Jennifer Bowen created our charity in the 1980’s. Her daughter Charlotte began losing her sight at the age of 7, and was diagnosed with Cone Rod Dystrophy. Completely at a loss, and with very little support from her local authority, Jennifer felt scared and alone. She was desperate for more connection with other families in a similar position.
At that time, there was nothing out there to facilitate that. So she went about establishing LOOK: a parent-led support network for parents and carers of visually impaired children. Since then, the charity has grown and taken new directions but the ethos has remained the same: a community with connection and peer support at its heart.
Jennifer may not be at the helm any longer, but she is still a vital and active part of LOOK. She dedicates a huge amount of time to talking to parents on the phone, providing a listening and understanding ear for parents in need. We are so grateful for her drive and passion and we love having her wisdom, good humour and encouragement to help guide us.
Thank you, Jennifer, for everything you have done and have carried on doing, for LOOK, and for writing this lovely blog.
Spring is coming, daffodils are sprouting and my lovely snowdrops are fading. I love this time of year and the hope it brings. It is time to celebrate Mother’s Day and even though this year many of us older mums are unable to spend time with our families in person, we will all have some happy memories of Mothers Days gone by and will hopefully enjoy getting together on Zoom or on the phone where we can.
I remember that as a child, Mother’s Day was a low-key affair. My Mother said it originated because servant girls were allowed to visit their parents only once a year, on the fourth Sunday in Lent, taking a cake they had baked in the big house kitchen and maybe flowers from the hedgerows. We weren’t servant girls and my parents didn’t have a big house so it wasn’t until children brought home cards from school to give to their Mums that I even became conscious of the occasion. But by the time I had my own children it was more embedded in our wider culture and the kids loved it. I have to admit that I too grew to enjoy the special attention – the cards in the shape of a teapot with a tea bag stapled to the inside… an extra hug and a kiss. Life can be such a blur and a whirl. It is lovely to stop for a moment and appreciate the connections we have and appreciate each other for the support we give and receive.
This year it is maybe more important than ever to take the time to reflect on all the incredible things Mums do. What a year of challenges! What a strain! But also what an incredible achievement, to have survived – to still be surviving – this extraordinarily difficult time. The resilience this has taken is amazing. And it is this fierce and determined love that has carried so many families through.
Mother’s day coincides with my son’s Birthday this year – March 14th. We had agreed months ago that he and his family would come to see me and we would all have a great time with two Mums and a birthday to celebrate. They have been shielding their lovely daughter since the beginning of the first lockdown last year and have been in complete isolation. Now it is obvious that we will have to hang on a bit longer and be patient once again, as they won’t be able to travel for the visit as planned.
Emily, their daughter who is deafblind and autistic is the focus of their attention. Emily has a condition called Charge Syndrome. She is profoundly deaf, vision impaired and has holes in the heart. She has a very small channel of central vision in one eye and very little hearing. She has an amazing memory but very limited speech, poor balance and needs constant attention. She has growth and development issues and will never live independently.
Her parents have had to fight tooth and nail to get the support she needs. Like all of you – whether your child’s needs are complex or singular – you are always on a journey, learning the best way to get the most out of life for all the family.
Her Mum has become a BSL professional level signer but I (to my everlasting shame) have not mastered this complex language. We do communicate in other ways though.
And with extraordinary commitment and steadfast love, Emily and her parents have figured out all sorts of ways to make her life happy and fulfilled and full of creativity and expression.
Emily does incredible drawings and loves singing along with her favourite pop stars booming away. She understands most things. For the 14th March, she will make her Dad a birthday cake, closely overseen by Mum – and of course – a Mother’s Day cake too.
Because of Emily’s autism, the strategy they have found for helping her feel happy and calm is through using a very detailed calendar and planning everything a month in advance. For this to work, they have to stick to it rigidly. If the plan is thrown, Emily is thrown, and she can feel very anxious. The calendar is their bible. The discipline involved in this is incredibly impressive. Lockdown has meant that this strict system was forced to change very suddenly. All of the usual activities were cancelled and support was withdrawn. So they had to adapt, fast, and keep things as steady as possible. Although the content has had to change, they have kept up with the structure of their timetable. Instead of going to the farm or the coffee shop with her carers as before, her Mum has constructed daily activities. So in sun, hail, wind and even snow, one or other of her parents will be seen every day at the right time, pushing her on the swing or bouncing with her on the trampoline. Each day is divided into sections. Emily has very limited speech but a clear understanding of what must happen and when.
Emily’s Mum has dedicated her life to making sure that Emily’s needs are met. She, like so many of you with children who have complex needs, will have found this year extremely tough going. I know it has been a living nightmare (hell) for many of you.
With very restricted help from the usual charities and social services and an inability to travel or see the usual people, it has often felt relentless, with moments of panic and despair.
Many carers have been caring around the clock to support the person they care for through lockdown and have had to give up paid work altogether. Yet the main benefit for carers, Carer’s Allowance – the lowest benefit of its kind at just £67.25 – is set to rise by just 35p a week in April.
This has been a real struggle as Covid has brought higher costs for many – from increased food bills as cheaper alternatives are less available, to having to cover delivery fees and purchasing Personal Protective Equipment. Many people have also paid out privately to replace therapies that have been withdrawn.
By plugging the gap left by the cancelled public services, you carers have also been essential in supporting our health and care systems throughout the pandemic, often at huge personal cost to your health, wellbeing, and finances. And day in, day out, you have cared for your children, you have done your best for them, you have carried on giving your love.
And for all that, you all deserve a whopping great Mother’s Day medal.
I am so proud of Emily and her parents for getting through all this and of how much they have achieved. The support and the love they give and keep giving is awe inspiring. I am so privileged to be Emily’s grandmother and to share in all the joy she brings. She is a ray of spring sunshine in all of our lives, as we slowly emerge from this longest of winters.
Caring for children with disabilities and complex needs is the toughest and most important job going. I take my hat off – to them and to all of you – for getting through. We are nearly there, and I so look forward to spending time in the sunshine with my own wonderful family – and with the wider LOOK family too – as soon as we are able.
Happy Mothers Day to all of you.
Carers UK are running a campaign to have the work that carers do recognised and calling on the government to act to address the financial hardship that many carers face. Please follow the link below for more information about this campaign and how you can get involved.
