Parents Pay It Forward at SSI Info Day
in Events, News, Paediatrics
25 Jul 2014
Learning that your child has an eye disease which causes blindness or low vision can be devastating. Parenting is hard enough, but when you find yourself caring for a child whose visual future may depend on the interventions and support you provide in the critical early years, the pressure is immense and can be quite overwhelming.
What do I need to do to help my child? How do I know what they need? Who do I ask for help? Can we afford to get our child the extra help they need? The future is unknown and responsible is weighty.
It’s important to remember that you are not alone; that other parents have trod similar paths before you and that there are a number of organisations and people who are here to help. You need to reach out and ask for help.
According to Professor John Grigg from the Save Sight Institute “One thing we know is that parents need other parents. Our role as doctors is an important one, and we can help by pointing families towards assistance and resources that they need, but one of the most valuable resources is the insight and experience of another parent who knows what you are going through”.
At the annual parents and carers information day last Saturday, the SSI asked attendees to “pay it forward” and to note down their advice and recommendations to pass on to parents who are newer to the experience. Some of these ideas are listed below, and if you have any additional thoughts we encourage you to send it through to SSI.
- When you first find out what your child is diagnosed with, get as much information and support as you can. For example, get in contact with Vision Australia, RIDBC, Carers NSW etc. I could have accessed them three years ago but only discovered it today. No-one told me about them!
- Don’t be afraid to seek a second opinion.
- They will fall over, bump their heads, knock things over. All children do, and these are lessons they have to learn. No helicopters!
- Treat your child like any other child. They can do everything, and they will tell you if they can’t. Don’t just assume that they can’t.
- They will want to touch everything. It will drive you nuts sometimes. Be sympathetic and patient.
- When out in public places, where bright or distinctive clothing for parents and siblings to help with identification.
- Not having vision is not the end of the world.
- Talk, talk, talk. Discuss your worries and your thoughts about your child’s diagnosis with anyone that you can. The shock, worry and stress will ease over time. Life goes on and happiness returns.
- Don’t feel alone. Create opportunities to meet with other people in similar situations, and the internet is a wonderful resource for connecting with other parents throughout the world.
- Focus on what your child CAN do. Not on what they can’t do.
- Keep a journal of your thoughts, worries and advice that you receive from professionals. One day this diary will be a wonderful reminder of how far you and your child and family have come.
- Above all else, you are your child’s advocate. They cannot do it for themselves, so never ever feel guilty about asking questions.
- Educate yourself about the condition that your child has. It may seem overwhelming, but when you understand you are less fearful.
- Be honest with your child about their condition. Be a positive force in their life.
- Ask your child questions about their impairment and encourage them to communicate their needs to others (yourself included) who will have difficulty understanding how they see (for low vision children).
- Be alert to any behavioural or physical changes, and mention this to your physician.
- Mothers instinct is real. Trust in it.
- Even if your child goes to a mainstream school, connect with organisations to ensure that they have friends with similar challenges too.