Much of the connection and communication in the Down syndrome community happens online. This in my view is both a blessing and at times a burden.
The benefits are abundant, the opportunity to ask questions, be informed, form bonds with other parents, share photos, video’s, arrange catch up’s and receive support when life throws up curly situations. I’m extremely grateful for this strong and inspiring community and look forward to a time when my son can become an active part of it.
Like everything in life, there is of course a shadow side to online life, the main one being, in my opinion, the sheer volume of information about Down syndrome on social media. This plethora of opinion, experience and advice, however well meaning, has the potential to inspire and motivate but also make you feel overwhelmed, confused and worried.
We have to have a strong sense of self and balance in our own lives, in order to sift through the mass of information and opinion that is the Down syndrome community. Like every large community group, it’s fractured and largely self-policing. If your opinions sit outside any majority, you may not feel comfortable to express your thoughts or ask questions. If you find yourself in this situation, my advice would be to consider finding groups and individuals that are more aligned with your philosophies.
The other challenge of online life are families and individuals who appear to really have their fingers on the pulse, they seem to be juggling life with Down syndrome well and have all the balls in the air. If I’m in a positive place, then I can feel really inspired to hear about the latest therapy, recipe or supplement, however when I’m under the pump and the balls are all over the floor, I can start to feel panicky. When this happens I tend to switch off from it all and try to remember that I’m doing my very best, as we all are, and that everyone has their own challenges to overcome.
When it comes to information about natural therapies and remedies for our children, the information online is positively deafening. Some parents are able to throw themselves into research and thrive doing so, they are an extremely formidable and empowered group of individuals, to whom I am very grateful. I remember when I started to research in online groups and it felt like I was thrown on to a motorway. The rapid pace of information passing me by was scary for this new mum and I had to back off until I was ready.
This experience was one of the main reasons I started this project, as I wanted a more user friendly, static approach to learning, something that online groups simply can’t offer. I’m acutely aware however, a year into the development of this foundation, that I’m only adding to the online noise, sorry, which is partly why my articles and posts are few and far between!
We are a unique online group, strangers who share a deep and meaningful bond through our children. Outside of this online bubble of Down syndrome connection, we have completely individual lives, live in different cities, have our own way of parenting, preference for health care, spirituality, passions, tastes and views on Down syndrome and what it means to us and our families.
I’m not quite sure what the purpose of this article is, except to say, don’t lose sight of that unique life, don’t let it be buried under online information and opinion. The challenge is to know how to cherry pick what’s right for you and integrate into your world whilst letting the rest slide. You are always free to decide how you navigate this journey, it has to be uniquely yours. It does take time to sift through the information available and discard what doesn’t feel right, so be gentle with yourself about that.
When you’re in a minority group, it’s natural to yearn for belonging and approval. We all want to feel like we are included, on the right path and doing everything we can to help our children thrive. The Down syndrome community offers a great beacon of belonging for parents, however you may still find that your thoughts and choices sit left of centre and don’t fit with the mainstream. If this is the case for you, then I feel it’s important that you listen to that, honour it and pursue it with a great sense of relief and confidence.
I of course have my own views on healthcare and what Down syndrome means to me, thoughts and feelings that have taken shape after navigating my way through available information and options. I’ve settled on a path that is working for us as a family and feels right for now.
I also have some very personal views on health and wellbeing for children with Down syndrome, as I’m sure you do too, thoughts that I share with only a few people in my life. One day these opinions may reach the broader community, however for now, it feels safer to nurture and protect them in my own heart and mind, for fear of being judged.
We are all unique, the path rarely runs in a straight line and there’s never one way that fits the majority. This truth is both frustrating and a divine blessing in equal measure.