The introduction of the National Newborn Hearing Screening programme has resulted in more babies being diagnosed with hearing loss at a much earlier age. This has led to many changes in the services for families with deaf children. Whilst proving to be a challenge, it also gives us the chance to review and to reflect on the changing needs of families with young deaf children and identify services they might benefit from.
The development of the ‘Communicating with your baby’ package is one example of the work of the Sensory Impaired Children's Service, based at Elmfield House in Bristol. Given the fact that we are now working with families of much younger deaf babies, we need to make sure that our materials are more age-appropriate.
The early diagnosis of deaf children is certainly innovative but it also means that families with young deaf children are being confronted with several issues, connected to their child's deafness, at a much earlier stage. These may include:
These factors mean that an earlier identification may place parents in a position of immense pressure requiring them to absorb the various and sometimes conflicting information, some of which may have been unknown to them previously. Parents need to consider the different options that are available. This would always have been necessary at some stage in their child's life, however it now happens at a time when they should be welcoming and enjoying the newest addition to the family. So for these families instead of welcoming ‘Beth’ or ‘Drew’ into the family, they must consider the implications that having a deaf child can also bring.
As we have said, all of these decisions do have to be made at some stage, but it is equally important to remind parents that they must enjoy the bonding process with their new baby and this should be their main priority, as well making sure that their child is being cared for and loved by them.
Communication within the family is essential if natural bonding is to take place effectively from an early stage. Communication allows families to enjoy their time with their new baby. However, this is not easy. For many parents, the reality is that they are usually confronted with the medical aspect of deafness right from the early days and the impact of this remains with them for the rest of their lives. Many parents do not have much opportunity to learn about the positive, social model of deafness which would it can be argued, enable them to accept their child's deafness better in the long run.
So for many parents, regardless of whether they are a new parent or an experienced parent, the actual diagnosis can seriously affect their level of self confidence, they may see themselves as a parent of a deaf child, rather than a parent whose child happens to be deaf.
The questions that they are likely to be asking themselves are:
"How will I communicate with my child?"
"Will she or he be able to understand me?"
"Should I learn to use sign language?"
"Should I consider my child having a cochlear implant?"
"How can I teach my child to listen and talk?"
This list is endless, and will add to the normal stresses and strains of having a new baby: sleeping patterns, feeding dilemmas and so on.
Through using these materials with parents, we hope we can help them become reconciled to the fact that whatever kinds of intervention the child or the family have had, they still need to accept that their child will always be deaf. Nevertheless, decisions that must be made on behalf of their child can be put on hold for a bit longer until they have had the opportunity to bond and establish their relationship. In this way, they will begin to know their child better, which will in turn, help them to make decisions concerning their child's future. It is almost impossible to predict what our children will do in the future and every child is different. We need to be flexible in a way that allows individual children's and family's needs to be met. This can be difficult to cater for due to the wide spectrum of needs.
It is hoped that the basic communication strategies contained in the pack will encourage more parents to feel better equipped and enable their children to feel more able to cope with the world outside. The tips include the importance of good eye contact and building up a child's eye concentration span. This will greatly enhance their learning potential in an educational environment. Now that the screening process is much earlier, in a way, this is ideal because good communication interaction between the child and their family can be established at a much earlier stage, regardless of which communication method the parents may have opted for, or even if they have not yet decided. If, for some reason, a good communication pattern is not yet established, we can, with the parent's support, start to consider the different options that may be necessary to get this communication working at a much earlier stage. For example, delayed communication could be an indication that a child has a learning complication that would require more intensive support from the appropriate services. This information could be acted upon at a later stage.
The whole aim of using this material is to empower parents, making sure that they are able to bond with their child as much as possible. With that in mind, we would advise them not to make any important decisions until they are able to see what their child can do and any other areas where they may need support. For many of us it is almost impossible to predict what our children will do as every child is different and we have no way knowing of how they will adapt to different situations.
The important thing is that every parent should be given the opportunity to bond as much as they can with their child in the early stages. (See Yoshinago- Itano C, Journal of Deaf Studies 2003)
The materials that we have been using stem from research carried out in 1990 at Bristol Centre for Deaf studies, University of Bristol. The study monitored communication development of deaf parents with their deaf and hearing children and compared it with the hearing parents of hearing children. This proved that the language development, regardless of whether the families have opted to use sign language or speech with their child, suffered no detrimental effects even though different approaches were being used.
By using our trained deaf adults, we have introduced some of these basic techniques to hearing parents of deaf children in order that they may feel more confident and have good quality interaction with their children. Again, with the early diagnosis of deafness, Deaf adults are able to meet with families much earlier in the child's life, which can only be advantageous in terms of communication and bonding.
The information pack includes some tips on making eye contact, touching, waving, pointing and getting children's attention. These come in six parts including an introduction and explanation of how to use the tips. Information packs are available from the Sensory Impaired Children's service, Elmfield House, Greystoke Avenue, Westbury on Trym, Bristol BS10 6AY at a price of £5.00 per pack. The information packs should prove useful to all parents and teachers involved in the care of deaf children. However, we would advise that the people most qualified to help and give guidance are deaf parents, who will probably be using the strategies in their own homes without even thinking about it.
Whilst this information is aimed at hearing parents, the needs of deaf parents with deaf children must not be overlooked. It is crucial that deaf parents realise their natural response to developing communication with their child is ideal. This knowledge should enhance self-confidence and prevent deaf parents from feeling that they should be doing more to communicate with their children - unnecessary extra pressure.
First published in the BATOD Association Magazine March 2004, page 2