Foreword

     Jackie has shared her story in a very personal way in the hopes that other parents will understand the journey toward independent living for their son or daughter with autism better.  Her story will also be of help to parents of children with other disabilities.  She felt she was prepared, being a professional in the field, to help her son attain the goals she so desired for him and one that he seemed to be moving towards in high school.  However, she found that in spite of knowledge, she just didn't have enough and the emotional part of "giving up" her son along with other crises in her life almost prevented her dream for Trent from being realized.

     Although the job of making this happen became Jackie's, it also involved a group of people who became the support team for Jackie and Trent.  Jackie talks about needing to have positive mine-set and belief in people and their willingness to help.  She is philosophical and practical in her approach.  She refused to become mired in her own difficulties, but in the process found ways to protect herself and her family.

     As we look at the current situation for children and adults with autism of all ages, we realize how far we have come in the last quarter of a century.  But we do become uneasy when we hear about budget cuts and agency cut-backs when we fully realize how little there is for some people.  We also know the enormous challenges that many people face today.  Adults with autism are often discriminated against in a variety of ways, including the job force and in leisure activities.  Their cautiousness and inflexibility can some times seem like insurmountable barriers.  Their needs can appear to be so great.  However, their needs are not so different from those of others.  They may require more time, more patience, more planning and more understanding.  They often do not respond well to time or social pressure.  Each individual with autism requires a commitment and willingness from those who interact with them to individualize and learn about them.  Sometimes people with autism can advocate for themselves, if we listen.  Often they need someone to help them.

     Quality of life that Jackie talks about in her book means independence.  It means choice and growth.  It means being comfortable and being accepted.  It means being treated as an individual.  Jackie wanted this for Trent and never gave up, even when he appeared to be having difficulties.  She tried to see things from his perspective.  She sought help when she needed it.  She never gave up.  People who work with individuals with autism will gain an inside perspective of family's dream and struggles.  This insight will help them be better able to provide for people with autism.

     The second part of the book addresses many practical ideas for service providers.  Parents with children with autism often don't have the opportunity of the natural transition of emerging independence that parents of typically developing children have.  Most parents express concern and adjustment problems as their children become young adults and go out in the world.  However, they have had practice as their children grew older allowing them more and more freedom and choice.  They often have some idea what the challenges might be.  For many parents with children with disabilities, and especially autism, one or more parents or some family member has been a facilitator, advocate and interpreter for the child for years.  Extra vigilance has been necessary throughout the child's school years in all aspects of the child's life.  There hasn't been much training in how to be a parent of an adult experiencing "independent living" or how to obtain this goal.  In fact, the goal of independent living looks different for each individual and family situation.  Hopefully, the young adult has learned to be an advocate along the way or will learn to advocate as he becomes increasingly sure of himself in a variety of settings.

     Parents all have hopes and dreams for their children.  These have to constantly be adjusted as the child's individual talents and skills become apparent.  This is an emerging process.  Parents of children with disabilities are often so caught up in the daily life of the child that they may not have had much time to even articulate what these dreams and hopes might be or adjust their original thoughts about this.  Jackie states that she had the dream of "independent living" for Trent for many years.  However, she hadn't realized how difficult realizing that dream would be for everyone.  Her story suggest that we need to consider ways to help families go through the "transition" in a more gradual and natural way as the child is growing up.  Each step toward independence and self advocacy-including choice will help.  Certainly having a broader range of options for adults and preparing families throughout the secondary school years for the transition are vital.

     Throughout these crises years for Jackie and Trent, several life changes occurred at once for Jackie's family.  Families have many demands on their personal and financial resources.  The larger circle in her community and family helped her through this difficult time.  She had to learn to make some significant personal changes in the way she approached her life and what was happening to her.  She describes this well.  Her story makes us well aware that families need help from people they can trust.  At some times they need more help than others.  As families leave mandated school services behind the challenge of finding or creating opportunities often becomes overwhelming.  This family's story makes all of us realize how much more needs to be done throughout the school and adult years to provide meaningful supports and services for individuals and their families with disabilities and how reaching the goal of "independent living" really means understanding the interdependence of us all.

     Nancy J. Dalrymple, Autism Consultant

Kmart

     Several months after Trent had been living independently, he started a job at Kmart.  Trent needed support to learn his job.  Jason had become familiar with Trent’s strengths and needs and was hired along with Trent.  Both Trent and Jason worked in the lay away department. 

     After Christmas, Trent’s supervisor wanted both of them to work in processing shoes.  The job was to pull out paper, arrange the shoes a particular way in the box.  Trent did not like the task.  After he worked at the job for a few days, he became very upset and Jason had to take Trent home.

     The supervisor and co-workers at Kmart appeared to understand so I suggested that Trent’s job coach explore the option of a different job for Trent.  The supervisors at Kmart were extremely understanding and supportive.  They offered Trent a job in tagging clothing.  I will always remember that day and the blessing Trent and I received.

Trent Is Accepted

     I will always remember that day at Kmart as I waited anxiously for Jason and Trent to arrive.  We planned to meet with the team to determine another job for Trent.  I had reflected back on Trent’s last day at the job.  The job task assigned to him was inappropriate because he was unable to work through the task of shoe processing.  The task involved multiple steps that were confusing.  Trent became very upset with the task.  Jason reported to the supervisor over a month ago that the job was not right for Trent.

Barry Whaley, Director of Community Employment

     Barry, the director of Community Employment, Troy, the job coach, Jason, Trent and I had arranged to meet with Trent’s supervisor, and the district manager.  Our plan was to explain how a nontraditional job would be appropriate for Trent. The team explained the strategies for carving an ideal job for Trent.  We determined Trent would require these supports:

• ·        Flexible working hours,

• ·        One particular repetitive task that was not time dependent for its completion

• ·        Jason hired along with him for support.

Job Coach, Troy Klabor

     As I waited for Jason and Trent I prayed for divine intervention to take place in this meeting, “I will accept whatever the outcome becomes.  I trust a solution is found.  If it is meant for Trent to have the job—then I accept.  If not, then I will look for the next step.”

     As the meeting began I sensed Trent was a little uneasy, but he appeared cooperative.  Trent’s supervisor welcomed Trent back.  Trent responded with a smile as he greeted her quietly.  Sharon asked us to enter the meeting room and have a seat around the table.  The conference room appeared to be too small to hold a meeting, but there was a table and enough chairs for everyone.  When Barry and Troy arrived I introduced them to everyone.  Shortly thereafter, the district manager arrived.  Troy, Trent’s job coach opened the meeting by asking me to tell the team our purpose for meeting.

     I summarized the issues of Trent’s last day at work that led to Trent leaving early.  Jason then explained in further detail Trent’s upsetting experience with the shoe processing job task.  I then explained that Trent possibly failed at the new task because he needed an introduction to the task prior to starting the new task.  Trent sometimes needed several short periods of working on the task in order to adapt to the task and the new part of the building.  I explained that Trent was not prepared for his last job.  I also explained that Trent needed his employer to understand his ability to hold a job was dependent on flexible work hours, and a job task tailored for his unique needs for repetition.  He required work that was not based totally on his productivity.  Rather, he needed a task he could do repetitively and where time dependency was no an issue.

     Everyone sat still.  Not a word was spoken from anyone for several seconds.  Those seconds seemed like minutes.  I felt a gentle calm flow like a continuous warm stream through me.  My heart beat softly. I thought of the payer I said earlier and I was grateful.

     Barry asked the district manager if there was a job task at Kmart that was repetitive and not time sensitive.  We were seeking a task that did not have to be completed within a time frame but a task that needed to be completed.  Trent’s supervisor’s eyes suggested that she was not aware of any job task like that.

     She asked the district manager if he had any suggestions.  Barry broke the ice by interjecting, “No pressure on you.”  We all laughed.  Trent sat still and appeared to be carefully listening to the dialogue, by offering quick gazes to Barry and Troy then gazed back down to his hands again.  The district manager answered, “We could try Trent in soft clothes processing.  He could tear the plastic from the clothes and tag clothes.”  Barry asked if we could see the area where Trent would work and the kind of work he would do.

     After we examined the work setting, we met back into the meeting room to discuss the hours Trent would work.  I felt a sense of peace and thanked God in a silent prayer.  I thanked every participant at the table for meeting.  Barry turned to Trent and asked if he wanted to come back to work at Kmart.  Trent responded, with a quiet raised voice, “Yes”, then he reached over and gently placed his head on my shoulder and reached out for my hand.

     Trent and I were granted a blessing and I was thankful. 

Security

     What does security mean to you?  Take a look at this list.  Consider what brings security to you.  Which ones do you utilize to ensure that you have security in your life and your young adult’s life?

• Predictability  in activities your young adult participates

• Persons who associate and instruct your young adult,

• Services and quality in your young adult’s life.

• Being loved

• Good health

• Independence (yours and your young adult)

• Autonomy

• Belonging

• Free choice

• Love

• Financial security that will support your young adult’s quality of life now and after you die

     In order to focus and achieve these securities, one must recognize the myths that are negative messages we often hold on to and believe.  I want to share with you some myths I once believed to be true and have heard other parents say about independent living.  These myths are synonymous with fear.  Essentially I recognize that we parents have certain fears about letting go of their young adult.  After experiencing 20 plus years of providing care, guidance, and protection for Trent, I know how difficult it was to surrender to an unknown new way of life.  If I had listened and believed some or any of these myths, independent living would not have become our reality today.  Lets look at a few:

• Independent living cannot work without an agency

• Independent living won’t work for my daughter

• It will mean changing everything

• The state (not parents) should provide an agency to arrange independent living

• Let’s just wait until our son is ready

• It is too expensive and where are we going to get the money

• It’s too risky, and I do not trust people

• I’ll think about it later or a few years from now

• Somebody would have started it before in our community if it were any good

• We don’t have the time to design it

• Not now

• What’s the rush?

• Let’s not move too fast

• My son is too disabled, he has autism and cannot communicate his own needs

• It’s just too soon to start independent living

False Sense of Security

     Some families may say they want independent living for their adult, but actually choose to keep their son or daughter at home because they are unsatisfied with adult services and long waiting lists.  Families may choose the safer route even if it is painful rather than venturing into the unknown.  The family may become so overwhelmed by the prospect of what might happen if they were to choose independent living that they cannot even begin.  Their primary motivation is the desire to avoid pain or fear and to maintain their comfort and safety as they know it.

     Personally, I felt all the fears and pain of surrendering Trent to independent living.  However, I was motivated by risk to let Trent go, and to provide freedom and solitude for both of us.  There are many families for whom safety means keeping their child from working in order to have the maximum Social Security Income (SSI) in order to pay basic expenses.

     How we define safety depends on our personal values as well as where we are in our lives.  Our pattern for managing this safety through our many life changes is uniquely our own.  For example, I am excited by change as long as it is good change.  How does your family intend to manage safely through your life changes?  How do you intend to manage safety for your young adult through his life changes?