With World Down Syndrome Day (WDSD) approaching, I’ve decided to look into why blue and yellow might have been chosen to represent Down syndrome. There is a particular reason behind the 21st of March (03/21) being selected to celebrate WDSD – people who have DS have three copies of the 21st chromosome instead of two.
Colours can have an emotive impact on us, they can also remind us of certain objects/places/people. I put a question box on my Instagram story recently asking how the colours ‘blue’ and ‘yellow’ made you feel or think. It was interesting to see the most popular answers and some of the less common answers. I wanted to see if I could make a connection between these thoughts/feelings and Down syndrome whether that be with receiving a diagnosis or living with a family member who has DS.
For the colour blue, the most common emotion/feeling was by far ‘calm/peace’. A common thing I’ve heard parents of kids with Down syndrome say is that their child has taught them to slow down. This might be because kids with DS are often more likely to have heath concerns at birth meaning more time spent in hospital or at appointments and neither can be rushed. Developing and meeting milestones will more often than not be achieved in their own time, and a great deal of patience can be required from parents and caregivers. Slowing down and celebrating each milestone is so important and it can teach us to enjoy the little things. Trying to find the calm in the mayhem of hospital stays, appointments, therapies and numerous phone calls about your child may not always be achievable but it can definitely be helpful. Personally, Evie has taught me to slow down and appreciate each aspect of our lives a lot more. She is developing at her own pace, excelling in some areas and taking her time in others. This can come with huge frustrations, especially if you find yourself falling into the trap of comparisons. Comparing your baby to friends who have neurotypical children, or comparing your child to other children with DS who are at a similar age. Finding peace with the cards you’ve been dealt instead of comparing them can be hugely beneficial, although it’s sometimes easier said than done.
“Appreciate the little things more, take things at his pace. Every little achievement is a big deal”anon reply from Instagram stories
I had some beautiful answers when I posed the question about ‘slowing down’ on my Instagram stories. The majority of people said that their child who has DS has taught them to live in the present and appreciate every day. With such unknown futures and hurdles that can arise, it’s difficult to plan ahead but slowing the pace is often what we have to do as parents. One person said that she loves to watch her daughter love with no judgement. How wonderful to be able to give that kind of love, and how special to be the one receiving it. Another point frequently mentioned was that our kids fight so hard to be here from the very beginning, they face so many obstacles and yet still continue to exceed expectations – it really makes you appreciate your time with them.
My latest experience of how Evie has taught me to slow down is with her weaning journey. We started out just before she turned 6 months old – she’s almost 8 months now. With Evie being NG (nasogastric) tube fed since she was 6 weeks old, we have been closely linked with dietetics and now speech and language (SLT). We organised a video call with one of the SLTs and tried Evie with her first taste of solids; she didn’t hate it. Our goal was not nutrition which took the pressure off; instead, we were trying to give Evie positive oral experiences. Because of being tube fed on a regular schedule, it is unlikely Evie has ever experienced hunger and therefore has not made the association of eating solids to feeling full. She also stopped drinking bottles at around 8 weeks old so she lost that reflex. Her heart condition doesn’t help as she tires very quickly doing any activity, including sitting up and eating. These factors have made our weaning journey very staggered, sometimes she’ll take something but more times she won’t. It was really beginning to stress me out until one day recently I realised – Evie will lead me in this journey. I don’t need to waste my energy or hers, she will let me know when she’s ready again. Being able to take a step back and slow down has refreshed me and prevented me from giving in to ‘mom guilt’.
“I can’t rush him to reach his milestones, so why rush our daily lives”anon reply from Instagram stories
The next most common emotion was ‘sadness/sorrow’. I’m glad this one came up as the colour blue is often associated with a ‘down’ or sad feeling. Interestingly, two people responded to my story saying that when they had blue paint on their walls, they each experienced a low point in their lives. A diagnosis of Down syndrome can often come with a multitude of feelings, sadness is definitely one for many people. Mourning the loss of the baby they may have imagined; sadness for the potential health conditions that can come with a DS diagnosis; worried for their future being so unknown; also sorrow for their unborn baby and the obstacles they might encounter in life such as bullying or discrimination. Experiencing sadness is not always a negative thing, as it can often make you re-evaluate and see where your feelings or actions may need to be adjusted. If I didn’t spend any time being sad about Evie’s heart condition being so complex and that we don’t know how long we have left with her, I would surely forget to enjoy the good times and appreciate each minute I have with her. I don’t hide my emotions from Evie either, she can sense most of my feelings anyway and I think it’s important for her to see how much she affects me and how much she means to me. This being said, emotions are often fluid – there are plenty of times where I’ve felt so upset I don’t think I’ll ever see the positives again, yet the next minute, hour, day I am filled with joy and can’t imagine feeling down.
Sometimes it certainly feels as though you can’t slow down and find time for yourself. Health diagnoses can make family and friends unsure about their capability of looking after you child, our own worries can also prevent this. It’s difficult to find any ‘me-time’ as you end up being the sole carer for your child. The appointments, early intervention (physio, occupational therapy, SLT), phone calls, surgeries etc can also begin to take over and a few people mentioned feeling as thought they didn’t get to enjoy the newborn or baby stage because of all this. Another factor is that you focus on your child achieving developmental milestones which can cause added stress if you feel they are falling behind in certain areas.
For the colour blue a lot of people mentioned the ‘sky’ and ‘ocean/sea/water/waves’. There’s an association with each of these with openness, freedom and endless possibilities. This is a beautiful way for parents to imagine their how child’s life might look; just because they have DS, doesn’t mean that they won’t accomplish their goals. With adequate support and resources someone with DS can work towards achieving their hopes and dreams. There is often a lot of focus put on individuals with DS that have accomplishments such as acting, modelling, small business owners. This is fantastic and those people should of course be celebrated. However, emphasis should also be put on the celebration of smaller achievements such as learning to walk, communicate, pass a test in school, live independently or even semi-independently. Everyone’s individual goals should be recognised, no matter how big or small.
For yellow, the top answer was unsurprisingly ‘happy’. One of the most common things I’ve heard about people who have Down syndrome is that “they’re always happy”. Now, of course, we know that every person who has DS is an individual and experience a full range of emotions. Having said that; in 2011 there was a lovely study done on self perceptions of people with Down syndrome. 284 participants over the age of 12 who had DS were involved in the study. Almost 99% of those interviewed said they were happy with their lives; 97% indicated they liked who they are; and 96% said they liked how they look. Just under 99% expressed love for their families, and 97% liked their brothers and sisters. 86% of people with Down syndrome felt they could make friends easily, those who stated they had difficulties also had isolating living situations. A small percentage expressed sadness about their life. That’s a pretty incredible outcome, I’m sure if the same study was carried out with neurotypical applicants, the results would be very different. Despite this, it’s still important not to generalise and to continue to be aware that people who have DS do experience all sorts of emotions.
A very common emotion that came up for the colour yellow was ‘hope’. A diagnosis of Down syndrome can bring fear for many people. I feel like this has a lot to do with the way health care professionals provide information to new parents. Although Ross and I never had any negative experiences with Evie’s DS diagnosis; I have heard plenty of other parents that unfortunately did. Hearing things like “I’m sorry, it looks like your baby has Down syndrome” or being strongly advised to terminate their pregnancy solely based on a DS diagnosis. Even the terminology used “chromosomal abnormality”, “an error in cell division”, it automatically leads you to believe that there is something wrong with Down syndrome. Instead of igniting fear in new or expectant parents, they should place more focus on providing hope. Hope that this new baby will have the same needs as any other baby. Yes – there’s a potential for added healthcare needs but there’s nothing to say that a neurotypical child won’t encounter any health concerns in their life. Instead of being told their child will never achieve certain things like walking, talking, going to school – they should be given hope that with the right support and resources their child will achieve these milestones and much more.
Another strong answer was that yellow reminded people of ‘sun/sunshine/sunny’ and ‘bright’. Evie was born during a heatwave so the sun will always be a reminder of that special time. The colour yellow certainly makes me recognise Evie’s brightness. She has taught us things we never would have learned any other way. So many people I’ve spoken to feel that their child with DS is the light of their lives. I recently listened to a podcast hosted by Rebecca Kelly where she interviewed Mellisah from @themindofamammy. Mellisah explained beautifully that her and her partner’s “lives began when their daughter (whose name is also Evie) was born”. I feel like our Evie definitely has brought light and warmth into our lives, even from before she was born.
I asked Ross to write down his feelings when he thought about the colour yellow and Evie, this was his answer:
“I’ve always loved the colour yellow, it reminds me of summer; of sunflowers and happiness in general. These are the same things I think of when I look at Evie too. She brings me more joy than I thought I was capable of. In my mind, she’s a bundled up bright ball of happiness”Ross