I was recently asked by a QTVI, “What would be the best piece of advice you would offer a parent who has a young recently diagnosed child who has a visual impairment?”
I have been asked this question many times and my answer tends to be don’t wrap your child up in cotton wool. I know it sounds silly but as parents it is our job to teach our child to be independent, learn from their own mistakes, explore and be encouraged to learn through experience. Sometimes it can be difficult as our natural parental instinct is too help and to never see your child struggle. But I am firm in my belief that it is important to take a step back and allow your child to develop these necessary life skills. Problem solving, acting independently, self-belief and determination. I think these skills will create the best base to raising a confident and happy child with fantastic levels of self-esteem.
Through this community I have come across many Mums who in their own unique way have something to contribute to the best piece of advice discussion, so they have all got on board to offer that advice, right here, in this post! So thank you to all the Mummies who took time to assist me with this article.
Laura Hughes from Moorvision and mummy to Tiri and Tom: I would say – firstly, find other parents in the same situation – sight loss is rare in childhood and you will benefit hugely from having other parents to talk to and your child will benefit from having other VI children to relate to. Secondly, use online forums to gather as much information as you can about your child’s condition, the support that is available, the benefits that may help you and other general information. Thirdly – fight for what YOU feel is the most appropriate education for your child – do not be swayed off this path as this will be the most crucial thing that you do above all else. Finally – remember that your child is not the first or the only blind child – blind children have been in our society forever. Modern times mean that being blind today means that it is not the disability that it used to be. There is so much support, so much technology, so much better understanding – there is no reason why your child won’t lead a wonderful and fulfilling life.
Karen Newell from #toylikeme and Playful Explorations for children who have a Visual Impairment and mummy to Fred and Avah: After diagnosis you may feel that you know nothing. But its all there inside you. Listen to yourself and your child, and reach out. You are not alone.
Helen Seth- Chair of the North Yorkshire Parent Carer forum and mummy to Charlotte and Joe: You can do it – you really will be ok! we are all too ready to doubt ourselves, ground down by the whole process of getting to diagnosis, getting to a starting point- but actually most people do have it in them they just need encouraging to believe in themselves.
Trudie Graham mummy to Theo and Ruben, founder of rubensworld.co.uk: For me I guess it was knowledge is power & strength to get through challenges to get out there and research as you and I have done.
Jane Ring, author of Navigating Chloe’s world, campaigner of the charity Sense and mummy to Chloe: Please take one day at a time, be kind to yourself and your partner and try and bring someone supportive with you to hospital appointments. It is too hard for your brain to take in all that you are being told and it is so helpful to have a person slightly removed who can listen properly to the information that is so hard to hear. My Dad came with Neil and I and I will always be so grateful to him. The other thing I would like to say is that you might not feel it now but you are far stronger than you think.
Kristy Hooper, from Project Brailler and mummy to Lily-Grace: Find another parent! Get advice from those doing the job firsthand. They are the experts.
Malak Allouch, throughscarlettseyes.com author and mummy to Mera: I will say to those parent try not to feel guilty about what’s happened to your child because the guilt won’t help you or help your child .try to reach for parent who is been through this before because there advice worth everything try not to close the doors and be sad try to reach because that’s the only way you can help your child. Try to be contact and ask for advice there is always someone is willing and happy to help they know and they understand your fears your worries and they can give you the best advice.
I want to say to all the Mums who have helped out with the post thank you very much! When I am contacted by parents of newly diagnosed children I will send them the link to this article so that they can get some great first-hand experience from dedicated mothers of very special children. All of the mums involved in this post are very proactive in the VI community and I have provided links to all the many wonderful campaigns, support groups and websites these parents provide to benefit ALL children who have a visual impairment.