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.