Cochlear implants in childrenParents in charge of development..

Tbilisi September 2014

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

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?

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.

Cochlear implants in children; it´s all about..

• Challenges• Expectations• Change in a new era of deaf

education• Being a realist• Being an optimist

But remember!

Parents need professionals to encourage them. Not the opposite!

Children need professionals to encourage them, raising expectations

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!)

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

• 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.

The history of deaf education is changing…

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

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”

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

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…

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)

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

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

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)

BARNPLANTORNA (parent

organisation) in charge of the development!

Key word: up to date!

But..

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

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

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..

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)

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

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

..so who is in charge of the development ..?

Of course; we all are!

Thank you for listening