October 06, 2014

FF - PBS: What Are You Waiting For?


The following is written by Bonnie Marquis, a Positive Behavior Support Trainer for the West Virginia Autism Training Center.
Many people who register with the WV Autism Training Center (ATC) also apply for the Family Focus Positive Behavior Support program. So popular is this program that many people mistakenly believe that this is the only service we have and since there is a wait time of up to two years, they never bother to register with ATC at all.  And although many do apply, they do so without really understanding what it is they are waiting for.
Anyone who has registered with ATC should already know of the many services available throughout the entire state. These range from the free coaching sessions and the amazing and up to date library, to the skills groups, resource referrals and other trainings, all of which are free to registered clients and families.  New training formats, delivery options and topics are constantly being developed as well.

But what exactly are they waiting for with this FF-PBS program? In short, it is an incredible opportunity to have the knowledge and expertise of an ATC Positive Support Trainer as they facilitate a process that has the capacity to dramatically improve the quality of life for both the focus person (the client with an ASD) and the entire family. In some circumstances the process also results in improved services beyond the focus person as teachers and service providers are offered the opportunity to learn new skills and strategies that can be implemented with others now and in the future.
The process is individualized and difficult to summarize since the way it unfolds varies based on the needs of the individual and the dynamics of the team. However, certain aspects of gathering information and developing an action plan to achieve team selected goals are somewhat standard. In every case however, it is time consuming. Because it is firmly based on principles of person centered planning and incorporates a collaborative team approach, it sometimes seems to move at a snail’s pace and much will be asked of families and team members that choose to participate. This often takes the form of home visits, school meetings, trainings and coaching sessions (to assist in the implementation of selected strategies).  Families may also be called upon to collect information regarding the behaviors they want to address so the trainers can assist in determining their cause and help develop a meaningful support plan which will result in lasting improvements.
The process also often asks participants to make some changes – to their routines or structure of activities, how they respond to behaviors or venturing out to engage in new activities. But the changes are never dictated. Rather they are decided upon by the team as a result of discussion, consultation and learning new information. Nevertheless change can be difficult and it can often feel like three steps forward, two steps back.

But with the support of ATC many teams have seen some truly amazing results when they have embraced the process.  And that doesn’t mean just taking the suggestions of the trainer. The truth of the matter is that while the trainer knows a great deal about autism, it is the rest of the team that really knows the focus person and how life is lived on a daily basis.  Their input is the vital ingredient to individualizing supports that will be most effective in achieving the goals set forth by the team. The most effective teams truly engage with the process and develop a trust characterized by honest dialogue about what should be tried, tweaked, continued or abandoned. The least effective teams nod and agree while silently thinking to themselves “this will never work.”  And the most effective teams speak up about doubts or challenges and ask for help when needed. The least effective teams fall back into old routines and let opportunities slip by, too busy or overwhelmed to make changes or seek out support. 
Because of this, the dynamics of a team can be the most important aspect of the process and team selection and development takes careful consideration. Involving people with a genuine positive regard for the focus person is vital. This is especially true if there are potential participants that regularly work with the focus person, and thus really should to be included, who may be less than optimistic. The team’s positive approach can often change those negative perspectives in surprising ways, especially as many of the tools used in the process are designed to focus on strengths, and a positive and possible future. There is also, as mentioned from the outset, a focus on quality of life. The process attempts to do this by whatever means the team decides, but it should never be limited to just reducing challenging behavior or gaining a particular daily living skill. While quality of life happens to be the focal point of ATC’s mission statement, there are practical reasons for stressing these types of goals.

 There is a tendency in our society, particularly for those with disabilities, to withhold those elements that would improve quality of life or are seen as enjoyable and desirable until they have somehow earned it, often through improved behavior or achieving some objective (unrelated to community access or the  preferred activity itself). Most often however, it is actually having something which “makes life worth living” that allows us to find the motivation or inner strength to make sustained efforts toward self-improvement.   Sometimes, among all the other services and facilitation that your trainer can provide, it’s keeping things in a positive and person centered perspective that can have the greatest impact, for everyone involved.
A final goal for FF-PBS is for participants to sustain the process and to have learned the skills and strategies needed to continue long after the ATC trainer’s time with the team has ended. To meet and collaborate as needed, set forth new goals and incorporate new team members, and build on the momentum and successes of the previous team.

Certainly, this process is not for everyone, either by design or level of need or the required time commitment.  It should also be noted that certain life circumstances (divorce, relocation, new jobs etc.)  may make participation at a given time particularly difficult and every effort is made to accommodate families if they need to suspend or postpone services or if they wish to switch to a less intensive, more focused service model that can assist with single/limited issue concerns, known as the Solution Focused Process. Knowing in advance the nature of the involvement will hopefully aid in the selection of appropriate services and  understanding  what FF-PBS is and is not (for example it is certainly not a direct therapy). And again, FF-PBS  is just one of many services available with ATC, and the agency is committed to supporting individuals with autism spectrum disorder as they pursue a life of quality.

July 30, 2014

Preparing For The New School Year

Dr. Cathy Pratt, Director of the Indiana Resource Center for Autism, provided these helpful hints to parents to best support children with ASD as they begin a new school year. The article, "For Parents: Preparing For the School Year," can be found at this link.

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.