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Building blocks: advice from other parents

Dear Parents

If your baby or child has been diagnosed with a hearing loss, we know how you are feeling now. We have all experienced those feelings of isolation and sadness when our children were diagnosed. The diagnosis can come as a shock.

In the weeks, months and years ahead, however, you will discover that your baby or child will do all those things that you dreamt about before they were born. He will smile at you, talk to you, go to school, play sport and find a job. She will marry and have children of her own. Life won't always be easy, but with your love and assistance, your baby will grow up to lead a happy, fulfilled and independent life.

The information in this parent-to-parent section was put together for you using the knowledge and experiences of parents in our online support groups. We want you to know that you are not alone. We have all learnt so much from other parents. We have called it 'Building Blocks' as you are beginning to build a happy and successful future for your baby.


Briefly...

  • The main goal of early identification of hearing is access to communication. Cuddling, comforting, rocking, smiling and singing are all forms of communication.
  • You have your baby’s best interests at heart. Parents are natural advocates for their children and you should play an active role in planning your baby’s future.
  • Take one step at a time – great journeys start with a single step.
  • Get as much information as you can from many different sources. Parents who receive unbiased information and support will make the right decisions for their baby and family.
  • Take the time you need to make decisions – you don’t need to rush. However, it is not a good idea to take months.
  • Ask questions and make sure you understand the answers. Ask your baby’s doctors and audiologists to write down the main points they have discussed with you.
  • Speak up about your concerns and worries.
  • Store all the information you have about your baby’s hearing loss in one place.
  • Allow people to help and support you and your family – ask for help when you need it.
  • Be gentle on yourselves – take time out.

Good foundations

Finding out your baby has a hearing loss is a shock. Fortunately, what your baby needs most from you at the moment are all those things that parents are so good at – touching, talking, comforting and loving. While there is a lot for you to learn and decisions need to be made, enjoy your baby and settle into a comfortable routine.
Baby
You have probably already started to learn a little about what having a baby with a hearing loss means from your doctor or audiologist. All the information can be overwhelming. But parents have learnt that the more information we have about hearing loss and its management, the more in control we are and the easier it is to get on with the things that need to be done.

Knowledge is power. Gather as much information you can from many different sources. Read brochures, books, articles and web sites. You will find some resources very helpful and others that you may not like. Our babies are all individuals and our families have different needs. What suits one family may not be right for yours.


Looking after yourself

Parents respond in different ways to finding out our baby has a hearing loss. Denial, anger, sadness and fear are all common reactions. Most of us cry. How we respond to the diagnosis depends on many things that are unique to us and our family. Over time these strong feelings fade. We learn to accept the situation and get on with our lives – we develop some perspective about the role of deafness in our lives. There will still be times of sadness or grief - it is part of being a loving parent.

Having a baby with a hearing loss affects the whole family. Parents may approach their new roles differently. They may feel and react differently. Talk to your partner about how you are feeling and be aware of their needs as well. It can also be beneficial to share your feelings with family and friends you trust and love. Being honest and open with family and friends will help them understand that it is OK to talk about your baby and his hearing loss and help you to better deal with the situation. If you have other children, be aware of their feelings and needs.

You are the centre of your baby’s universe and it is important that you look after yourself over these next few months. Try and get enough sleep; eat healthy meals and do some regular exercise. A walk each day is good for you and your baby!

In the first few weeks after your baby’s diagnosis, it can be difficult to concentrate and ‘get your act together.’ Accept help from family and friends. We have put together some information you can give your family and friends which has some helpful tips and suggestions for them. A good meal, babysitting or taking your other children to school are all things that will help you and allow them to show you that they care.


Getting organised

  • Two ring binders – one for your baby’s test results and reports and the other for information about hearing loss, services etc.
  • A business card holder – ask each person you see for a business card and you will have all their contact details handy.
  • A calendar – you will have many appointments over the next few months. Remember to book in time for coffee with friends or a meal with family (let them cook)!
  • A journal – write things down. We often forget things that are said to us when we are stressed and it can be a good idea to jot things down. Keep written records of appointments and phone calls etc. They can be brief but useful. Many parents also find writing down their thoughts and feelings can be helpful.

Your team

You and your baby will be meeting a number of different people over the next weeks and months. They are all part of a multi-disciplinary team and are there to guide and support you.

  • You and your family are the most important people on your baby’s team and it is important that you build up a good rapport with your team members. You will then feel comfortable expressing your concerns and communicating your needs to them.
  • Take a list of questions with you to appointments. We often forget the most important questions when we visit the doctor or audiologist.
  • No question is too silly – someone has always asked the same question before you.
  • Make sure you understand the answers to your questions – don’t go home wondering. Ask for a professional interpreter if you are not fluent in English.
  • Make sure you get copies of reports and test results for your records. These can be very useful over time. Keep them in that folder you have started!
  • It is OK to question a professional’s recommendations or ask for a second opinion. You must feel comfortable with the management of your baby’s hearing loss.

Information is important

Good quality information about hearing loss and its management is so important. Get as much information as you can from many different sources and discuss what you have learnt with the professionals in your team, your family and friends and other parents of children with a hearing loss. You will Then be able to make informed choices about your baby’s future.

Some parents find all the initial information overwhelming and difficult to absorb while others can’t get enough information. Go at a pace that suits you. But remember that it will be important that you keep up with current information for many years to come. Technology, government policies and so on change over time and you need to keep up to date and informed as your baby gets older.

There are many excellent sources of good, accurate and reliable information – books, brochures and online resources. ‘Choices’ from Australian Hearing is the best starting point or ask your paediatrician at the diagnosing hospital or audiologist for recommendations. We hope this website will be a continuing source of reliable information as your baby grows.

Most parents find other parents of deaf or hearing impaired children to be a wonderful source of knowledge and experience.


Making decisions

There appears to be so many decisions to be made when our baby is diagnosed with a hearing loss. And we need to make them when we are still in shock and know so little …

  • Don’t rush into things. Taking a few weeks to find out more about your baby, his hearing loss and needs will not affect his future. However, it is not a good idea to take months. It is recommended that your baby is aided and has started early intervention by the time he is 6 months old.
  • You are entitled to choose the path that best suits your baby and family. Make sure that you know all the options available to you before making decisions. Be an informed decision-maker.
  • Decisions you make now can be changed – decisions that are right for your family today may no longer be right in a few years. Shop around for an early intervention service that suits your family. Visit them and talk to the staff. They will become an important part of your life for a while, so it is important you feel comfortable and confident with their service.

Rural families

Living outside a metropolitan area presents a number of other challenges for families. You will probably need to travel greater distances to access specialist and audiological services. Issues about work, looking after other children and travelling with a small baby increase the stress for rural families. It can seem like you have just arrived back home and you must be off again.

This will improve over time. There will be fewer appointments and you will be able to attend an Australian Hearing Centre closer to home. There are some services available to you that can relieve the financial burden. Ask your doctor, audiologist or hospital social worker about financial assistance for travel and accommodation in your state. Baby in carseat

Travel safely. Don’t drive if you are upset. It might be better to stay overnight after an appointment and drive home when you and your baby are rested and more relaxed.

Be organised. Keep all the information in one place. Remember any forms that may need to be signed. Have all your questions written down. Don’t allow the doctor, audiologist or other health professional to rush you. You have travelled a long way to attend the appointment and you should return home feeling the visit was worthwhile.

Try and organise appointments that will be easiest for you and your family. Late Friday afternoon or early Monday morning may be less disruptive to family life.

Remember that the people who care about you would like to offer you help and support. Ask them when you need help – there will be other times when you can repay the favour.


You are not alone

Most parents feel isolated when their baby is diagnosed with a hearing loss. But you are not alone. There are many parents who have been on the journey before you and know how important it is for families to make contact with other families in a similar situation.

Where can you find other parents? Speak to your audiologist and tell him/her that you would like to meet other parents in your local area. Your Early Intervention Service will be an excellent source for support and friendship with other families. There are Parent Groups in most States who provide information and support to parents with children of all ages. And last, but not least, there are online groups where many families have found support and good practical information from other families living with kids with a hearing loss in a day-to-day situation.

You will learn so much from other parents. They have a vast wealth of experience and knowledge from which you can benefit. And other parents can learn from YOUR unique perspective and experience. You really are not alone...

09-Nov-2015 6:57 PM (AEST)