June 11, 2014

A Home of his Own: Transition of Vijay Patnaik - A Sibling Perspective

 Dr. Sumeeta Patnaik is the co-guardian and co-conservator of Vijay Patnaik. She is currently employed at INTO-Marshall as the Academic English Coordinator. Dr. Patnaik is a graduate of Marshall University with a Doctorate of Education.

The transition of an autistic sibling from a family home to their own home is always traumatic for the family. It is especially difficult for the non-autistic sibling, who often takes the role of a caregiver, to allow his or her autistic sibling to leave the family home. The relationship between these siblings is especially strong, with a loving bond that lasts for a lifetime. 
 
Yet a well-planned transition can effectively allow both siblings to seamlessly continue their relationship while allowing both siblings to mature and make personal progress. Supports are the key to a successful transition with both siblings receiving support from family members, mental health professionals, and members of the community. 
 
It was difficult for me to allow my brother, Vijay, to leave home and transition to his new home as I worried about the quality of his care and was concerned that he would feel disconnected from his family. Nevertheless, the proper supports allowed Vijay to successfully transition to his home, and our relationship has deepen as a result. For four years, prior to his transition, my family and I worked to try and purchase a home of his own for Vijay. We felt that this transition would allow Vijay to mature as a person while allowing his family the comfort of knowing that he was well-secured in his own home.
 
Vijay’s transition to his home began after the death of our father, Dr. Dhirendranath Patnaik, in July 2012. My inheritance, from my father, provided me with an unexpected income that would allow me to create a special needs trust and purchase a home for Vijay under that trust. Our family worked with Vijay’s support team at Prestera Center to create a transitional plan for Vijay. The plan included maintenance of his home, becoming acquainted with his neighbors, and a staff support plan that would allow them to best assist Vijay in his home. By December, Vijay moved into his home, and we celebrated a Vijay-style Christmas there!
 
Since his transition two years ago, Vijay has taken ownership of his home. He is well-liked by his neighbors, and he often has friends over for dinner. Working with his staff, we have been able to maintain his home and create a supportive environment that best caters to meeting Vijay’s needs. Vijay’s transition required a team effort, and with support from Prestera center, Vijay’s family was able to provide him with a home of his own. We hope to continue to support Vijay in his home for many years to come.

 

 

Sibling Stress


This article is authored by Luke Walker, a Positive Behavior Support Trainer for the WV ATC
 The effects felt within a family when a child has been diagnosed with an autism spectrum disorder (ASD) can be both challenging and strengthening but affects the whole family. A study from 2010 found that siblings of individuals with ASD’s displayed signs of developing hyperactivity, and supported the notion that “mothers of young autistic children experience more depression and stress than mothers of typically developing children.” (Barlow, 2010). Previous studies have had mixed findings but many suggest that siblings also experience symptoms similar to autism such as difficulties with social interactions, communication, and behavior. Furthermore, around 30 percent of siblings of autistic children have some associated difficulties in behavior, learning, or development.
One previous study looked specifically at sibling’s depression, social adjustment and the level of child care and domestic responsibility, for siblings for young boys with autism. They reported a significantly higher rating of depression compared to siblings of children without autism, but not a difference with social adjustment. (Gold, 1993).

Parental attention can also play a factor in the amount of stress for a sibling. Parents have less time and resources to dedicate to a sibling as typically most of their attention is focused on raising the child with autism. It can be a struggle to balance the needs of the child with autism versus the needs of the family and other children.
This blog article will help provide some information and resources for parents and siblings about sibling stress and how to support other children in the family.

Types of Stress on Nonautistic Siblings

Family life for siblings of children with autism can be potentially stressful. The Autism Society of America describes the types of stress commonly faced by siblings:
  • Jealousy over the time parents spend with the autistic sibling
  • Embarrassment over any public displays of autistic behavior and routines that make the family stand out from peers
  • Frustration over social interaction difficulties with the autistic sibling
  • Stressed about being the target of the autistic sibling's aggressive behavior
  • Worry about parents being stressed
  • May feel a need to overcompensate and overachieve in order to please parents and get more attention
  • Fear of serving a future caregiver role to sibling with autism
A large number of siblings of children with autism have also exhibited the following positive characteristics: (from autism.lovetoknow.com)
  • Admiration for sibling with autism
  • Proud to help autistic sibling
  • According to a Time.com article, "Autistic Kids: The Sibling Problem", a significant number of siblings of people with autism go into autism support service careers.

The needs of siblings
The website of the Autism Society of America provides an excellent PDF guide for parents to outline the needs of siblings. According to that source, some examples of the needs of siblings include:
  • Siblings need communication that is open, honest, developmentally appropriate, and ongoing.
  • Siblings need developmentally appropriate and ongoing information about their siblings’s ASD
  • Siblings need to learn interaction skills with their brother or sister with ASD

Siblings need time to work through their feelings with patience, understanding, and guidance from their parent(s) and/or a professional, if appropriate. 

The WVATC sibling program
With these needs in mind, the West Virginia Autism Training Center has designed a program to support siblings which addresses needs and provides information to the sibling. The program highlights the siblings goals and dreams using an individualized approach that can involve further education about autism, how to interact with their siblings, increase time and attention from parents or provide an opportunity to discuss their feelings.
Contact the West Virginia Autism Training Center to find out more information about supporting siblings and follow the suggested links below:
http://www.autism-society.org/living-with-autism/family-issues/siblings.html

http://www.autism-society.org/living-with-autism/family-issues/sibling-perspectives.pdf
http://autism.lovetoknow.com/Autism_and_Nonautistic_Siblings

 References
http://www.futurity.org/the-sibling-side-effect-of-autism/

http://www.autism-society.org/living-with-autism/family-issues/siblings.html

Gold, N. 1993. “Depression and social adjustment in siblings of boys with autism”, J Autism Dev Disord. 1993 Mar; 23(1):147-63.

 

 

November 26, 2013

"Don't Call Me Mom!"

The following is written by Dr. Marc Ellison, the Interim Executive Director of the WV ATC.

In the mid-1990s – a world of antiquities now, I know– my friend Cynthia Garcia published a wonderful essay in which she explained her disdain for being called “Mom” by professionals. Because the essay was published prior to the widespread use of that series of tubes known as the Internets, I can no longer find a copy of that essay. But plenty of other sources tell me that this shorthand phrase commonly used by professionals can be insulting to the parents of those we support.

Sophie’s mother explains it well in her article found at this link.

Over the years, I have variously been referred to as Mom in IEP meetings and at doctors' offices, and I have to say that it always makes my skin crawl. I find it undignified, in a way, a word that doesn't exactly conjure the same respect as Mother, for example, . . . I want my children to call me mom, and I even don't mind being referred to as Sophie's mom or Henry's mom or Oliver's mother. [B] I have to say that when I'm negotiating with a doctor over my daughter's healthcare needs, or fighting an insurance company or discussing my daughter's education in an IEP meeting, calling me Mom as in Mom has some concerns about such and such or Mom, how are we doing today? -- well, I'm going to bristle. The word is more of an endearment, to me, than an address. If we're going to continue down this much-welcomed path of patient-centered care where parents are equal partners in the care of their child, particularly those with special healthcare needs, we need to address one another by our names. 
 Research shows many parents agree. In their manuscript “Don’t Call Me Mom: How Parents Want to be Greeted By Their Pediatrician,” Amer and Fischer (2009) describe the expectations parents have in regard to relationship building with their pediatrician. 88% of the parents in the study said the use of their name by the pediatrician during the initial greeting was integral to the development of their therapeutic relationship; however, only 14% of residents and 24% of attending physicians did so.

We who work in the business of supporting others spend a significant amount of time discussing person-centered values and language, so it makes sense to me that our professional culture really should be primed to understand and accept this concept. Yet many in the human service community continue to be less than thoughtful of the issue raised by Mrs. Garcia, and insensitive to how we interact with folks who perceive our communication gaffs in the same light as Sophie’s mother described:

“Undignified.”

Let's all do our part in 2014 to ensure this gaff doesn't continue to be a part of our professional culture.

August 19, 2013

Sibling Resources

Autism Speaks' Family Services forum provides a terrific resource titled: "A Sibling's Guide to Autism," available at this link. One must register to download the document, but it is worth the effort.

In addition, please check out the video: "Being an Autism Sibling", below. Additional videos on sibling issues have been added to the resource list to the tight of this page.


June 13, 2013

Marshall Graduate Discusses Bereavement And Autism

Marshall University graduate, and former participant in the College Program, Brian Wong was recently interviewed on Autism Radio's "Hope Saves The Day" show. On the program Brian discussed the topic "Bereavement and Autism," in which he has a scholarly and personal interest.

You can hear the 28 minute interview at this link.

Brian recently authored an article for the ASA's Advocate on the topic, and will speak at the upcoming ASA national conference held in Pittsburgh in early July, 2013.

April 16, 2013

ASD and Fitness

The following is written by Stacie Merritt, a Positive Behavior Support Trainer for the West Virginia Autism Training Center. Stacie discusses the importance of fitness to life quality, and provides several strategies designed to introduce exercise.

For many, the idea of starting a fitness program can be overwhelming. It is easy to get too busy or overwhelmed but health issues can be caused by a sedentary lifestyle. For optimal physical, emotional, and cognitive well-being – it’s a good idea to move!

Evidence shows that exercise has tremendous benefits for all. Fitness for people living on the autism spectrum is no exception. But improved fitness for individuals with autism spectrum disorders sometimes requires significant planning, and a greater exchange of information between professionals, educators, and parents. There are creative ways to get moving. The key is to ask individuals what they like to do, then then figure out how you can connect their exercise regimen with their interests.

If you are ready to introduce or enhance fitness for the individual with whom you work, teach, or live, here are several ways to make exercise more fun and effective suggested by autism and fitness expert Eric Chessen, M.S., YCS:

1. Short periods of activity. Pick 3 or 4 activities to do anywhere from 10 seconds to 5 minutes (with breaks) throughout the day. Having shorter durations of fitness can be less anxiety provoking and more tolerable for those with aversions to movement or new activities. A few favorites are medicine ball throws, bear walks, hops, overhead carries, rope swings, and jumping variations.

2. Begin introducing vegetables. They may not even want it on the table near the plate the first time, but vegetables are important. Keep reintroducing them. Don’t make a fuss. Don’t even acknowledge that the broccoli spear is there. Let them discover it.

3. Introduce medicine ball throws, push throw, overhead, and scoop.

4. Ditch treadmills and other running machines for rope swings, short sprints, and frog hops. All the cardiovascular benefit (more, in fact)without the boring-ness.

5. When in doubt, pick something up and carry it overhead. Most athletes had low muscle tone with poor posture when they began exercising. Overhead carries solve both these issues.

6. Use fitness as an opportunity for socialization. Want to see interaction come to life? Have two students toss a ball back and forth or perform tandem (together) jumps forwards, backwards, and side-to-side.

7. Provide Choices. I like to have my athlete pick which activity or piece of equipment they want to use first. It promoted independence and autonomy.

8. More Protein. It builds healthy lean muscle and increases satiety.

9. Build a fitness network. Get together with other families and plan group hikes, bikes, and group exercise activities.

10. Play Outside. Something about being outside makes exercise more fun. It also promotes generalization or crossover of skills from one environment to another.

11. Climb stuff. Climbing up a rope ladder or slide requires trunk stability, upper body strength, coordination, and grip. It is one of the least-performed yet most effective fitness activities.

March 22, 2013

Our Social Responsibility

 
The following is written by Peggy Hovatter, a Positive Behavior Support Trainer for the West Virginia Autism Training Center. Peggy provides a discussion on developing social clubs for individuals living on the autism spectrum.

Human social behavior is nothing short of incredible. We are capable of transmitting an amazing amount of information with relatively subtle signals. By assessing just how often and how complexly we use social skills to navigate through our world, we bring to light behaviors that have become second nature to us. During your next visit to the grocery store, church or local restaurant objectively observe yourself and others in the constant give and take of social behavior, and take note of the subtle cues, gestures, expressions, vocal patterns, and indicators used in those exchanges.

Taking these skills for granted is easy to do.

The importance of social exchange for our wellbeing is immeasurable. We crave sharing our space and ideas with our friends or others we encounter in life. Social interaction leads to some of the most meaningful human experiences: friendship, courtship, marriage, laughter, politics, philosophy, parties, etc. Because the value of human exchange is so great, we are forced to assess what adverse effects may occur if socialization is compromised.
 
Socialization is considered to be the primary deficit in those with autism spectrum disorders. Shouldn’t it then carry equal importance with regard to skill building as do academic and daily living?  More and more, social goals and objectives are being included in Individualized Education Plans (IEP),  Individualized Habilitation Plans (IHP) and Individualized Family Service Plans (IFSP).  How wonderful that we understand social growth as an integral puzzle piece of a life of quality!  Our challenge now is to implement techniques that have meaningful outcomes.

Use of a “club” format was implemented seven years ago whose birth was a result of the Family Focus Positive Behavior Support Program. I was meeting intelligent, fun-loving, humorous adolescents and teenagers (diagnosed with Asperger’s/High Functioning Autism) who remained isolated when it came to friendships.  Upon further investigation, I realized that they misunderstood interactions from typical peers and were not given the opportunity to feel one of the most important intrinsic social rewards in human nature: “belonging”.  Feeling that they were a part of something…anything…relating to others their own age.  A few years ago, realizing that the younger kids had similar needs, another club was formed for elementary school aged students.

My mission was identified. Next step was how to provide activities that would be fun and informative? There are many resources available that were developed specifically for people with autism. Authors off the top of my head include Judith Coucouvanis, Michelle Winner, Cindy Schneider, Andrew Nelson, Steve Guttstein, Brenda Smith Myles and Pamela Wolfberg to name a few. A favorite activity among the kids is “Spotlight Focus” (Nelson’s book) that addresses facial expressions with matching comments:



As my research continued, I realized that any resource that addresses self-esteem, team building and just plain FUN would match the club format perfectly.  Games that involved idioms became a consistent part of our schedule and continue to be enjoyed.  New ideas have a way of popping up if you’re in the “social mindset”. I found some three-part sequence cards online and developed an activity that involved listening and attending. 




While browsing at a yard sale one weekend, I saw a ream of cardboard strips from a hardware store that showed the different shades of paint.  Each strip had the same color from light to darker.  Aha!  Idea! Let’s show the different levels of emotions via lighter to darker colors and increase understanding through visual supports!  The following activity was developed: The group divided into two teams and were given a crayon and a piece of paper with a rectangle divided into four sections.  The “Happy” team had to think of four varying levels of happy and identify each level with a word.  As the emotion increased in intensity, the color got darker.  The “Happy” team came up with pleased, happy, thrilled and ecstatic .  The “Mad” team did the same with their emotion.  The following is a video clip of the “Mad” team reporting out after group discussion:




 
 

Activities that require turn taking and working together can address important social skills.  In the activity “Build A City”, each child is given a different colored marker.  There is a list of what each color is assigned to draw.  For example, the green marker will draw trees and shrubs, the black marker will draw roads and parking lots, etc.  Conversation between participants begins to flow quite naturally as they begin to draw their city.



 
Conversation starters and topics through visual support can be as simple as a bingo game. Here's one with a twist! Look carefully at the card below. There are many different pictures of the same generic item, such as Christmas trees, wreaths, candy canes, snowmen etc. Participants have to listen carefully to the item that is described such as “A Christmas tree with red diagonal stripes” as opposed to “A Christmas tree made out of puzzle pieces”.

 
Practically every person enjoys acting and performing.  Here’s some role playing ideas that directly relate to social situations for people with autism:

1. You are talking to someone about ideas for a science project.  They look away, roll their eyes and start to play with their pencil.
2. You enter class and see your friend looking at this spelling test.  He looks upset. When he sees you coming, he quickly turns the test paper over.


3. You get on the bus and sit with a friend.  She is smiling and looking at you.

4. You get on the bus and sit with someone.  They turn away and cross their arms, looking mad.

In summary, a club is a group of people with similar interests who meet regularly to enjoy one another and share commonalities.  Members are relaxed and accepted.  Members feel that they ‘belong’.  Relationships are formed, friends are made.  The knowledge that you’re part of a group sustains you during other times of your life.  
It’s a great feeling!

January 22, 2013

Grandparenting Children with ASD

Intake Coordinator Angela Bryson will be conducting an electronic workshop on February 1, 2013 (via GoToMeeting) related to grandparenting children diagnosed with autism spectrum disorders. The workshop is free, but limited to 20 participants. Please click this link to arrive at the website on which you can register.