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February 2018

 

 

 

 

In this issue:

Education

Volunteer Spotlight

Connecting Sports with Awareness

Research

National Convention 2018

Financial Resources for Attending Convention

 


 Education

Education Vocabulary: Accommodation vs. Modification

More and more kids with Williams syndrome are accessing and participating in the general education curriculum.  We continue to educate the educators on the learning profiles of students with WS, and they are able to implement appropriate accommodations that allow the child to access the curriculum or respond to the curriculum in a different way.  

Many times the terms accommodation and modification are used interchangeably.  This is wrong - they are two very different things.  It is important to understand the difference between an accommodation and a modification.

Accommodations can be very helpful to students. They are adjustments made to help students "access" the curriculum.  They do not impact the student’s ability to receive full credit for a class or their eligibility for graduation.  Modifications, however, mean that the content of the class has been “significantly” altered in such a way that it impacts the teacher’s ability to grade the student in the same way as other students.

Here is a great explanation from www.washington.edu

The term "accommodation" may be used to describe an alteration of environment, curriculum format, or equipment that allows an individual with a disability to gain access to content and/or complete assigned tasks. They allow students with disabilities to pursue a regular course of study. Since accommodations do not alter what is being taught, instructors should be able to implement the same grading scale for students with disabilities as they do for students without disabilities. Examples of accommodations include:

  • Sign language interpreters for students who are deaf
  • Text-to-speech computer-based systems for students with visual impairments or Dyslexia
  • Extended time for students with fine motor limitations, visual impairments, or learning disabilities
  • Large-print books and worksheets for students with visual impairments
  • Trackballs and alternative keyboards for students who operate a standard mouse and keyboard

The term "modification" may be used to describe a change in the curriculum. Modifications are made for students with disabilities who are unable to comprehend all of the content an instructor is teaching. For example, assignments might be reduced in number and modified significantly for an elementary school student with cognitive impairments that limit his/her ability to understand the content in the general education class in which they are included.

A key point is the “change in the curriculum.”  Generally speaking, the change results in a vast reduction in the content - they are completing less than 60% of the regular work or perhaps student in one grade are completing the work that is typical for a lower grade (a student is in 6th grade and working on 4th grade math).  It is very common for children with Williams syndrome to be working on a different “grade level” or “instructional level” than the actual grade they are in, especially in math.

Reducing content is another thing entirely.  Content reduction can be a slippery slope OR it can be a perfect solution to ensure that a student is being taught the “gist” of a lesson and is able to demonstrate that learning.  For example, if the general education content is reduced to 60% of what is given to everyone else and the student gets all of it correct, they have earned the equivalent of a “real” D on the assignment.  However, if they get anything wrong, they will have failed the assignment.  Multiple failed assignments mean they have failed the class.  It is very important that everyone has a clear understanding of what is being reduced and what the criteria is for the reduction.

Sometimes, cherry-picking the content for the “essential concepts” is a great way to ensure that a child is held accountable for learning the important bits and not penalized for not being able to learn “everything.”  Again, this is often a modification and the entire IEP team should agree on the terms of the modification and outline these in the IEP.

 Graphically, it looks something like this:

For more information, please see this publication from Wright’s Law: http://www.wrightslaw.com/info/sec504.accoms.mods.pdf.  Understanding the difference between accommodations and modifications is essential to understanding exactly what your child's educational team is suggesting for your child.



Volunteer Spotlight: Erin Rupolo

Erin Rupolo is the regional chairperson for the Mid-Atlantic region: https://williams-syndrome.org/parent/connect-ws-community!

As regional chair, Erin is available to families and understands the resources in her region. Need a document? Erin has it and will share it. She is a special education para-educator for Montgomery County Public Schools and a passionate advocate for inclusion, both in school and the community at large. She lives in Potomac with husband Brian and children Barrett, who is 10, and Sophie (WS), who is nine. With the 2018 national convention in Maryland in 2018, Erin is a great asset to the planning committee. 
 
Erin isn’t only the regional chair, she began volunteering for the WSA as a co-coordinator for the Maryland Walk for Williams years ago.  While attending a WSA Gala in DC when Sophie was a baby, the walk coordinator's mother and Erin’s Mom were seated at the same table. After some conversation between them, Erin found herself being recruited for the task, and helped coordinate the walk in its second year. The walk has since gone from a high school philanthropy project that raised $5,000 the first year, to one of our largest walks, raising 50,000+ in 2017.  Erin’s 8th Walk for Williams in Maryland was her last as a chairperson. After many years of successfully building the walk, she has passed the baton to new coordinators Julie Crosby and Lauren Decker.  Erin will continue to serve as a mentor and will fundraise via the strong and vibrant Team Sophie, named for her daughter. 
 
Erin reports that member involvement is key to building great events--excitement and competition with building teams, and ensuring that an event is more than just a fundraiser (though that is important!) but also a gathering with entertainment for all and a focus on helping other families truly make a difference. The Maryland Walk has at least 35 individuals with WS in attendance—and the walk is all about each of them along with their family and friends.
 
It is our privilege to honor Erin for all her efforts and thank her for her hard work, and her infectious energy, as well as her openness and willingness to share knowledge and advice. We look forward to working wtih Erin for many years to come and are grateful for her continued dedication to the WSA as regional chair for the Mid-Atlantic region and as the team captain and head cheerleader for Team Sophie!  Thanks for all you do, Erin!
 

Awareness and Sports: A Good Fit!

A growing trend for awareness involves partnering and holding events with local sports teams.  Is there a major or minor league team in your area? They may be a great source for providing excitement and exposure (those jumbotrons!) for Williams syndrome.  In 2016-17, awesome volunteers in and around Philadelphia partnered with MLB’s Phillies organization to create an engaging family event that raised awareness and funds.  We invite you to join other families who are now looking into hosting similar events around the country with both major and minor league sports teams.
 
Jenny Knox and John Fusco, key members of the Philadelphia event committee have shared the story of their journey and offer wonderful advice to members of the WS community who may want to plan something similar. All types of teams offer similar opportunities for fundraising, awareness and fun!  Email or call (248-244-2229) the national office today for your copy of the "tips, tricks and procedures" that Jenny and John have provided for creating a great event in partnership with sports teams in your area.  And if you're wondering how a sports event can be "extra special," just ask Michael Haegele and Jimmy Melchionna.  They are proud to be among the elite group of individuals who have had an opportunity to throw out the first pitch at a major league baseball game.  Added to that, Williams syndrome was featured on the stadium jumbotron with the beautiful faces of those with Williams syndrome along with quick facts about WS starting off everyone's evening at the ballpark - the delight of seeing your child's picture on a giant screen and hearing the crowd roar in appreciation is extra special for every family in attendance!
 
We'd like to thank the Philadelphia committee and families, not just for initiating and promoting a great new tradition at the ball park but also for the extraordinary efforts they have made to increase walk fundraising and atttendance in their area to 800 people and $50,000 in annual fundraising revenue in just four years.  We are extremely grateful to the Philadelphia team and to every walk committee and event host or hostess for the WSA.  Whether your event has 20 people or 200 in attendance you making a difference in the lives of individuals with Williams syndrome and their families.
 

Research

“Replays” Intervention Study: Coping Mechanism for Anxiety
 
A child with Williams syndrome may dread going to school because of the possibility of a fire alarm or may be too fearful about the sound of the hand dryer or automatic toilet flushes to go into a public bathroom at the mall, or may worry about the clapping at the end of a show so much that they can’t enjoy it.  Parents may avoid operating the blender or vacuum cleaner when the child is home as the child becomes too distressed or avoid birthday parties because of the singing and clapping. Hair brushing, haircuts, doctor and dentist procedures may all be sources of massive anxiety and distress. The fear and anxiety may get in the way of getting the most out of life.
 
For many years, Dr. Karen Levine has been using an intervention called “Replays” to help children with Williams syndrome and other neurodevelopmental conditions learn to cope with anxiety. This approach includes play and humor to gradually decrease the child’s fear and anxiety in fearful situations. “Replays is based in a combination of gradual exposure, and using the adult-child interaction plus humor, to reduce the child’s anxiety.  I’ve treated many children successfully, with WS and/or other developmental challenges and anxiety, around specific phobias such as hair brushing, electronic hand dryers or clapping at the end of Happy Birthday.  Sensory sensitivities continue but the intense emotional distress and anticipatory fears can very often be treated,” says Dr. Levine.  Clinically, she has found this approach very useful. While there is research support for the key components of this method to reduce a child’s anxiety, including gradual exposure, there has not been formal research about it. Until now!  Through a grant provided by the Williams Syndrome Association, I am working with Dr. Levine, to refine and manualize the intervention by developing a step-by-step guide.  The guide with enable community clinicians to learn how to use this therapy in their work with children with Williams syndrome. We are calling this research-based version of the Replays intervention “Behavioral Play Therapy” (BPT). The BPT manual will be housed on a secure website and will include video examples of the approach to help clinicians see how to use the techniques described. 
 
Over the next few months we will be looking for families willing to travel to Milwaukee, WI for a few days to participate in a research study to look at how helpful the intervention is, and to make video recordings of the intervention approach for use on the secure website. Dr. Levine will be in Milwaukee and will conduct the intervention sessions together with me and my staff. There are funds available for families in need of financial assistance to participate. 
 
We are very excited about this promising approach to treating anxiety and fear in children with Williams syndrome. Doing this research is challenging, however, because of the rarity of Williams syndrome. Treatment studies usually require that children see the therapist multiple weeks in a row, thereby limiting participation to local children. That won’t work well for children with Williams syndrome.  There simply aren’t enough children in any locality for a valid study. Therefore, this work is part of a new and much-needed approach that involves training community practitioners to use the intervention and track the children’s progress on the intervention, so that over time we can demonstrate that the intervention is helpful to children with Williams syndrome and their families. Working with community practitioners will allow us to generate scientific evidence that the intervention is helpful and to further refine the approach to improve its positive impact on children.
 
If you’d like to know more about this research, or you’d like to participate, please contact Dr. Klein-Tasman at 414-229-3060. A flier describing the study can be found here.
 
--Bonnie Klein-Tasman, PhD
 

National Convention 2018

  

PLEASE JOIN US IN BALTIMORE!

WSA National Convention – July 11-14, 2018
Marriott – Waterfront Hotel, Baltimore, MD
 
The convention is just five months away and our committee and staff have been working hard to organize many enriching and fun activities for July 11 - 14 in the Inner Harbor area of Baltimore for #SetSail2018!  Throughout the 60+ educational sessions, you will have the opportunity to join leading experts and members of the scientific community as they share medical, educational and therapeutic developments that can change the trajectory of your child’s life.  Highlights of the 2018 convention include:
  • Keynote presentation by Mike Porath, CEO of TheMighty.com, a digital health community that helps millions facing disability, disease and mental illness.  Mike got his start in journalism at ABC News, where he was the network’s first overseas digital reporter and was awarded the Society of Professional Journalist’s top honor for his reporting in Kosovo. In addition to many other network news positions, Mike is also on the board of directors and fundraising chair of The Dup15q Alliance, a non-profit organization that supports people with Dup15q syndrome like his daughter.
  • An encore of the extremely helpful IEP “Drop-in Center.”  Parents can register for a 20-minute private consultation with a professional advocate to discuss your child’s IEP.
  • Special needs trust consultations.  Parents can register for a 20-minute private consultation with a professional advocate to discuss your special needs trust. 
  • Therapeutic evaluations for infants and toddlers, including introductory sessions on aquatic therapy in the hotel pool.
  • “Lunch and Learn" small group discussions with speakers
  • Opening reception with folk singer, David Roth and much, much more.
  • Specialized children’s programs and sibling sessions.
  • "New Family" area where those who are new to the convention can gather and network.
  • Sessions about ensuring work and housing opportunities for adults with WS.
  • 30+ Exhibitors represetning important resources for every family.
  • "All convention" Block Party in Little Italy - 4 bands, 5 restaurants, stilt walkers, face painters, and much more!
  • $60,000+ in scholarships to help families attend.
  • Inner Harbor attractions just outside our door.
  • Minutes away from Washington DC.
 
WE ARE LOOKING FORWARD TO SEEING YOU IN JULY! Full program will be released the first full week of March--members will be emailed.

For more information on the 2018 national convention, visit our convention page on the website.


Financial Resources for Attending Convention

Did you know that many funding sources are available for families who would like to attend educational conventions and conferences such as ours in Baltimore this year? Have you been wondering where/how to start?  One possible funding source for parents is through your local State Special Education Departments. Every year, an amount of money is allocated in the IDEIA (Individuals with Disabilities Education Improvement Act) budget to support parent involvement. This money can be used as stipends to attend conventions such as the WSA’s #SetSail2018 in Baltimore.  

The first step is knowing how to approach them. First, check your state’s website (some may have an electronic application). If not, write an email or letter to your local director of special education (for those school districts that do not have one, write to the superintendent) asking them to sponsor your attendance as a parent to the convention using the designated IDEIA funds. Explain why attendance at the convention will benefit you and your child and mention that you are a member of the Williams Syndrome Association. Include an overall statement explaining how attending will give you access to medical and educational professionals who will be providing invaluable information not offered anywhere else. Print our materials describing convention: williams-syndrome.org/convention if the application allows you to attach files or send additional information.

In addition to school districts, there are many other sources for funding within your community (especially when you know people personally).  Possible resources include:

  • Regional Centers
  • Developmental Disability Councils
  • Local clubs such as Lions, Elks, Rotary and Kiwanis
  • YMCA, YWCA
  • Area women’s and men’s clubs
  • PTA
  • Teachers’ organizations
  • Business associations
  • Chambers of Commerce
  • Church groups
  • The Urban League
  • University alumni groups with which you or your network may be connected

When you approach a local group yourself or ask a representative of a group to champion your cause, you’ll need to prepare a "proposal." Below are samples of statements to include: 

1.    A summary statement: I am asking for your financial assistance to provide travel and convention funding so that I may attend the 2018 National Convention on Williams syndrome, hosted by the Williams Syndrome Association. 

2.    Why it will be beneficial: More than 50 educational sessions will be provided over four days.  The sessions will be conducted by medical and education professionals who provide valuable information on this rare condition. It is also a time for families to come together and learn and network with one another.

3.    A statement of your goals in attending the conference: (perhaps list some of the sessions and what you hope to learn from them and how you will apply them to your child’s care and education).

4.    A detailed budget: "Our plane tickets will cost $_____. Registration for the convention will be $_____, as I plan to pre-register in order to benefit from the lower registration cost. My hotel bill will be $_____ per night. Taxi or Uber/Lyft fare from the airport (round trip) will be $_____."  If possible, don;t ask them to cover ALL costs.  Funders like to know you are providing some of the funding yourself or from other sources.

Funding is never a sure thing, but armed with the right tools, you will have a much better chance for success!  Good luck!  We hope to see you in Baltimore!


 

 

 

 

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