We interviewed Caroline Ringwood, GSCP Manager for her insight as a mother of a child with a learning disability in honour of last week being National Learning Disability week. The focus of this year’s Learning Disability Week was busting myths about living life with a learning disability. Learning Disability Week | Mencap.
Please introduce yourself and your child
Hi, I’m Caroline the Greenwich Safeguarding Children Partnership Manager but, outside of that I am Max’s mum. Max who is turning 10 this year, has complex chromosomal disorder overlapping with Cri Du Chat Syndrome otherwise known as 5p minus. I know I am biased but, Max is the most quick witted, fun loving and caring child and I’m incredibly lucky and proud to be his mum!
From the moment Max was born, I was thrown into a world I’d never imagined. There is a poem called ‘Welcome to Holland’ by Emily Kinsley which sums up perfectly what it is to become a parent to a disabled child. If you haven’t read it, please do! ‘You must learn a whole new language…’ it reads, and you absolutely must because everything you thought you knew about parenting changes with that diagnosis but, as the months and years go on you adjust to a new life, new dreams, and new challenges. Max has opened up this new world for me and, taught me so much about resilience and perseverance.
What has your child achieved that you are proud of?
I’m proud of everything, I’d be here for hours if I were to list all of Max’s wonderful achievements! We’ve never taken anything Max has achieved for granted and we celebrate every single thing from lifting his head to bum shuffling as a baby to eating and chewing food (a lot of children with Max’s syndrome are peg or tube fed but not Max, has a huge appetite)! Even progress on pronouncing a word is cause for celebration in our house.
The pure determination Max has to do what comes naturally to typical children is astounding. If I had to pick one thing about Max that makes me smile every day, it would be his sense of humour. As I said, he is so quick witted and funny, he loves to laugh and make others laugh and he is just such a joy to be around.
What are some of the myths/misconceptions that you have encountered?
So many! [From] being asked whether I could have altered my diet whilst pregnant to avoid Max’s disability to people assuming non-verbal means incapable. Max has delayed speech but his receptive communication (what is understands) is very good. Max will pick up on someone’s tone, their body language and other non-verbal cues and provide an appropriate response which is incredible for him.
I think one of the hardest things and something we have and still do face on a regular basis is, people seeing a learning disability as something that can be treated or, they tell us that it’ll get better and Max is just delayed. A learning disability doesn’t magically disappear and Max will face challenges throughout his life but, with the right support he can and will continue to achieve great things, reaching his full potential. I say this is one of the hardest things because we need those around us to understand the challenges we face, it can be very isolating without that understanding and acceptance.
How do you deal with myths/misconceptions?
Educate! I never apologise for correcting someone or explaining how and why they may be wrong. I dream of a world that understands, accepts and nurtures children and, adults with learning disabilities. I wasn’t always able to speak up though, it has become easier as the years have gone on but, in the first few years of Max’s life I found situations and what others said very difficult to deal with but now, I see the truth is that those people probably don’t know what to say. Quite often they think they’re saying the right thing and it’s just ignorance or the fear of the unknown.
I think raising awareness is so important especially if that world I and, millions of parents around the world dream of, is ever to become a reality.
Do you feel stigma when you tell someone that your child has a learning disability?
Yes, attending events where people are unaware of Max’s disability can be daunting. I remember going to baby groups and being the only parent of a disabled child, the looks and confusion on the faces of others was so difficult and, I suppose that was because not only did people not understand but because in those early days it was difficult for me to be around typical babies too. It was an adjustment, one I’d never imagined for both myself and my baby. I can’t lie and say that isn’t still the case sometimes but, less so. You watch this incredible, resilient child developing in the most wonderful way and you have to be their champion, you have to be strong, learn from them and be their voice.
We have experienced people dropping out of our lives or engaging less as Max gets older perhaps because they don’t always know how to interact with him which is so upsetting because he is a human being like any other, he just needs a bit more time and patience when it comes to communicating. Ultimately, it is their loss but one of the biggest fears for any parent with a disabled child is ‘what happens when I’m not here to protect them?’ and that is when people turning their backs becomes more than just a bit upsetting and, even more reason for everyone to understand and accept difference, in any form.
What do you want to tell the world about your life as a parent of a child who has a learning disability?
Please teach your children about difference and acceptance. Talk about learning disabilities, educate yourself and those around you. It’s so important, I can’t stress it enough.
Do not underestimate any child nor give up on them because of what some 50 year old research tells you about their disability, every single child is individual. There is so much support available now and we know so much more about learning disabilities than ever before. We see incredible achievements from those who once upon a time may well have been institutionalised or cast aside!
Be a part of creating a future that is safe and accepting for Max and all children!
We asked Max the following questions:
What have you achieved that you are proud of?
Looking after my cats, Rocco and Luna and being brave at the swimming pool.
What would you like to tell the world about your life?
I love Mumma and Dadda, Rocco and Luna. I find things difficult sometimes but try my hardest and sometimes I just need people to give me time.
The resources below highlight how Royal Greenwich work alongside people with learning disabilities as well as the services available in Greenwich.
The Greenwich Local Offer has lots of information and resources for children with Learning Disabilities and their families, including; things to do, care and support services, staying safe, health and more Special Educational Needs and Disabilities (SEND) Local Offer | Greenwich Community Directory
The Greenwich Parent Carer Participation Forum (Who we are – Greenwich Parent Carer Participation Forum (greenwichpcpf.org)) brings together parents/carers of children and young adults with special educational needs and disabilities (SEND), up to the age of 25 living in Royal Greenwich.
They provide opportunities to meet with other parents and share lived experiences, provide support to access information, services and support and run information and consultation events.
The Greenwich People’s Parliament for People with a Learning Disability (Parliament – Advocacy in Greenwich) includes elected members with learning disabilities working alongside and challenging the local services to meet better outcomes for people with Learning Disabilities.
The ACE (Action, Change and Equality) group (Action Change Equality (ACE) | Greenwich Community Directory) enabled children and young people to tell Greenwich council what is good and what could be made better. ACE help to shape and improve services for children with Special Educational Needs and/or disabilities.
