2019 ASF Conference Session Descriptions

Wednesday, July 24 Sessions

 

Sibshop – For Siblings Only (ages 5 – 18+)
Noon – 4:00 pm


Sibshops are lively, pedal-to-the-metal celebrations of the many contributions made by brothers and sisters of individuals with special needs.

This Sibshop will be led by Dr. Robin Wilkerson. Not only is this Robin’s professional field of expertise, she also has a beautiful daughter with Angelman syndrome.

Sibshop is an exciting program just for brothers and sisters of people with special needs. At a Sibshop, brothers and sisters will:

  • Meet other brothers and sisters of people with Angelman syndrome
    Have fun!
  • Talk with others who “get it” about the good (and sometimes not so good!) parts of having a sib with special needs
  • Learn more about Angelman syndrome and the services that people receive.
  • Have some more fun!

SIBSHOPS is a nationally acclaimed program that provides peer support with a recreational environment. It’s designed to celebrate the many contributions made by brothers and sisters of people with special needs! Each workshop encourages siblings to participate in activities that encourage sharing laughter and fun!! Siblings will have a chance to meet others whose brother or sister have Angelman syndrome and talk about the good and not-so-good parts of having a sibling with Angelman syndrome.

 

Just for Moms Royal Tea Party
4:15 pm

Let’s take this session to a new, royal level! Come to the ASF Conference prepared to join the Royal Order of the Angelman Society. (Audrey Angelman would be so proud of us all!)

The session is designed to provide an uplifting and supportive “royal” setting for moms to meet, share tips, and bond!

So… Start Shopping Moms! Formal attire is NOT required at the session, but let’s bring a hat or fascinator to wear! (Of course, it isn’t mandatory, but…) There are PLENTY of inexpensive hats for sale on amazon.com or department stores. Just Google “hats for teas” to get started. AND… since this is Louisville, some of you can brush off your Kentucky Derby hats!

The Marriott may not be Buckingham Palace, but the women in attendance at the Royal Tea Party will be “Queens for the Day”!
 

 

Friday, July 26 Communication Sessions

 

 

8:30 am – Communication starts with listening

Children with Angelman struggle with communication. It is so easy for them to go unheard or be misunderstood. This session will explore simple hands-on tools to help everyone around them be better listeners. You will have a chance to start filling in a simple communication template. These tools help everyone your son or daughter respond in a consistent way, so that they are better understood.

Expressive communication chart framework:
In this context, when the person does X, we think it means Y, and you should do Z.
e.g., when entering a room, Maggie stops at the threshold and beats her hand under her chin, we think it means she is anxious about the noise level or level of brightness, and you should dim the lights and wait for the room to quiet before encouraging Maggie to enter.

Receptive communication chart framework:
When we need to tell the person X, we do Y, and its supported by Z.
e.g., when we need to tell Maggie that there has been a change in the schedule, we model her AAC with the pathway “more to say/I’m telling you something/it’s going to happen/etc.

 

 

9:30 am – I do, we do, you do: Speak AAC to teach AAC

There is only so much that a person with Angelman can communicate with their body. They need technology to share everything else. Teaching our children to use technology to communicate starts with us learning to use the same technology we want them to use. We cannot rely solely on talking to our kids with speech if they can’t use speech themselves. We need to talk to them in a way that they can talk back. This session will review how families use communication technology (AAC) at home.

 

 

10:45 am – Communication is how we PLAY!

Using AAC technology doesn’t have to be work! In fact, our kids will use it best if we make it fun and playful. This hands-on session will be your opportunity to see how we use AAC in a range of activities you probably already do at home. Come explore what using AAC at home can look like.

 

 

 

1:15 pm – How do families keep going with AAC?

Learning to use AAC is as easy as going on a diet. On paper, it’s super easy: just plan ahead, eliminate unhealthy foods, and follow health eating guidelines. In reality, we all know it is a huge challenge! Success with AAC means we have to learn new routines and new habits. It isn’t complicated, it’s just hard to learn to do something completely new. Come hear from families who have been able to make AAC another language spoken in their home.

 

 

2:45 pm – Partnering with schools and professionals

You’ve selected an AAC system. You’ve learned to use it at home. Now, how do you get the school and therapists on board with what you are doing? This session will explore how families can navigate the service system to get support with AAC.

 

 

4:15 pm – Communication Autonomy in Action: Hands-on, in-depth experience session

People with Angelman use AAC when it helps them share their ideas, connect more deeply with others, and have real choices and control over their lives. This session will focus on how we can use AAC technology to make our sons and daughters more powerful and better understood. We will explore a simple hands-on tool that will help our kids participate in real decisions. Come see how to get beyond “motivators” to foster the most important communication.