A Parents

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A Parents Story

• By Mette Bau Pål Heick
• Listening to Learn, Copenhagen 2007

2
Agenda

• Chapter 1 The neonatal screening
• Chapter 2 The first year
• Chapter 3 Post implant and current status
• Chapter 4 We wish

3
The neonatal screening
4
Chapter 1 Positive Things

• Contact to other families
• Family and friends supported us
• Meeting professionals at Gentofte Hospital

5
Chapter 1 Negative Things

• Professionals around the neonatal screening
  seemed unable to handle our sorrow
• We were left alone most of the time during the
  tests, and the only information we got was the
  body language of the professionals
• When the final results came there was no
  procedure to help us handle the crisis we were in

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Chapter 1 Negative Things

• There was no updated information on CI handed out
  to us at the hospital
• We got no contact information to professionals
  with knowledge about CI
• We got no list of contact families
• The information available on the internet was
  very confusing either outdated or biased

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The first year
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Chapter 2 positive things

• Information from Gentofte Hospital phone, mail
  and personal visits.
• Participation in a parental support group
• Visiting other families
• Coaching in auditory stimulation gave us tools
  and ideas
• Lova became more and more lovely every day ?

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Chapter 2 Negative Things

• Different contact persons with contradicting
  opinions
• Difficult to be thrown into a world of hearing
  loss divided in two camps
• The fact that the system is (still) oriented
  towards signing and specialized institutions. It
  seems like the system acts from tradition rather
  than making decisions based on new research
• No certified AVT offer in Denmark
• The fight to get appropriate speech therapist
  resources in a normal day care

10
Post implant and current status
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Speech Development
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Hearing age 5 weeks (1 month) Lova is 13 months
old

• The first word Hej (hi)
• Identified sound direction correctly in 90 of
  the time
• Imitated mouth movements

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Hearing age 12 weeks (3 months) Lova is 15
months old

• Produced sounds of 10 animals
• 6 words hi, no, up, auch, mum, dad, hot
• Understood words like sleep, food,ball, shoe,
  foot, flower, car
• Made a lot of different sounds likeihh, uhh,
  mama, ajaja, didi

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Hearing age 16 weeks (4 months)Lova is 16 months
old

• Started to say multi syllable words like bamse
  (teddybear), lampe (lamp)
• Started canonical babbling (combined ma/ba,
  didi/do)
• Heard distant sounds (birdsong, airplanes, dogs
  etc)
• Used 10 words
• Understood around 70 words

15
Hearing age 22 weeks (5 months) Lova is 17
months old

• Heard whispers
• Heard across longer distances
• Looks in book when reading not on the face.
• Understood many questions fx Where is Lovas
  nose?, Where is the teddy bear?
• Used 24 words
• Understood around 90 words

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Hearing age 27 weeks (6½ months) Lova is 18
months old

• Reproduced all Ling sounds
• Understood and acted on complex instructions fx
  Can Lova take the diaper to the bin?, Can Lova
  feed the doll?
• Used language actively with both children and
  adults.
• Babbled all day long at home and in day care
• Used 2-word sentences hello mom, no dad, come
  mom, bye bye book
• Started to use 3-word sentences Where is
  ball?, There ball mum!
• Answered yes/no to questions more water?
• Used 70 words
• Understood around 170 words

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Post implant and current status
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Chapter 3 Positive Things

• Bilaterally implanted at the age of 11 months
• Attending normal day care
• Meeting speech therapists with high expectations
• Lovas development in hearing, speech and social
  skills

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Chapter 3 Negative Things

• No rehabilitation at the CI centre - only tuning
• The need to fight for every choice you make
• Still meeting professionals with low expectations
  for CI children.

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We wish that
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We wish that

• the infant screening program will continue in
  order to find children early
• all involved professionals are trained to handle
  sad and frustrated parents
• parents are offered counseling automatically and
  promptly
• parents are offered a list of contact families at
  day one
• the information material is up to date and
  matched to different target groups
• parents are automatically and promptly offered
  coaching in auditory stimulation
• parents are advised in accordance with the latest
  research
• local speech therapists act in accordance with
  the guidance from the CI centers

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We wish that

• parents are guided by professionals with high
  expectations
• parents are more closely connected to the CI
  centers in the rehabilitation process
• parents are guided on what kind of resources they
  can get from their local district - economically
  and practically
• parents dont have to fight to get sufficient
  resources in a normal day care
• parents are offered auditory training courses
  within the same criteria as courses in signing
• parents can get a pure AVT offer from the early
  start
• parents are met by a professional world that will
  stop fighting and arguing about CI children- and
  instead just use the resources to help the
  parents and teach the children to speak

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We wish that

• working with the system is a matter of
  cooperation, not an eternal battle.

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