If you’re a parent of a newly diagnosed child with Usher syndrome here are a few tips to help you:
- Give yourself time to absorb the diagnosis. You’re likely to be feeling a range of emotions and this is normal. For more information look at Children with additional needs: feelings | Raising Children Network
- Get your child’s diagnosis in writing from the geneticist and it’s helpful if your child’s GP, ENT, and paediatrician have a copy.
- Find out about Usher syndrome so you can make informed decisions for your child. UsherKids Australia have a range of webinars and resources for parents on this website.
- Talk to other parents of children with Usher syndrome. They will be such a valuable resource to you, as you will become to them.
- Tell your child’s existing therapists and teachers about the diagnosis when you feel ready and ask them about their knowledge and experience of Usher syndrome. If they are wanting more information UsherKids Australia can provide it.
- Review your child’s current support needs and if needed look into what other services & therapists are available for your child (occupational therapist, physiotherapist, orthoptist, vision consultants/teachers, orientation & mobility specialist). You may not need to change any supports but it’s good to know what’s available down the track.
- Look at your child’s current NDIS plan. If more supports are needed now, you can lodge a change of circumstance with NDIA.
- Organise a team meeting with all the therapists and teachers working with your child, especially if you are accessing support from different services.
- Find an ophthalmologist with experience in Usher syndrome. One who can see your child long term would be best. For young children it’s unlikely there will be any visual changes yet but it’s good to get baseline measurements and rule out another other eye conditions, unrelated to their Usher diagnosis (e.g. a refractive error).
- If your child doesn’t have a good paediatrician it’s a good time to find one so they can coordinate your child’s health services.
- Lastly but most importantly keep enjoying the time with your child.
Keeping dreaming big things for them.
UsherKids Australia has a dedicated Case Coordinator to assist families through the early diagnosis period. For more information email us at firstname.lastname@example.org