The document discusses the development of cochlear implants in children and who drives this development. It argues that inquisitive parents, through organizations like Barnplantorna, are leading the charge by demanding up-to-date rehabilitation, schools, and support that allows deaf children to participate fully in society. These empowered parents collaborate with devoted doctors and professionals to advance opportunities for children through bilateral implants, screening programs, and more. Continued progress requires lifelong support through partnerships between parents, organizations, and experts that place children's needs and development at the center.

1. Cochlear implants in children
Parents in charge of development..
Tbilisi September 2014

2. Creating history – what
was needed?
• A child deaf after meningitis-my daughter
• Parents not looking for answers ’why’ but
searching for solutions prepared to do
whatever it takes..
• Devoted doctor in Sweden– Sten Harris
• Devoted speech pathologist, technical
audiologist etc.
• Establishing of a parent organisation –
BARNPLANTORNA in 1995

3. Who is in charge of the development of cochlear
implants in children?
The parents?
(or children!!!)
Doctors in the CI clinics?
Other ”experts” (teachers,
speech therapists etc)?
MANUFACTURERS?

4. Has medical technological
development given us a
different point of view in
deafness?
Maybe/maybe not! The medical development has
given deaf children opportunities to participate in
our society to a larger extent than before if we all
are ready for the CHALLENGE (and liberate us
from the attitudes.

5. Cochlear implants in children; it´s all about..
• Challenges
• Expectations
• Change in a new era of deaf
education
• Being a realist
• Being an optimist

6. But remember!
Parents need professionals to
encourage them. Not the opposite!
Children need professionals to
encourage them, raising expectations

7. Looking back to understand (Swedish view)…..
•1991 first child in Sweden with CI. Child with
aquired deafness. Parents had to ”fight” for
cochlear implant. Emigrate to USA?
•1993 the first deaf born child with CI. Parents
talking to each other and contacting the doctors.
•1995 The Swedish organisation ”Barnplantorna”
for parents to cochlear implanted children is
established. Together we are strong!
•The beginning of the new millenium children
having the opportunity to hear in both ears!
• 2007 Barnplantorna parent organisation for
children with CI, ABI, Baha, HA (hearing aids)
etc… (all children that can develop hearing!)

8. Global attention
All children (nearly) in Sweden can have
bilateral CI!
This decision was a result from an unique
cooperationship between inquisitive and
determined parents, Barnplantorna and
one ”CI doctor” (Eva Karltorp in
Stockholm).
The attention from newspapers and TV
was an unvaluable help on the way…..
Key word: Cooperationship

9. The history of deaf education is changing…
• History is describing a process from the
past into the future…
• It is the parents, children and
teenagers forming this change..
It is about cochlear implant one of the
largest technological advances in modern
time concerning recreating one of the five
senses.

10. Parents today different than in 1940!
•Parents are searching for knowledge through
- other parents (personal contact, Facebook,
Twitter etc)
- organisations
- health care system (hospitals)
- Internet
CONCLUSIONS:
Today we have a new kind of parents that do not
accept the advices from ”experts”. They are using
the great ”bank of knowledge” (Internet) of today to
make wise decisions concerning their children.
Key word: Cooperationship

11. The inquisitive parents
are in the drivers seat….
Preparing their children to be an
active part of our mutual society in
2014, 2020, 2030 etc
But we still have problems
”The road is not a highway to the
goal”

12. Inquisitive parents are demanding:
• different rehabilitation for deaf and hearing impaired
children; AVT (Auditory Verbal Therapy) etc not only sign
language
• different preschools and schools – more support in local
schools. not only preschools and schools for the deaf
• professionals must regard parents as cooperation
partners. Eliminate the point of view; leave the child to
the ”experts” – be a parent
• cooperationship between habilitation –
preschools/schools and CI-clinic
Key word: Cooperationship
Chris Rocca, ”music time” in
Barnplantorna family course

13. Hearing technology development
is moving fast resulting in
a range of individual hearing aids/implants
such as
-CI, BAHA, ABI, middle ear implants
- softisticated hearing aids
- sound field systems in preschools and
schools etc
And…

14. Research from the new era of deaf
education
”shows that the identification of hearing loss by six months
of age, followed by appropiate education and early family
intervention programs, is the most effective strategy for
language development in deaf and hard of hearing infants
and toodlers regardless of degree of hearing loss, gender,
presence of secondary disability, socioeconomic status,
mode of communication chosen by family”
(John Tracy Clinic Los Angeles/USA)

15. Parents are information ambassadors for their children
together with Barnplantorna organisation!
Knowledge gives parents confidence to demand
• optimal individual habilitation that is up to date!
• courses for parents that is up to date!
• participation in the training with the child that
professionals do
• child centrated preschool and school
• parents demand respect for the decisions they do for
their child

16. Barnplantorna organisation information spread
knowledge
• Organises courses/conferences for
professionals, parents
• Distributes brochures, newsletters
• Organises network groups between
parents and professionals
• www.barnplantorna.se had 70 000
visitors 2010 (Sweden has 9 million
inhabitants)
Key word: Cooperationship
Nordic Conference in Sweden 2010

17. Barnplantorna achievements
• Bilateral implants for children! (media campaign cooperationship parents - doctors)
• National hearing screening programme! (initiated by Barnplantorna)
• Pneumoccocal vaccination for all newborn children! (media campaign
together with doctors)

18. BARNPLANTORNA (parent
organisation) in charge of the
development!
Key word: up to date!
But..

19. We still have problems!
Parents keep climbing up the
hills of prejudice and attitudes
claiming that
”our children are not a
dilemma in deaf political
discussions” !!!
I love my child

20. Parents reflections in a conference in Copenhagen in
2007. Could be Sweden 2014!
• We did not get any support from the
”professionals”. They seemed to be involved in
a mutual fight concerning sign or not to sign;
your child must become bilingual
• Professionals seemed to lack an up to date
knowledge
• Professionals expectations seemed far to low

21. What is happening when parents are creating a new
chapter in deaf history?
• deaf children hear and attend mainstream schools
• parents demand support in local schools
• new strong organisations like ”Barnplantorna” is established all over the
world raising expectations and demanding change
• increasing amount of deaf children will integrate in our mutual society
BUT..

22. Children – teenagers - adults
need lifelong support concerning
• processor – implants
• reimplantation – when?
• hearing equipment for better hearing in noise like FM/digital
system etc
• support from all of us to develop self esteem
• understanding out in the society (up to date information
about CI)

23. The success of deaf/hearing impaired
children 2014 depends on
• Strong parents creating and
demanding good education and
habilitation (family intervention) for their
children..
• Parent organisations like
Barnplantorna supporting and
representing the families

24. Conclusions
The word ’deaf’ means another thing today. It is the same word as in
1940 but a different contex.
Everyone has to liberate himself from attitudes and prejudice.
If we want different outcomes today in 2014 for deaf children we have to
adapt ourselves to cochlear implant a new sense of hearing

25. ..so who is in charge of the development ..?
Of course;
we all are!
Thank you for listening