Support After Diagnosis
In this section we have some helpful tips below to help you start your journey after diagnosis, written by parents, for parents.
We also have support resources dealing with different aspects of Usher syndrome:
We also have support resources dealing with different aspects of Usher syndrome:
- Support: How to tell your child
- Support: Education
- Support: Vestibular Rehabilitation
- Support: Play
- Support: Technology
- Further support topic resources in the pipeline*: Education, Mobility, Communication, Vestibular Habilitation, Careers (*notification will be sent out to mailing list as soon as new updates are added)
TIPS for parents, by parents
There are lots of things to think about when a child is diagnosed with Usher syndrome. It is helpful to be able to learn from parents that have gone before. Here are some of their tips:
Getting organised
Your team
You and your child 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. They won’t be in one location , nor connected medically- it will fall on you to be the Case Manager and keep everyone up to date on your child’s progress
Information is important
Good quality information about hearing loss and its management is so important. The hearing appointments are likely to be frequent in the first few years of life. There won’t be as many appointments related to your child’s eye sight, so it is worth being ready to ask all your questions when you do see the eye specialists.
Get as much information as you can from many different sources and discuss what you have learnt with the professionals in your team. Other parents of children with hearing loss, vision loss or Usher syndrome can be a wonderful source of knowledge and experience. You will then be able to make informed choices about your child’s future.
Some parents find the volume of 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 child gets older.
There are many excellent sources of good, accurate and reliable information – books, brochures and online resources. Ask your paediatrician, geneticist, ophthalmologist or audiologist at the diagnosing hospital for recommendations. We hope this website will be a continuing source of reliable information as your child grows.
Making decisions
There appear to be so many decisions to be made when a child is diagnosed with a hearing loss and then Usher syndrome. There may be a lot of time in between both these diagnosis or just a few months. Either way, they may both come as a shock to you and your family.
Getting organised
- A ring binder – for your child's test results and reports. It is helpful to have a section for eye tests/correspondence, another for hearing test results 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.
- 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 for example in a blog, can be helpful.
Your team
You and your child 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. They won’t be in one location , nor connected medically- it will fall on you to be the Case Manager and keep everyone up to date on your child’s progress
- You and your family are the most important people on your child'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 date order 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 child's condition.
- Your team may consist of a number of the following specialists: General Practitioner, Paediatrician, Audiologist, Ear Nose & Throat Specialist, Physiotherapist, Occupational Therapist, Speech Therapist, Ophthalmologist, Neurologist, Geneticist, Genetic Counsellor, and Psychologist. See our section Professionals involved with your child to find out more about their roles.
Information is important
Good quality information about hearing loss and its management is so important. The hearing appointments are likely to be frequent in the first few years of life. There won’t be as many appointments related to your child’s eye sight, so it is worth being ready to ask all your questions when you do see the eye specialists.
Get as much information as you can from many different sources and discuss what you have learnt with the professionals in your team. Other parents of children with hearing loss, vision loss or Usher syndrome can be a wonderful source of knowledge and experience. You will then be able to make informed choices about your child’s future.
Some parents find the volume of 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 child gets older.
There are many excellent sources of good, accurate and reliable information – books, brochures and online resources. Ask your paediatrician, geneticist, ophthalmologist or audiologist at the diagnosing hospital for recommendations. We hope this website will be a continuing source of reliable information as your child grows.
Making decisions
There appear to be so many decisions to be made when a child is diagnosed with a hearing loss and then Usher syndrome. There may be a lot of time in between both these diagnosis or just a few months. Either way, they may both come as a shock to you and your family.
- Don’t rush into things. Taking a few weeks/months to find out more about your baby, his/her hearing loss and individual needs will not affect his future. However, it is not a good idea to take months. It is recommended that your baby has started early intervention for their hearing loss by the time he/she is 6 months old.
- You are entitled to choose the path that best suits your child 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. Discuss your options with the early intervention service at your local hospital/local authority. Visit them and talk to the staff. They will become an important part of your life for some time, so it is important you feel comfortable and confident with their service. You may find later on another service provides an approach that suits you better at that time. You are able to change services, just not be part of more than one at a time.