake up, the inside surface of  my tent which I share with one of my sisters,  is full of between 10 to 20 Daddy Long Legged spiders. Up close, these spiders look like one giant eye with  8 skinny, long legs coming out of that eye. Here is my first dilemma every morning upon waking up: I must get out of my sleeping bag in the narrow short tent without touching the canvas siding of the tent, because if I do the spiders will start moving.  And I am certain they will crawl all over me.  The second dilema is deciding: Do I stay face-down  as I carefully crawl out from the tent backwards so I can’t see the spiders but I imagine  them jumping on to my back  as I try to leave the tent?  Or do I roll over on to my back and  shuffle out of the tent feet first, with my eyes wide open so I can keep my eyes on the spiders, terrorized that at any moment one or more of them will jump on me?

My siblings, who know about my fear of spiders are relentless. Every morning before eating breakfast we must  air out our sleeping bags and empty the tents. And every morning one of them, ususally my older brother, grabs a spider by one of its legs and chases me around the campsite. I quickly learn to run fast, very fast. Once I am so terrified that I run all the way to the closest dirt road a quarter of a mile away before realizing I am wearing nothing but my big white panties. No matter that there is no one around for miles to see me, I am mortified.

After the spider chase torture ritual every morning, it is time for breakfast cooked over an open fire. If  we are lucky, we have frog legs for breakfast. There is a steep path leading to the stream below, which becomes a mudslide whenever it rains. At the bottom of the path, an old wooden rowboat is tethered to one of the trees that overhangs the river.  The rowboat is so old  that most of the  paint is peeled off, but you can tell that at one time it had been green. The water in the stream is murky and the sun barely ever reaches through the large tree branches that hang over it, tree roots sticking out making perfect resting places for all types of reptiles and insects.

Occasionally, when the moon is bright my dad takes take us ‘frogging.’ There are parts of frogging I really like: getting into the rowboat at night with the moon shining and fireflys  glowing,  insects buzzing, and feeling like we are going on a real adventure.  What I don’t like is the killing the frog bit. The idea behind frogging is to have frog legs for breakfast. As our parents never cease to remind us,

Papa: “ Cuisses de grenouilles, Frog legs are an expensive delicacy served in the finest of of restaurants in France. We are so lucky to have all these delicacies hopping around  for free, waiting to be harvested for our dining pleasure.”

I never can understand why my friends recoil when I told them about my frogging experience.  I imagine they  haven’t had  the good fortune of tasting frog legs cooked over an open campfire.  They didn’t know what they are missing.

The oldest four children climb into the rowboat with my dad, and we each have our job to do. Two of us row the creaky old boat, one of us  holds a flashlight and shines it over the river looking for frogs, one of us carries the burlap bag, and my dad holds the pitchfork. The pitchfork is smaller that your regular farmer’s pitchfork,   it looks more like  the miniature pitchforks sold with devil’s costumers around Halloween. But the prongs on this pitchfork  are real metal, thin and sharp.

Before we get into the rowboat, my siblings and I fight over who gets to do what. Everyone’s favorite job is holding the flashlight. It beats bagging the frogs and is less strenuous than rowing. It’s dark on the river, with overhanging branches of the trees blocking any moonlight. I like being in control of the flashlight because then I can shine the light  and  actually see – if I want to- all the weird things out there making noises. Whoever controls the flashlight controls what everyone sees because it is pitch black on the river.

We all sit quietly in the rowboat and wait till we hear the croaking  of  frogs and then  I turn the flashlight on the frog and aim the beam  right in  his eyes. The frog is blinded by the light, and he sits frozen, unable to move. My sisters  row the boat closer to the poor frog as I keep the beam of light steadfastedly aimed at the frog’s  eyes. Papa lifts the pitchfork up and spears the frog in his belly and my brother quickly moves in with the burlap bag and voila! in the burlap bag he goes! We always catch at least a dozen, we are 8 people and a pair of of frog legs  does not provide much nourishment – as delicacies rarely do.

Yes indeed, camping is good training for facing your demons.

 

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