A Parents’ Story By Mette Bau & Pål Heick Listening to Learn, Copenhagen – 2007

Agenda: Chapter 1 – The neonatal screening Chapter 2 – The first year Chapter 3 – Post implant and current status Chapter 4 – We wish…

The neonatal screening

Chapter 1 – Positive Things Contact to other families Family and friends supported us Meeting professionals at Gentofte Hospital

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

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about CI We got no list of contact families The information available on the internet was very confusing – either outdated or biased

The first year

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

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

Post implant and current status

Speech Development

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

Speech Development 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 like ihh, uhh, mama, ajaja, didi

Speech Development 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

Speech Development 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 Lova’s nose?’, Where is the teddy bear?’ Used 24 words Understood around 90 words

Speech Development 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

Post implant and current status

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

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.

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

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 don’t 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

We wish that… …working with the system is a matter of cooperation, not an eternal battle.