A Guide to Designing a SPARKLE Boot Camp

Patti McGowan Molly Black

& Clara Berg

1  

A Guide to Designing a SPARKLE Boot Camp 

The PaTTAN Pennsylvania Deaf-Blind Initiative and the New York Deaf-Blind Collaborative have combined efforts to assist other State Deafblind Projects in supporting families as they complete the SPARKLE units, by providing a one-day training on the SPARKLE study materials. Invitation to Participants by State Facilitators:  An invitation is sent out to parents of children with deafblindness. See Example of Letter of Invitation I, II, III (Spanish) and Example of Save the Date. Room Set Up:  Establish a warm, welcome environment for family participants. Provide coffee, tea, and water throughout the day. If financial resources are available, you can also provide a continental breakfast and lunch. A casual, comfortable, and informal approach to the day should be established quickly. Icebreaker, Introductions, and Welcome:   Because time is of the essence with a full day of study planned, it is important to keep introductions short to be respectful of the time constraints. However, it is also important to get to know each other. Since introductions have a tendency to run long when parents share about their children, invite them to share about their children throughout the day. Remember that sharing will naturally occur during the planned activities. See Document 1 for an example of the introduction. Agenda:   As we have conducted several Boot Camps now, we have made modifications to our agendas. Enclosed are samples of the agendas that have been used thus far. You will notice how they have been changed and tweaked a little, as we’ve tried to make improvements in the training day. See Document 2 for agenda examples. Simulations:   As technology has rapidly improved, we have enhanced the Vision and Hearing sections of the SPARKLE materials by introducing a simulation activity for each of these sections. See Document 3, Ideas for O & M, and Document 4, Table Top Simulations for Vision, Hearing, and Touch Exercises.

2  

Participants’ Engagement:  As we progress through each unit, we take turns reading each training question and answering it together as a group. This way, discussion happens naturally, and clarification happens on the spot. We encourage families to share information about their children’s hearing and vision losses, their tests results, and which devices their children use, both at home and in educational settings (e.g., FM systems, cochlear implants, hearing aids, white canes, braillers, etc.). During the Concept Development Unit, we use an additional exercise to help participants identify the difference between “a concept” and “a skill” through role-playing about concepts and skills in daily life. After viewing this section, we have participants choose a partner and discuss a personal example of a concept and a skill, so as to help them increase their understanding of the difference between the two. Child Profile: Admittedly, we have found it difficult, due to time constraints, to do much more than introduce the Child Profile. So far, we have been able to explain the importance of the Child Profile and then send the Child Profile Template on either a CD or a USB jump drive home with the participants. Participants are then expected to complete the Child Profile on their own time for their own personal use. Guest Speakers:  We have included a guest speaker at each one of our Boot Camps so far. These have included representatives from our Parent Training and Information Center and Educational Consultants. At future Boot Camps, we hope to be able to include an Audiologist to explain the audiograms of the participants’ children. These guest speakers are invited to share during a working lunch, so that no time is taken away from the SPARKLE materials. We encourage all guest speakers to bring handouts and resources to share with the parents. Evaluations:    By having participants complete an evaluation at the end of training, you can see what the strengths and weaknesses of the training are and then adjust your next Boot Camp accordingly. See Document 5 for an example of an evaluation form. Certification of Completion:  It is important to thank participants and to acknowledge their completion of training by giving them a certificate at the end of the day. See Document 6 for a sample certificate. Families are encouraged to take their SPARKLE materials home and share them with their school teams and extended families. These materials are intended to be a lifetime resource for families of children and youth with deafblindness, which can be used and reviewed as often as needed. For example, a child’s vision may deteriorate with an RP diagnosis, and the family may want to review the vision section again at a later date when it may be more relevant to their situation.

         

Examples of Letters of Invitation I, II, III (Spanish) And 

Example of “Save the Date”      

 

   

Project SPARKLE Boot Camp

Want to understand how your child sees, hears and understands? 

You are invited to participate in Project SPARKLE (Supporting Parent Access to Resources, Knowledge, Linkages and Education) by attending a Project SPARKLE BOOTCAMP, December 4, 2010 at the King of Prussia PaTTAN Office. This is a Learning Program for parents who have children with a combined vision and hearing loss, also known as Deaf-Blindness. Patti McGowan, parent of a son with Usher Syndrome, and Molly Black, parent of a son with Cornelia de Lange Syndrome, are the State Facilitators in Pennsylvania. They are available to answer your questions regarding this training and will lead the Project SPARKLE Boot Camp. Comments from past SPARKLE families-

“It was great! Easy to use…relevant… knowledgeable… affirming to us as parents!” “I thought I knew a lot about deafness and blindness, but this was new information and I

really learned a lot!” “The use of video footage of deaf-blind children spoke to the viewers more than words

alone could have been able to do” The PA Deaf-Blind Initiative will sponsor your training free of charge and provide you with the SPARKLE Parent Guidebook, Training, DVDs and USB drive. Areas of study will include:

Deaf-Blindness – What is it? Does it really describe my child? How can we compensate for my child’s vision and hearing loss?

Vision – How vision works; vision problems; vision professionals; impact of combined vision & hearing loss; vision loss adaptations & devices

Hearing - How it works; hearing problems; hearing professionals; hearing testing; hearing loss adaptations and devices Touch - The importance of touch; early experiences with touch; tactile sensitivity; using touch as the basis for communication Concept Development – Concepts are the ideas that help us understand the “why” and “meaning” of things. The way our children with Deaf-Blindness learn. Intervention – A critical issue to be addressed when considering appropriate intervention is to look at the environment as a whole.

In addition to this instruction, the Child Profile concept (portable medical/educational records and information) will be introduced with examples. A USB drive will be provided for you to take home and work on at your personal convenience, in order to share with your educational and medical teams.

Additional opportunities for your personal use:

Connect with other SPARKLE listserv participants nationally. Translate medical and educational reports with the Glossary of Terms. Read family stories in the “Family Room”. Watch and listen to more experts in the “Video Library”.

The Boot Camp Training will be held on December 4, 2010 at the King of Prussia 200 Anderson Road, King of Prussia, PA from 9:30 to 3:30pm. Lunch will be included. Please RSVP by November 15, 2010 to Molly Black mblack@pattan.net 724-863-1283 or Patti McGowan pmcgowan@pattan.net 724-864-2553 Sincerely, Patti McGowan Family Liaison, PA Deaf-Blind Initiative

Presenter: Patti McGowan, Family Liaison, Pennsylvania Deaf-Blind Initiative

Deaf-blindness • Vision • Hearing • Touch

Name(s): _________________________________________________________ Address: _________________________________________________________ Home Tel: _______________________ Cell: ____________________________ Email address: ____________________________________________________ Name of Child: ___________________________________ Age: _______ Special Needs: □ Language Translator: _________________________ □ Dietary restrictions or allergies: ____________________________________

Lunch will be provided by NYDBC

Please Note: NO childcare or children’s program will be offered at this training.

September 17, 2011

10:00am—5:30pm

Project SPARKLE Boot Camp

Queens College

Rosenthal Library

President’s Conference Room #1

Registration Form

Photo Release

I give the New York Deaf-Blind Collaborative permission to photograph and use photo-graphs of myself for [check the one(s) for which you give your permission]: ________ To be used by the project for the training of professionals and families, on dif-ferent topics in the area of deaf-blindness in an electronic or print format that is accessible only to those families and professionals that the project staff gives specific permission to. To use photographs in a publicly accessible manner, on website or in another electronic or print format to raise awareness of deaf-blindness in general or about specific topics in deaf-blindness such as communication or mobility.

Participant’s Name:

Signature:

Date:

Participant’s Name:

Signature:

Date:

Return completed form to Clara Berg, NYDBC, Queens College—PH 200, 65-30 Kissena Blvd., Flushing, NY 11367 or fax it to 718-997-4883

(must bring this form with you on 9/17/11)

You will walk away with:

SPARKLE Child’s Profile

SPARKLE DVD

USB Flash Drive

Invaluable Knowledge

Please contact Clara Berg at 718-997-4855 or at

clara.berg@qc.cuny.edu for more information.

Facilitador: Sra. Patti McGowan, Conexión de Familias del Proyecto de Pennsylvania

Sordo-ceguera • Visión • Audición • Tacto

Nombre(s): ______________________________________________________ Dirección: _______________________________________________________ Teléfono: _______________________ Celular: _________________________ Correo electrónico: ________________________________________________ Nombre de su niño/a: ________________________________ Edad: _____ Necesidades especiales: □ Traductor: _________________________ □ Alergia o restricciones dietéticas: __________________________________

Almuerzo será provisto por NYDBC

Favor Notar: NO Habrá cuidado de niños y no habrá actividades para niños durante este entrenamiento.

17 de Septiembre, 2011

10:00am—5:30pm

Campamento de Entrenamiento del Projecto SPARKLE

Queens College

65-30 Kissena Blvd

Powdermaker Hall 106

Flushing, NY 11367

Registración

Favor devolver el formulario completo a Clara Berg, NYDBC, Queens College—PH 200, 65-30 Kissena Blvd., Flushing, NY 11367 o por fax al 718-997-4883

(o favor de traer este formulario con Ud. el dia del entrenamiento)

Ud se llevara:

Perfil del Niño

DVD de SPARKLE

Puerto de memoria USB

Conocimiento Invalorable

Para mas información favor llamar a Clara Berg, 718-997–

4855 o por correo electronico a “clara.berg@qc.cuny.edu“

Consentimiento Fotográfico

Yo le doy al New York Deaf-Blind Collaborative permiso para fotografiar y usar fotos de mi persona por una o más de las siguientes razones. [Marque a cual(es) Ud. da permiso.] ______ Para el uso de NYDBC para entrenar a profesionales y familias, en diferentes tópicos en el área de sordo-ceguera en un formato electrónico que será accesible solamente por las familias y profesionales y a quienes el proyecto le de permiso. Para usar fotografías de mi persona de manera pública, en su página web u otro formato electrónico para diseminar información acerca de sordo-ceguera en ge-neral o tópicos específicos de sordo-ceguera tal como comunicación o movilidad.

Nombre:

Firma:

Fecha:

Nombre:

Firma:

Fecha:

Queens College

Rosenthal Library

President’s Conference Room #1

To register or for more information, please contact Clara Berg

at 718-997-4855 or at clara.berg@qc.cuny.edu

Calling all Parent Leadership Training Graduates

and Leaders

NYDBC is sponsoring this training free of charge and will provide

you with SPARKLE (Supporting Parent Access to Resources,

Knowledge, Linkages and Education) Child’s Profile, DVDs, and

USB drive. Patti McGowan, Family Liaison, PA Deaf-Blind

Initiative, will lead this training.

The training will cover:

Deaf-blindness—What is it? Does it really describe my child? How

can we compensate for my child’s vision and hearing loss?

Vision—Impact of combined vision and hearing loss; vision loss

adaptations and devices.

Hearing—How it works; hearing problems; testing; hearing loss

adaptations and devices.

Touch—The importance of touch; early experiences with touch;

using touch as the basis for communication.

Concept Development—Concepts are the ideas that help us

understand the “why” and “meaning” of things.

Intervention—A critical issue to be addressed when considering

appropriate intervention is to look at the environment as

a whole.

You will :

Make Mew Friends

Renew Old

Friendships

Gain new insight

Reaffirm your value

as parents and

leaders

September 17, 2011

10:00am—5:30pm

Project SPARKLE Boot Camp

SAVE THE DATE!

Queens College

65-30 Kissena Blvd

Rosenthal Libray

President’s Conference

Room 1

Flushing, NY 11367

          

Example of Parent Introduction Form      

 

   

        Please introduce yourself. 

 

My name is _______________________________________________________ 

I live in ___________________________ County. 

My kids are _________________________(ages of your children). 

I came SPARKLE Boot Camp today because:  

___________________________________________________________________

___________________________________________________________________

___________________________________________________________________ 

         

Examples of Agendas     

 

   

PaTTAN PA DEAF‐BLIND INITIATIVE 

SPARKLE BOOT CAMP 

DECEMBER 4, 2010 

 KING OF PRUSSIA, PA 

 

  9:30 –   9:50   Welcome and Introductions 

  9:50  –10:15  Deaf‐Blindness 

10:15 ‐  11:00  Vision 

11:00 – 11:45  Hearing 

11:45 – 12:15  Kathy Stocki, Pennsylvania Education Network (PEN) 

12:15  ‐   1:00  Lunch 

1:00  –     2:00  Touch 

2:00   –    2:30  Concept Development 

2:30  –     3:15  Intervention (SaS Toolkit, Interveners)   

 3:15  –    3:30  Child Profiles/Q & A/Evaluations           

               

PaTTAN PA DEAF‐BLIND INITIATIVE 

SPARKLE BOOT CAMP 

APRIL 2, 2010 

 WESTERN PA SCHOOL FOR BLIND CHILDREN, 

PITTSBURGH, PA 

 

  9:00 ‐   9:15   Welcome and Introductions 

  9:15 ‐ 10:00  Deaf‐Blindness 

 10:00‐ 10:45  Vision 

10:45 ‐ 11:00  Break 

11:00‐  11:30  Hearing 

11:30 ‐ 12:15     Touch 

12:15  ‐ 1:00  Lunch  ‐   

  1:00  – 1:45   Pennsylvania Education and Advocacy Leadership 

Center (PEAL) 

 1:45  –  2:30  Concept Development 

 2:30   – 3:15  Intervention (SaS Toolkit, Interveners) 

 3:15  –  4:00  Child Profiles/Q & A/Evaluations         

SPARKLE – BOOT CAMP  

Draft AGENDA #1 with Time Allotments  9:30 – 10:00   Registration and coffee 10:00 – 10:15  Welcome and Introductions 10:15 – 10:50  Deafblindness 10:50 – 12:20  Vision (simulation)   (with 30 minute break) 

12:20 – 1:15   Lunch w/special guest or Sensory Perspective DVD 1:15 – 2:15    Hearing 2:15 – 3:45    Touch (simulation)   (with 30 minute break) 

3:45 – 4:45    Concept Development (active participation) 4:45 – 5:30    Child Profiles/Q&A/Evaluations 

 

Topics ‐ Sub Titles  V

ideo

  

(Min) 

Questions 

and 

Discussion

s (M

in) 

Estimated

 Total 

Time per 

Topic 

DEAFBLINDNESS  

‐ Overview   ‐ What is Deaf‐blindness?   ‐ Three critical factors ‐ Impact Of Deaf‐blindness  

  

1:00 2:00 3:30 6:00 

  

5:00 5:00 5:00  

     

35 min.

VISION  

‐ Overview             ‐ How vision works?          ‐ Vision problems            

 Simulation x functional skills (walking around the building, halls, finding a water fountain, finding restrooms, etc.)                               ‐ Impact of Combined Vision and Hearing Loss   ‐ Vision Loss Adaptations and Devices 

  

1:30 6:30 13:00 

     

3:30 9:00 

  

5:00 5:00   

30:00   

5:00 5:00 

          

 1.5 hrs. 

  

Topics ‐ Sub Titles  V

ideo

  

(Min) 

Questions 

and 

Discussions 

(Min) 

Estimated

 

Total Tim

e per Topic 

HEARING  

‐ Overview             ‐ How hearing works?           ‐ Hearing problems           

 Participants input:  What kind of device does your child have? What kind of test did she/he have done? 

  

2:00 7:00 8:00 

  

5:00 5:00   

30:00 

        

1 hr. 

TOUCH  

‐ The importance of Touch        ‐ Becoming Conscious of Touch       ‐ Early Experiences of Touch         ‐ Tactile sensitivity           ‐ Understanding the Hands of the Individual who is DB ‐ Using touch as a basis for Communication            

 Simulations of Table Top Activities, puzzles, games, pouring a glass of water, a cup of coffee, etc.        ‐ Mutual tactile attention   

  

5:30 3:30 4:00 4:30 9:30 10:30 

    

3:50 

 5:00 5:00 5:00 5:00 5:00 5:00  

15:00   

5:00 

            

1.5  hrs.

CONCEPT DEVELOPMENT  

‐ Overview             ‐ What is a concept? What is a skill?        ‐ Six steps of Concept Development       

 Role play among participants giving examples of concept vs. skills    

  

1:30 5:00 5:00 

  

5:00 5:00  

30:00  

       

1 hr.              

SPARKLE – BOOT CAMP  

Draft AGENDA #2 with Time Allotments  9:00 – 9:30    Registration, Welcome and Introductions 

9:30 – 10:00   Deaf‐Blindness 

10:00 – 11:30  Vision and O&M Simulations 

11: 30‐12:15   Lunch w/Special Guest or Sensory Perspective DVD 

12:15 – 1:15   Hearing 

1:15 – 2:30    Touch and Table Top Simulations Hearing 

2:30 – 3:30    Concept Development (active participation) 

3:30 – 4:00    Child Profiles/Q&A/Evaluations 

 

Time Breakdown of Topics  V

ideo

  

(Min) 

Questions 

and 

Discussions 

(Min) 

Estimated

 

Total Tim

e per Topic 

DEAFBLINDNESS  

‐ Overview   ‐ What is Deafblindness?   ‐ Three critical factors ‐ Impact of Deafblindness   

  

1:00 2:00 3:30 6:00 

   

5:00 5:00 5:00  

     

35 min.

VISION  

‐ Overview             ‐ How vision works?          ‐ Vision problems            

  Simulation x functional skills (walking around the building, halls, finding a water fountain, finding restrooms, etc.)                               ‐ Impact of Combined Vision and Hearing Loss   ‐ Vision Loss Adaptations and Devices 

  

1:30 6:30 13:00 

      

3:30 9:00 

   

5:00 5:00   

30:00    

5:00 5:00 

           

 1.5 hrs. 

  

Topics ‐ Sub Titles  V

ideo

  

(Min) 

Questions 

and 

Discussions 

(Min) 

Estimated

 

Total Tim

e per Topic 

HEARING  

‐ Overview             ‐ How hearing works?           ‐ Hearing problems           

 Participants input:  What kind of device does your child have? What kind of test did she/he have done? 

  

2:00 7:00 8:00 

   

5:00 5:00   

30:00 

        

1 hr. 

TOUCH  

‐ The importance of Touch        ‐ Becoming Conscious of Touch       ‐ Early Experiences of Touch         ‐ Tactile sensitivity           ‐ Understanding the Hands of the Individual who is DB‐ Using touch as a basis for Communication         

 Simulations of Table Top Activities, puzzles, games, pouring a glass of water, a cup of coffee, etc.        ‐ Mutual tactile attention   

  

5:30 3:30 4:00 4:30 9:30 10:30 

    

3:50 

  

5:00 5:00 5:00 5:00 5:00 5:00  

15:00   

5:00 

            

1.5 hrs.

CONCEPT DEVELOPMENT  

‐ Overview             ‐ What is a concept? What is a skill?        ‐ Six steps of Concept Development       

  

Role play among participants giving examples of concept vs. skills    

  

1:30 5:00 5:00 

   

5:00 5:00   

30:00  

        

1 hr.  

         

Ideas for Simulations with O&M Activities      

 

   

 

Ideas for Simulations with 

Orientation and Mobility Activities 

1) Take a walk to the water fountain and get a drink. 

 

2) Take a walk to the restroom, wash your hands, find the soap, find the 

towel etc... 

 

3) Simply walk down the hallway. 

 

4) Find the vending machines.  If you have change, go ahead and buy 

yourself a treat. 

 

5) Find the door by which you entered the building this morning. 

 

6) Take a walk to the outside.  What is the weather? 

 

7) Take a break and check your cell phone for calls and/or messages. 

 

 

          

Table Top Simulations for Vision/Hearing/Touch Exercises 

      

 

 

   

 

 

Table Top Simulations for SPARKLE Boot Camp 

r Table Games 

 

r Puzzles 

 

r Matching Objects (buttons, blocks) 

 

r Life Skill Exercises 

 

r Food Preparation 

 

r Pouring a class of water/coffee/tea 

 

          

Example of Evaluation Form      

 

 

   

           

Examples of Certificates of Completion      

 

 

 

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Deafblindness,Vision,Hearing,Touch,

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