A personal message to the league of Super Mums – mothers of visually impaired children – from a Super Mum herself, our very own Jane Ring, Parent Support Officer at LOOK.
To the Super Mums,
This Mother’s Day I will not be with my daughter. Chloe will be enjoying herself at her specialist school for vision impaired (VI) young people, New College Worcester, 131 miles away. She will be hanging out with her peers and hopefully making a bit of mischief. I am sure we will speak and I will try not to cry and upset her. We will avoid talking about the distance between us, but I will probably do the same ‘Mum’ joke about finding a tardis so I can fly in and read her a story or have a much missed hug.
To those other mums who have nurtured your children, been their teacher, cheerleader, and confidante over the years, fought for the provision they need and then been strong enough to let them go, I salute you.
Our children rely on us so heavily to help them experience the world. With limited or no vision, every aspect of life has to be taught differently, close up, through objects, description and touch. Sight makes up 80% of how humans learn, and incidental learning for VI children is very restricted. So we have to immerse ourselves in our child’s world and walk alongside them. We hold their hands tightly, help them discover the world until they move on to using long canes, learn to walk independently and find their way around obstacles.
We are fiercely protective of our children and one of the first things we discover after diagnosis is that it is a sighted world full of discrimination. This results in barriers to education, communities, employment and independence. It doesn’t mean the barriers cannot be taken down but often it is us mothers, with our suits of armour, shields and swords, who take on the villains of inequality, ignorance and paperwork (Disability Living Allowance,Personal Independence Payments, Education Health and Care Plans and Disability Student Allowance to name a few).
We have our allies in the form of professionals: Qualified Teachers for the Visually Impaired, Habilitation Officers, Social Workers, Occupational Therapists, Teaching Assistants, Educational Psychologists, Paediatricians, Eye Clinic Liaison Officers, ophthalmologists. There are potentially many people who come and go in your child’s life. Funding cuts, capacity issues, and the retirement of professionals with key specialist knowledge result in patchy service provision across the country and Super Mums who are trying to hold everything together feeling isolated, deflated and full of frustration that they cannot change the world for their children.
Mothering Sunday is a day to remember mums, step-mums, mums of adopted children, guardians and foster mums. I just want to say to you wonderful women who parent vision impaired children, please take time to consider just how powerful you are. You are central to your child’s progress and are paving the way for those following behind.
I also want to tell you that you are not alone. At LOOK we have been gathering an amazing community of parents and carers (mostly mums) who offer practical support and advice to each other. Kindness, compassion, humour, and incredible strength is shared when we gather online. The superpowers displayed can be impressive. Tenacity, determination, as well as legal prowess to challenge Local Authorities and win tribunals. Knowing what is possible and what other superheroes have achieved really does help. So many of the mums who come along want to be able to use their experiences to help other families.
Some of the mums have quiet power, such as working through paperwork and being willing to move house to ensure their children are close to the school that meets their needs. We each have children at different ages and stages and a mutual desire to help improve their lives as much as possible. The practical advice shared, from how to get a lightweight long cane, how squeaky shoes can encourage a reluctant blind toddler to walk, how to forge positive relationships with professionals and request change of provision, can be life changing.
The biggest superpower we possess is learning to let our children grow, become independent and move away from us. I understand how painful it is, my heart and soul aches when I am away from my Chloe, but I know it is the biggest gift I have given her as well. Our children are amazing, I know that they will be alright because they have you as their mothers. You do not give up, you understand the adversity they face and ultimately you will give them the ability to live an independent and fulfilled life without you. That is the way of the world.
I still need my mum (and I am thankful I have her around as a support to me) and I know Chloe will still need me when she is my age. I appreciate the wonderful parent carer community we have at LOOK which allows me to be sad, celebrate my daughter and also acknowledge my own strength and qualities as a Super Mum. Together we are mighty. I hope we will continue to grow and share our powers so we can change the world for our children.
Stay strong and come and join Jo (another Super Mum), myself, and our very own Justice League online whenever you are able to.
Jane ‘Wonder Woman’ Ring
An invitation to all Super Mums: please do join our next free, online Parent Support Group on 28th March. Jane and Jo will be hosting a chat session where you can share with other parents and carers. More details here:
More about Jane
Jane had wanted to be a Mum for a long time. Chloe’s arrival into the world, 14 years ago, was after a quick and painful labour, but Jane managed without pain relief. The real gut-wrenching agony came later.
Two weeks of tired, blissful days followed, then a hospital appointment that changed Jane’s life. Jane was told that Chloe was profoundly deaf, unable to hear anything apart from maybe the sound of a very noisy lorry or a Samba band.
Then, another shock, as Jane realised that Chloe’s eyes were not following her, or anything. An appointment at the eye clinic was Jane’s real moment of panic, when she faced the horror and sadness that Chloe couldn’t see. At three months old Chloe was registered blind. That day Jane sobbed into her own mother’s arms before phoning the charity Sense to ask for help.
Jane says, “Nobody has any answers. None of the geneticists have seen a child like Chloe before. She doesn’t have a syndrome or a known condition. Today it still breaks my heart, but I have learnt to deal with it. Chloe is so totally amazing that I have stopped thinking about what she can’t do and I hold onto all the positives.”
LOOK has been a huge source of support to Jane and Chloe. Chloe is a mentee and her mentor, Andrea (who became a mother herself in January) has played a large part in Chloe using her voice to express herself.
In September, Chloe started as a student at New College Worcester, far away from the family home in Exeter. The decision was Chloe’s, supported by her parents, after difficult years trying to survive at a mainstream school. “We are incredibly proud of her. She is a wonderful girl with a unique attitude and sense of humour that comes from how she experiences life.”
Chloe and Jane have a very strong bond, but as is often the way with teenage daughters and their mums, Jane often irritates Chloe, and Jane has become “Mother” when she is being particularly annoying and asking Chloe to do things.
This Mother’s Day Jane will not be with Chloe in person, but Jane will be celebrating all the same: “Chloe is much happier in herself in Worcester. She is accepting of her disabilities, and clearer about her needs than I was at 14! Being in specialist provision at New College Worcester has given her a chance to shine, be totally herself, and learn the skills she needs to be an independent adult. I am so proud of my daughter.”
Jane, who had previously worked in theatre in community, prisons, and education settings, now works for LOOK as Parent Support Officer, helping other families living with visual impairment. Jane is an open, determined, and compassionate person and we are happy to have her on the LOOK team.