Capabilities vs Deficits

Capabilities vs Deficits

About my BLOG:  Capabilities vs. Deficits

I write a blog titled, Capabilities vs. Deficits to emphasize the importance to look at what a person can do over and above that which it seems he cannot do. Though this seems obvious, often the latter is more of a focus in planning. I also examine the important issues that effect teens and young adults with developmental disabilities. It is important to know how we (parents, advocates, and professionals) can support them to become more stable as they navigate through the sea change of life transitions. My intention is to highlight the possibilities that can increase their capability and enlarge resiliency to life’s challenges. This blog is especially written for teens, young adults, their families, and advocates in their life. The examples or stories I write about are real from my experiences and research, only names have been changed.

I appreciate you taking time to read my blog. I have prepared this content just for you. I enjoy talking about the tools that help people with all disabilities and their families connect and live their lives more fully. I invite you to give me input and feedback.

Dr. Jackie

www.drjackiemarquette.com

Jackie@drjackiemarquette.com

There are Two Sides of Transition

The school transition years for adolescents and young adults are often met with resistance and uncertainty for both the individual and the family. As students age out of school, we parents are often in a state of urgency for solutions that will direct our paths. More youth than ever before are moving through the educational system and in need of services and what I have named “broad creative supports” to help them move into post high school life.

Unfortunately, the school transition programs and plans are grossly inadequate, overly focused on test scores because of NCLB. Students with autism and other disabilities must have options of exposure to community settings, self advocacy, self determination and work skills. Without these, there is little promise held for the second half of transition, after high school ends.

Transition has two faces, the school side and post high school adult life. We parents question, “Where will this school transition plan carry my son? or my daughter? What does the other side of transition hold for my son? or our family?” I know this well because I have lived through the many negative and uncertain effects of the transition phase with my son Trent who has autism.

There is good news among all this uncertainty. Daily living for our son or daughter can be filled with increased activity and new experiences. Life can become enriching and more enjoyable than all the school years combined. How do I know this? Because I have lived it and I have heard the stories of those who have made it work, despite all the obstacles and setbacks. They shared with me their choices, the actions to guide their young adult, and the beliefs that drove their efforts. Indeed, successful outcomes do not just happen, it requires a combination of good funding supports, positive energy in planning, making decisions, and commitment toward action and most important people who acknowledge their challenges.

After high school ended, Trent and I endured and overcame the challenges of his isolation and obsessive behaviors that increased because of significant changes and crises within our family and in his own life. Despite the isolation and obsessions, and with help from several community coaches, Trent pursued interests and involvement in daily community living.

Trent is now 33 years old, has been successfully living in his own house with a roommate and friend for over 10 years, and has held a 20 hour a week job at Meijer a large retail store for 8 years. He is also an award winning expressionistic artist.

We had hundreds of set backs and times where I asked “Where do I go from here?” I can tell you the solution is mainly due to “broad creative supports” and having his challenges and capabilities acknowledged by others. I offer a process that helps people get unstuck and get moving in life, that is what this face book page is all about.

I appreciate you taking time to read my blog. I have prepared this content just for you. I enjoy talking about the tools that help people with all disabilities and their families connect and live their lives more fully. I invite you to give me input and feedback as I am writing a book on Using the Capability Approach.

I want to here from you.

Dr. Jackie

www.drjackiemarquette.com

Jackie@drjackiemarquette.com

Copyrighted© Jackie M. Marquette Ph.D., Jackie M. Marquette Ph.D., June 16, 2010

The Journey with My Son

Early Childhood to Adulthood

Trent is a 33 years old autistic man. He is a wonderful example of how someone with autism can grow and overcome challenges to live a full complete life with a positive self-image and a community member. Yes Trent has autism, but I say autism does not have control over him. He has grown personally, matured, and reached living life beyond anyone’s previous predictions. Today he is employed part time at Meijer (with supports) and has been for 8 years. He lives independently with a friend who is his roommate. He is a brother, a son, a nephew, a cousin, a neighbor, and is an artist who has friends in the art community.

Painting has positively changed who Trent is. He is an expressionistic artist who paints what he cannot say. Today Trent travels to art shows, has won art awards, and exhibits at national disability conferences.

The Unknown Path

Trent is a middle child, with a brother Todd three years older and Travis his brother three years younger. Trent was born in 1977 just a few years after P.L. 94-142 was passed which entitled children with disabilities a right to have public education. At the time, I didn’t know how important the passage of that law was to him.

When I first held him in my arms, I heard a voice in my heart say, this baby is a special gift to you, ‘you will care for him the rest of your life’. I recall thinking abruptly, why would I think such a thing, ‘care for him the rest of my life’. The following months, I remember people saying, how beautiful a baby he was, yet very quiet.

When he was 10 months old, Trent smiled, said a few words (ice cream, moma), and imitated his oldest brother Todd. Trent made the rmmmmm…. sound of his matchbox cars on the sofa while looking up to his brother Todd as the leader to show him how. Then around 18 months of age, everything changed. Trent began to get out of his bed and sit in the dark alone, rocking on the sofa. When I turned on the light, he just kept rocking as if he ignored that I was there to comfort and hold him.

Trent was diagnosed as autistic-like at the age of 3. Thereafter his doctors labeled him autistic. During the school years, he was placed in a self-contained classroom while being mainstreamed (a term used in the 80s) into regular education classes, mostly music and art. During the 80s there was not much information about alternative therapies except for behavioral interventions. Trent did however attend the Louisville School for Autistic Children providing him behavioral therapy.

With limited receptive and expressive language abilities, he had tantrums daily. I kept a journal and one day I wrote, Trent is having his 7th temper tantrum today. There are many memories of struggling to be a mother to his brothers and involving Trent into everyday family activities, one was eating at the table with his family. Outings were was most difficult with my three small sons. Some scenarios I recall:

1)    When Trent was three years old, he was terrified of the sliding doors at the entrance to most grocery stores. I remember practicing with him over and over again when I was able leave his brothers with their dad or their grandmother. With gentle supports and consistent practice, he eventually learned to walk through the sliding doors with ease. I recall how incredible the relief became as it was important for me, a mother with three small children to manage grocery shopping.

2)    When my oldest son Todd was in cub scouts. I became a Den Mother, so all the scouts could come to our home after school. I had my mother’s help during those meetings with the wild hungry boys. I recall going to award ceremonies and other scout outings. When Trent was with us, I sometimes missed seeing the part of the show or ceremony in order to leave with Trent to support his needs. I realize how embarrassing and difficult this was on his brothers.

3)    I recall many experiences of rude and cruel people whom I encountered in public. One summer day I found the courage and enjoyment to take my three sons along with two of their friends to a nearby amusement park. Trent was 8 years old then, and was not able to manage the full day outing as he was miserable and began to tantrum. I remember that a woman from the amusement park approached me and questioned me. She thought I had been abusing him. She asked Trent questions, and when he could not answer effectively, she walked away. I remember how humiliating it was to be judged and not understood.

I was Trent’s advocate at a time when there were few children labeled with autism. I faced an uphill battle during his early school years, advocating for speech therapy, appropriate goals and objectives for his IEP, as well as inclusion with nondisabled students for participation and socialization.

Fortunately high school became a positive experience for Trent. He sang in the high school chorus. I remember attending a performance where he was the only one singing and rocking in perfect time to the beat. His body language gloriously shined indicating his enjoyment in performing. He had the opportunity to have a paid job in a grocery story with a job coach who went with him for support and training. These examples were some of the positive highlights of Trent’s high school experience.

I believe that transition from school to adulthood was incredibly the most difficult phase for Trent and our family. For the first two years after Trent left high school he had few resources that connected him to others or the community. He regressed into severe withdrawal and obsessive behaviors. Without opportunities to participate, be included, and grow, people with autism often regress.

I networked and advocated for Trent a life of his own. In Trent’s behalf numerous persons became part of the process helping him get the life he has today, a life that is personally satisfying to him. With the broad creative supports i.e., a live-in assistant friend, a job coach, and coworker supports on his job, Trent was capable of working. At the age of 24, Trent worked at K-Mart. placing security tags on clothes. For 8 years thereafter, Trent worked at Meijer Retail and where he continues to work today. We (the job coach and I) negotiated in 2002 that Trent and Jason (his live-in roommate) be hired as a team so Trent would have the supports he needed on the job. Throughout the years his jobs have been in lawn and garden and the Pets Dept., cleaning the bird and gerbil cages.

The Discovery of Trent Artistic Gift

One year after Trent had been living in his own house with a roommate for support, I thought that he would benefit from new community exposure and experiences. I recalled that his teachers through out the years commented that Trent loved working with his hands, crafts etc. I explored crafty art activities in the community. Yet when I found art classes, they were mainly for adults who were advanced, or children. So I approached an art store and asked if anyone would be interested in coming to Trent’s house and doing art work two days a week. I placed an ad on their bulletin board, and the next day a University of Louisville art student responded. Teresa worked with Trent on different kinds of art activities, but painting was his favorite. After 6 months he began producing some very unique artistic pieces. That is how it all started. Trent’s work has evolved over the past five years. Moreover, he has grown in his capability to create his artwork. He has since had several art facilitators, Elaine and Lori.  Trent still has challenges in expressive communication yet with people supports he experiences social belonging. With certain broad creative supports, along with exposure and participation in different community settings, he exhibits a positive self-image and increased adaptive capability.

Since Trent was a small child, I dreamt of him living as an adult in a quality of life with his needs met. That dream unfolded: Trent’s own home, a job he likes, a life as an artist with friends. I never dreamt he would have an artistic talent nor that he would become an award-winning artist. He has become a contributing member of society. I suppose Trent and I both got ‘icing on our cake.’

Dr. Jackie

I appreciate you taking time to read my blog. I have prepared this content just for you. I enjoy talking about the tools that help people with all disabilities and their families connect and live their lives more fully. I invite you to give me input and feedback as I am writing a book on Using the Capability Approach.

www.drjackiemarquette.com

Jackie@drjackiemarquette.com

Copyrighted© Jackie M. Marquette Ph.D., October 25, 2010

The Impact of Acknowledging Challenges: Youth with Autism and Developmental Disabilities

Acknowledging your son/daughter or student’s challenges sets a powerful direction in planning, and can become a foundational building block. Consider this question: “Can acknowledging a person’s challenges really set the direction that can build upon a person’s self image and social belonging? YES, it is the first and most important step. In fact, acknowledging a person’s challenges is different from focusing on a person’s disability characteristic.

Let me demonstrate through this example. This is Elaine’s story. I want you to see that when others began acknowledging her challenges it became the first step of many to follow that changed her self image and capability to participate socially in her own way.

Elaine has autism, is 16 years old and in the 10th grade in high school. She is very introverted and quiet, always preferring to be alone. Elaine’s disability characteristic from her diagnosis is stated in her records as follows: failure to develop peer relationships appropriate to developmental level. If we focus mainly on her disability we become stuck in our tracks, closed from seeing possibilities beyond the disability. This is especially the case in a world with rigid rules of conforming and independent standards.

Yet, if we dig deeper on Elaine’s behalf, we could translate the disability characteristic into this: Elaine has a significant challenge to enter on her own into new situations or activities with peers her age.

Elaine’s typical life was sitting at home after the school day ended and all weekend long. Her parents worried about her life and the uncertain future ahead when high school ended. They agonized how Elaine would fit in with her peers, have a job, or manage college. Most importantly, they were concerned about Elaine’s emotional well-being and believed at times she seemed depressed.

Her parents knew deep down that Elaine had so much value as she has become a delightful teenager. But others just have not seen it yet. They also recognized that Elaine will require assistance to make a leap into any social setting that would connect her to others.

Her mother noticed one particular interest that captured Elaine’s attention and her heart, this was music videos. In her room alone she would sing and dance to her favorite song writers and musicians, pop, gospel, Christian, and blues.

Her mother believed that if others could see her musical interests as well as social challenges then possibly they would want to be part of creating supports that would enable Elaine. Her mother approached teachers and other leaders in school to discuss a plan for inclusion.

Now for the exciting results. Because of a teacher’s understanding, Elaine began participating in drama class, as a team member choosing music and songs for the school plays. Due to the choir teacher’s recognition, Elaine discovered she was a strong alto singer. She practices regularly with other altos in the school choir. Elaine began attending musical events in her community inviting friends and acquaintances from her school and church youth group, all supported and guided by her parents.

Indeed, it is difficult for Elaine to  socially connect to peers independently. When her mother sought assistance, which drew upon others’ support, this became the first step that moved her forward into developing a positive self-image and social belonging.

I offer you this checklist of questions. Think about your own family member with a disability and recognize how you can better acknowledge his or her challenges that can lead to creating individualized supports and new opportunities.

1. Cultivate Big-Picture Thinking

Am I thinking beyond my son/daughter’s disability label in order to see interests and strengths?

2. Engage in a Capability Perspective

Am I dedicated to helping myself as well as others remove the focus of disability deficits regarding my son/daughter that could limit options for growth and self-image?

3. Harness Creative Thinking

Am I working to break out of my “box,” exploring ideas and options, so my son/daughter can experience more enjoyment or inclusion?

4. Employ Realistic Thinking

Am I building a solid foundation by first acknowledging my son/daughter challenges and then interests and strengths?

5. Question Popular Thinking

Am I consciously rejecting the limitations of common thinking toward people with autism and related disabilities in order to accomplish uncommon results for my son?

I appreciate you taking time to read my blog. I have prepared this content just for you. I enjoy talking about the tools that help people with all disabilities and their families connect and live their lives more fully. I invite you to give me input and feedback as I am writing a book on Using the Capability Approach.

Dr. Jackie

www.drjackiemarquette.com

Jackie@drjackiemarquette.com

Copyrighted© Jackie M. Marquette Ph.D., Jackie M. Marquette Ph.D. September 22, 2010

Creating an Optimistic View of Life: ASD and Developmental Disabilities

When you invest in creating an optimistic view of your son or daughter’s adulthood, you are investing in emotional stability and crisis prevention. We all should care about what happens to children when they grow up to become teenagers and then adults. We don’t talk enough about this group and their teen years and adulthood.

Here is an illustration.

When high school days ended, the next few years became a difficult time for Ron because there were few resources that connected him out of his house. Ron’s typical day at home was excessively controlling the TV channels, and being obsessed with turning lights on and off. He seemed anxious and depressed most of the time.

His mother was deeply worried about him. The things he used to do he could not do any longer. She was unable to take him into the community, for example to the grocery store because he would obsess with moving items around on store shelves. She felt his life was headed for a real crisis and she feared for his safety. Yet, she was determined to find the help and support Ron needed.

Ron’s life began to change when Joseph, a community coach exposed him to settings such as, YMCA for exercise, and stores to shop for clothing and personal items. This consistent structure occurred for months. Ron looked forward to Joseph coming by and the outings.

Eventually, Ron began to show the willingness and the stability that connected him to other people and activities. His favorites were horse-riding therapy and listening to a band he enjoyed at a coffee shop. Surprisingly, Ron’s obsessive and controlling behaviors diminished and his capability levels toward accepting different environments increased.

Quality of life for people with autism is a social and a political issue. The emotional well-being of your son or daughter must be considered. Emotional well-being is not the absence of distress or disease. It is something positive to live for, it is feeling safe, being comfortable, and involves being accepted. We must better understand how individualized supports can help alleviate a person’s challenges.

But first, it requires that we have shift in thinking toward the value of providing necessary community supports. The truth is, we all play a part in investing and creating an optimistic view for youth with ASD. It may be your teen, your young adult, your brother, your nephew, your student, your client, your next-door neighbor, or church member with children who have autism or other disabilities.

Take action now. You are the one who knows your son’s needs, his strengths, and the activities he might enjoy. You can be a counter force to a crisis forming off in the distance. Today find ways to create an optimistic view for your son or daughter that will impact emotional well-being.

I appreciate you taking time to read my blog. I have prepared this content just for you. I enjoy talking about the tools that help people with all disabilities and their families connect and live their lives more fully. I invite you to give me input and feedback as I am writing a book on Using the Capability Approach.

Dr. Jackie

www.drjackiemarquette.com

Jackie@drjackiemarquette.com

Copyrighted© Jackie M. Marquette Ph.D., Jackie M. Marquette Ph.D., August 17, 2010

Building Emotional Stability in Youth with Autism

Guiding youth to become their most true selves is important for their emotional stability. To parents and advocates, this can seem complicated especially when their disability is not well understood by others or when their disability overshadows their strengths. Much is written and practiced about strategies that correct negative behaviors so individuals can fit in a setting or in a group. While these strategies are helpful in early childhood, the truth is childhood interventions including ABA are incomplete for the teen or young adult. It is the overemphasis, ‘fixing’ one’s behavior or correcting social responses that can lead to a cycle of frustration, as the individual receives messages “I am not good enough.” This cycle of frustration leads to emotional instability.

I had a client, a mom of a 19-year son with autism. She claimed, that once he successfully learned all the necessary social skills, then he can go out into the community to get a job.” I empathized with her sadness and determination, fully recalling 1000s of times I exposed my son Trent to environments where he did not always respond appropriately. I then asked her, “Where do people learn social skills best? How is preventing your son from entering different settings helping his ability to interact, participate, or building his flexibility to adapt? What will isolation do to his emotional stability? The root truth is our youth cannot fully experience social and skill adaptations in only a closed setting.

Youth with ASD (related disabilities) learn best when they have opportunities and broad creative supports to experience new skills and environments. Examples of supports that affect a person’s behavior: physiological, structural, environments, and people. People with autism adapt when they feel safe around others who accept them. They enjoy and grow from experiences when their personal interests, strengths, and talents are used and accentuated.

Martin Seligman said it best, “Curing the negatives does not produce the positives.”

Below is a short checklist to guide you in building emotional stability in the teen or young adult:

a) That the individual knows he truly matters, that he is somebody, one who has a place and a group to belong to:

b) That basic needs are met and satisfied;

sleep,

nutrition,

cleanliness surroundings,

medical care, therapy &

education or training.

c) The opportunity to explore interests; enjoy certain activities, and share events with others.

d) Takes part, acts, and pursues interests with goals that have personal importance and meaning. It is about having persons in life in which he or she feels safe and are “go to” people for support. These things, persons, or interests enhance the individual’s connectedness to others, to associations, friends, and community (i.e, church).

Perhaps they need us to see something in them that is valuable. They need us to believe they are OK just who they are, disability and all, and that is more than outward appearances. Lastly, when we notice their interests and strengths, and build broad creative supports, these help cultivate their unique positive contributions.

Through belonging, people find acceptance.

Through self worth, people feel love.

Through capability, people feel secure.

I appreciate you taking time to read my blog. I have prepared this content just for you. I enjoy talking about the tools that help people with all disabilities and their families connect and live their lives more fully. I invite you to give me input and feedback as I am writing a book on Using the Capability Approach.

Dr. Jackie

www.drjackiemarquette.com

Jackie@drjackiemarquette.com

Copyrighted© Jackie M. Marquette Ph.D., October 25, 2010

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