Practical support

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Getting organised

Some of the following can be helpful to help organise paperwork and appointments:

  • 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. You can stick the business cards of any professionals you meet inside to keep their contact details handy
  • A shared calendar – you will have many appointments over the next few months. Sharing the dates within the family can help you organise and share the workload and childcare etc.
  • A notebook – It is easy to forget things that are said to us when we are stressed. Writing down any key points or questions can help you remember what you want to share with family, or ask next time you see a professional. Keep written records of appointments and phone calls etc. These records can be brief but useful to have when you need them in future.

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 often 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 the 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: Paediatrician, Audiologist, Ear Nose & Throat Specialist, Physiotherapist, Occupational Therapist, Speech Therapist, Ophthalmologist, Neurologist, Geneticist, Genetic Counsellor, and Psychologist.
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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. Remember you can connect with other parents via Usher Kids UK.

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. 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, their hearing loss and individual needs will enable you to make the right decision for your child. Whatever you decide, it is recommended that your baby has started early intervention for their hearing loss by the time they are 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.
  • 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 that 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.
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Professionals who can give practical support

Eye Clinic Liaison Officers (usually based in Eye Hospitals) work directly with those diagnosed with vision loss and their family member. They can provide advice about relevant local and national services and benefits which address the needs of your family. To find your nearest Eye Clinic Liaison Officer (ECLO), along with other services which may be of use, you can search the RNIB Sightline Directory

The Sensory Support Service based in your local authority should be able to provide practical support and advice. If you are not already in contact with them prior to the Usher syndrome diagnosis, then a referral should have been sent by the Ophthalmologist in your Eye Hospital. If you are not sure, you can contact the Eye hospital team to find out, or reach out directly to the Sensory Support team in your local authority to find out how to be referred to them.

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