1. QUILTING FAMILY STORIES
Graciela Ferioli
Yvette Gallegos
Namita Jacob

2. QUILTING FAMILY STORIES
● Why did we use this word quilting?
● Whose words will you hear?
● Why do you see Square Paper on your chair?

3. THINKING BEYOND PARENTS
https://docs.google.com/presentation/d/1-CHI074JF4d-D-UXhn20IfuylAGt8LVrvOZzExQpRDA/edit#slide=id.g5cef71993e_2_107

4. CHALLENGES SOLUTIONS
ISOLATION - Promote the creation of “Siblings groups”
- Encourage virtual or presential meetings
- Use social media: facebook & whatsapp groups
LACK OF SERVICES - provide information about other sibling (DbI Sibling
network / Perkins activities with siblings)
- Organize different activities for siblings from early ages
- Mediate or promote contact between them
ACCESS TO
INFORMATION
- Through the Parent Associations Argentina & Venezuela
https://www.facebook.com/appsmaargentina/
https://www.facebook.com/massiel.requena.5243
Radio:Rompiendo Esquemas from Argentina
https://www.facebook.com/rompiendoesquemasdesdelaplata/
THINKING BEYOND PARENTS

5. LOVE IS NOT ENOUGH
https://docs.google.com/presentation/d/1-CHI074JF4d-D-UXhn20IfuylAGt8LVrvOZzExQpRDA/edit#slide=id.g5cef71993e_2_111

6. CHALLENGES SOLUTIONS
ISOLATION - Help them focus on “all their child CAN”
- Social Media: facebook, whatsapp groups
- Promote team work (transdisciplinary approach) between
health and education departments
- Create opportunities for parents gatherings like “School for
parents”
LACK OF SERVICES - Promote the creation of parents groups
- Switch from the therapeutic perspective to a view of the
“Whole Child” in our early education services.
- FB “Red Padres Múltiple Discapacidad México
ACCESS TO INFORMATION - Give access to the written material that has already been
translated into different languages.
- Share links from other countries:
- WONDERBABIES.ORG
- California deafblind services
- Refer them to Parent organizations that have already been
working in this field like the Venezuelan facebook page.
LOVE IS NOT ENOUGH

7. BALANCING FAMILY DREAMS
https://docs.google.com/presentation/d/1-CHI074JF4d-D-UXhn20IfuylAGt8LVrvOZzExQpRDA/edit#slide=id.g5cef71993e_0_1

8. CHALLENGES SOLUTIONS
ISOLATION ● Social Media: facebook, whatsapp groups
● Connect with adults who are deafblind
● Connect families with parents of children with
other disabilities
● Connect with other families or family groups in the
region
LACK OF SERVICES ● Advocacy through disability and child rights
movements
● Use online communities to guide service providers
● Use community volunteers to support in school
● “Be the change you want to see in the world”
ACCESS TO
INFORMATION
● Website for everything!
● Google translate for language limitations
● Free online courses
● Push to bring knowledge into teacher and health
professional education
BALANCING FAMILY DREAMS

9. QUILT´S NAME:
CELEBRATING THE ALLIANCES
BETWEEN THE FAMILIES AND
PROFESSIONALS AROUND THE
WORLD

10. Alex has taught us that when walking
with him, the distance is less important
than how well his feet touch the ground.