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Residential Information Weekend for Families with Newly Diagnosed Deaf Children

On Friday 29th February, DeafHear.ie launched its second Information Weekend for Families with Newly Diagnosed Deaf Children in The Heritage Hotel, Portlaoise. The aim of this weekend was to provide families with relevant information and an opportunity to meet other families in a similar situation to them from around the country.

On the Friday evening the families were greeted in the ‘O’More Suite’ by Róisín Higgins, DeafHear.ie Social Worker and Siobhán Egan DeafHear.ie Family Resource Worker, they were given a ‘Welcome Pack’ which contained a programme of events for the weekend, information on childcare and some DeafHear.ie literature. The evening provided a chance to meet other families, relax and enjoy a meal. The families were asked to take part in some creative activities supervised by Frances Doyle, a local ‘Creative Art and Craft Party Organiser’, this consisted of a variety of things to do for children of all ages, but the parents had to join in and get messy to make handprints in different coloured paint, this became a background for a poem about families which overlaid the handprints and framed, these provided memento’s of the weekend for the families, there were also games, toys and dvd’s to provide entertainment for the children.

On Saturday morning the parents took the children to the childcare provision, which was set up in rooms near the main conference room, the children were allocated a room depending on their age. They were supervised by qualified childcare providers registered with the local HSE and they made available age appropriate activities and equipment to entertain and stimulate the children. Once the children were settled, the parents came together in the O’More Suite to a session lead by Róisín Higgins to discuss their experiences of diagnosis, this was an emotional session for some, but a lot of the parents found it very beneficial to hear other families stories and to could identify with them, one parent said “Good to hear of other families in similar situations as ourselves – to know that we are not alone”, and another said “It is always helpful to hear other people’s experiences, so I found this piece very beneficial and important”

After a coffee break the parents were split into Mothers and Fathers groups, the Mothers groups were lead by Geraldine McEleney and Catherine Caraher, DeafHear.ie Social Workers, and Angela Mitchell, a mother of a Deaf child. The Fathers groups were led by Brendan Lennon DeafHear.ie Regional Manager, Kieran Melican DeafHear.ie Social Worker and Jim Cashen, a father of a Deaf child. This enabled parents to share a variety of experiences with each other in smaller groups, which many parents found constructive. This was the first time many of the fathers had the opportunity to discuss their feelings and thoughts, with one father summing it up by saying “Interesting to find out the view points of other fathers and also to tell the leader of the problems we were all having big issues with”.

Saturday afternoon began with Katherine McIntyre a Speech and Language Therapist who spoke about the role of the S.L.T. and ‘The Hanen Programme’. She began with presenting information about their work:-

S.L.T.’s work with clients, their families and carers in a wide range of settings, community clinics, hospitals, schools and preschools, clients own home, nursing homes and rehabilitation centres, even young offenders institutions! The scope and skills associated with the job gets broader all the time! S.L.T.’s work both directly and indirectly with clients. Directly in working in sessions with them to develop new communication skills, and indirectly in training the client’s communication partners (family, teachers, carers) to manage the communication difficulties in every day life. This can mean parents, teachers, carers, or spouses”.

In the Public System, young children with a Hearing Loss are usually initially offered Services in Primary Care or general community Speech and Language Therapy Clinics. These provide Services for children and young adults 0 -18 years. They are referred there from a variety of sources, Audiologists, Public Health Nurses, Parents, and Paediatricians to name a few.

Some (younger) children are seen by Early Intervention (H.S.E) Services or in more specialised programmes such a Cochlear Implant Department or Schools for the Hearing Impaired. There are limited specialist posts for S.L.T.’s working with children with a Hearing Loss – most are seen as part of a general paediatric caseload.

The general aim of Speech and Language Therapy is to assess, diagnose and treat the communication difficulties that result from the Hearing Loss, (direct intervention) and to train parents, teachers and other carers in strategies to ensure that the child has the maximum opportunities to participate in communication at home and School (indirect intervention).

In the early years, an important focus of Speech and Language Therapy is to train parents, teachers and carers in strategies to support the child in learning communication and language skills in everyday interactions. This is often termed a ‘Hanen’ approach. It is suitable for the younger child who may not have the attention/listening and maturity for more structured speech and language tasks.

As the child gets older and more able to engage and follow structured tasks, they can begin to work directly with the Speech and Language therapist on developing comprehension of language, speech sound/phonetic development, building sentences, and developing correct grammar, following full assessment of these area’s and once an individual therapy plan is put together.

Katherine also spoke about language development and the importance of involving the parents is key to the progress of the child.

The Hanen Approach
This is a Canadian charitable organisation with a global reach – their mission is to provide the important people in a young child’s life with the knowledge and training they need to help the child develop the best possible language, social and literacy skills. They create programmes that teach parents and other caregivers how to promote children’s language development during everyday activities. They train Speech and Language Therapists to run Hanen Programmes for Parents, and use Hanen’s child centred approach in day to day work with families and teachers.

It Takes Two to Talk Programme
is for Parents of children who have language delays – including those secondary to Hearing Impairment. It recognises the importance of having parent’ s fully involved in their child’s early language development, and recognises the need to help families as early as possible in a child’s life. It must be led by a Hanen Certified Speech and Language Therapist who has received specialised training through the Hanen Centre. A ‘Pre Program’ assessment is completed with each family, and this includes an assessment of the child’s current communication skills, a base line videotape of the parent and child interaction, and the setting of some goals for the child’s communication development. More information can be sought from the local Speech & Language Therapy department.

The parents were interested in this session even though the service provision does differ from County to County. “A very good insight to how speech therapists work”, “Received many tips and ideas on speech development”, I especially found the Hanen Programme information very good, and was surprised and pleased to hear common sense works”.

It was then time for Audiological Scientist Dr Dayallen talked to the group about the role of the audiologist and the types of tests carried out. He was extremely accommodating and took questions from the floor throughout his session,

Dr Dayallen topics included Diagnosis of hearing loss in your child, Gold mine in your backyard- You are the primary teacher for your child, Improving the listening of your child Ear & Hearing tests, LING 6-7 Sound Tests, Your child’s progress in auditory development.

He spent some time explaining how to read an audiogram and the importance of wearing good fitting hearing aids.

Parents commented by saying “A very knowledgeable man who was very willing to share his knowledge with us”. “This enhanced my understanding of Audiology further and knowing the difference between different types of hearing aids and options on the Cochlear Implant”. “An excellent presentation by an excellent man”.

Saturday evening everyone met for a meal and this was followed by an entertainer for the children which was provided by the hotel, it was a nice relaxed and entertaining evening.

Bright and not so early on Sunday morning parents gathered to listen to Damien and Tom Owens who are brothers; they talked about their experiences of being a Deaf child in a hearing family and also the experiences of being a hearing sibling of a Deaf child. Damien is deaf, his family do not sign and Damien could lip-read and had good oral skills due to the hard work of his mother and speech and language therapy as a child. He attended St Joseph’s School for Deaf Boys in Dublin, he spoke about how he enjoyed being at school and felt he could identify with the Deaf Culture, but coming home at weekends was sometimes difficult as he did not have any friends of his own and relied on his brothers, this was more of an issue when he was in his teens. Tom then spoke about his experiences, he said that although he knew Damien was different it didn’t make any difference to their relationship and could communicate very well, he relayed funny stories of instances while growing up which the parents enjoyed and help them understand that children are very adaptable and will find ways of communicating and coping with this situation. Feedback from this session was very positive; “I found Damien inspiring – will help us to encourage our son in the future”. Proof positive that life can go on as normal in a family with a Deaf child, when the right skills are used.

This session was then followed by an interactive presentation by Damien Owens and Siobhán Egan on ‘Deaf and Hearing Awareness Training’. It started with an explanation of DeafHear.ie as an organisation and how is supports the clients. This was followed by parents gaining practical experiences of communicating with someone who is Deaf or Hard of Hearing with the use of earplugs and a mime and gesture activities. Also included was information on ‘Guidelines for Good Communication’ and ‘Lip-reading. It ended with an opportunity for parents to hear what it is like to have a hearing loss and having to guess what words where being said on the cd. The session was well received, “Really broadened my perception on hearing loss/deafness”. “A real eye-opener to see what it is actually like for a deaf person”. “Made me more aware of how my child is hearing and what I can do to help”.

The weekend was coming to a close and there was just enough time to discuss people’s experiences of the weekend, finishing with lunch before families took the long journey home.

The overall response to the weekend was extremely positive, with the right amount and variety of information available. Families returned home with a more positive outlook and the feeling of not being alone. “Very good and extremely well organised. I am leaving with a more positive outlook and a list of things to do!”. “It was very emotional and I learned more than I thought I would and met some very nice people”. “Very positive outlook from everybody about what the future holds, which I found very very uplifting and supportive”. “I was apprehensive about the weekend, but I had a great time and it was very informative. I really enjoyed meeting all the other families”.

The organisers Róisín and Siobhán would like to thank all the DeafHear.ie staff, volunteers, childcare providers, speakers and sign language interpreters Margaret Woufle and Mary Dermody who gave their time and support to the weekend. Also, a special mention must go to The Heritage Hotel and their staffs, the venue was excellent, the families were able to use the swimming pool and facilities, the staff were very helpful and accommodating to the needs of the organisers and the families.

Resources for this event	Format	Size	Download
Booking Form Residential 2009		70 kb
Invitation Families 2009		65 kb
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