World Down Syndrome Day
The Personal Story Behind Carers Worldwide
Today is World Down Syndrome Day – a day that means a lot to us at Carers Worldwide, as our Founder Anil Patil was inspired to set up the charity after he and his wife Ruth became parents to Maya who has Down Syndrome. Their experiences working in India, combined with their experience of becoming unpaid carers themselves, sowed the seed for our work in South Asia.
Ruth and Anil worked together in India; Anil working on the issue of mental health and mental illness and Ruth working in children’s speech and language therapy. Through their work they met many unpaid carers, but becoming carers themselves made them look differently at these carers - parents, siblings, grandparents who had their own struggles and faced their own challenges. They saw them, understood them, and wanted to help.
We’ve spoken here to Anil and Ruth about the challenges and joys of raising a child with Down Syndrome, how it has inspired their work, and what message they would give to other parents of children with Down Syndrome.
1. What was it about Maya having Down Syndrome and you becoming unpaid carers that inspired you to set up Carers Worldwide?
Anil: Having Maya made us realise the importance of the role of unpaid carers and gave us a new perspective about what they go through having a child with a disability. One thing with Maya is her resilience. She never says no to anything - whatever is suggested to her she gives it a go and to some extent, that motivated us to create Carers Worldwide. We wanted to use our experience, working in India as well as being carers ourselves, to support other carers who don’t have the same support that we received. The importance of sharing your issues, challenges and difficulties with a trusted support network is one that cannot be overstated. We benefited from that and wanted to share that opportunity with others.
Ruth: Until you live something yourself you don't really appreciate all the complexities of it; you don’t understand what people are living, what people are dealing with. Previously, I would look at unpaid carers as people who would do the speech and language therapy exercises with the child and help support the child's communication development. Whereas after having Maya, I realised that there are a lot of other layers to it as well – the emotional impact and the physical impact and so on. It's that empathy and really being able to relate to somebody in the fullest sense that makes the big difference.
Anil: I echo what Ruth says. That deeper understanding and the empathy for the challenges faced by unpaid carers cemented our commitment to supporting other unpaid carers in similar situations through Carers Worldwide
2. What has been the biggest challenge you have faced in raising Maya in terms of her having Down Syndrome?
Ruth: For me it's around two main things. The first is accessing services and provision that's appropriate for her and that gives her the best possible opportunities. And the second is around dealing with people's perceptions around Down Syndrome and what someone with Down Syndrome may or may not be able to do.
The theme for World Down Syndrome Day this year is ‘End The Stereotypes’ and this is really meaningful to me because all too often it's assumed that “she can't go to a mainstream school” or “no, she won't be able to do gymnastics” or “she won't be able to get a job”, so at every stage of the journey you encounter a new set of stereotypes and misconceptions that you have to chip away at.
Anil: Yes, and we see these same issues for unpaid carers in India, Nepal and Bangladesh. There are a lot of stereotypes and stigma around disability, even coming from their own families, and unpaid carers need to be given the confidence to be able to stand up and fight back against these. There is also a big issue with accessing services and provisions for people with disabilities in these countries and that’s where our Community Caring Centres are so important, providing a safe space for unpaid carers to take their children, where they can access therapy, education that is targeted for them, as well as giving their carers a well-deserved break.
3. What has been the biggest joy of raising Maya?
Anil: She is very bold and has such love and laughter and passion for life. Having Down Syndrome has not stopped her. Her attitude is just incredible. I have never heard her say no – she’ll give anything a go!
Ruth: That she is really funny! She is also quite fearless and very confident and that in turn has made me more fearless and confident to go out and take opportunities. Part of the joy has been how much having her has made me grow as a person and it's taken me into arenas that I never dreamt I would have been in.
4. How has being parents to a child with Down Syndrome helped you in your work at Carers Worldwide?
Ruth: It was really striking when I went to Bangladesh recently to visit our projects there. Sitting down with groups of mothers and being able to say “I'm the mother of a disabled child as well” and you just feel that immediate bond. I think that really helps with trust, and people realise that you understand what they’re going through and can relate to their struggles and worries.
5. What do you wish you knew before you started your parenting journey with Maya?
Anil: I wish we’d known how to fight more for services and treatments for Maya – how to advocate for her and what she needed. In the beginning we didn’t have the knowledge or confidence to challenge or question what we were told and a lot of things were just written off by professionals as due to her having Down Syndrome. But I don’t think this was good enough.
Ruth: Yes, I wish we’d known more then about how to advocate for her and for ourselves. Advocacy is a big part of our Carers Worldwide Model, advocating for the rights of unpaid carers, but also helping carers to advocate for the rights of the loved ones they care for.
If I could tell my younger self anything, it would be that Maya would be doing all the things that she's doing now, that she wouldn't have health problems anymore, that she would have a whole heap of people around her that respect her and will be there for her. I’d tell myself, you will get to meet lots of interesting people along the way and that you will come through the tough bits. You will be able to cope with the challenges.
6. What message do you have for anyone who has just become a parent to a child with Down Syndrome?
Anil: For me it is about acceptance and hope. Embrace the journey, celebrate the milestones and remember that you're not alone.
Ruth: I would say that it feels scary and there are lots of unknowns but remember that they’re a child first and the Down Syndrome comes second. So, enjoy them, hug them and try to get connected with other parents that you can get advice from and share your worries with. Find your tribe that is going to support you in the years to come.
