Mama Love Special Yoga was born out of this mama’s love for her special child, Carys.
Carys is 22 months old and a little ray of sunshine. She lights up the room with a blinding mega-watt grin for every single person she meets.
She also has a rare genetic condition called Williams Syndrome caused by a micro-deletion of chromosome 7.
Williams Syndrome is a random condition affecting around 1 in 18,000 children in the UK and symptoms include global development delays, cardiac and kidney problems and anxiety.
Carys had her last Pediatric review in April 2016 when she was 18 months old. At this point she was crawling but not walking and was non-verbal. She was assessed at 10.3 months for her physical development and gross motor skills and 6.9 months old for hearing and language, which we knew in our hearts but was quite disheartening to see in print.
Our aspiration for Carys is that she remains happy, healthy and leads a full and rewarding life. It seems to be the case that many adults with Williams Syndrome often end up feeling isolated and frequently suffer from depression so we were really keen to start Carys on a positive path from her early years.
Drawing upon my personal experience with yoga and its transformative benefits, I firmly believe a regular practice will help Carys not only with her physical and cognitive development but also with managing any mental health issues that she may face in the future. To me, yoga is a lifestyle choice and it is a life I want for Carys too – a calm in the storm, a space for her to be herself and rise up to challenges.
In May this year I attended the Yoga for the Special Child ® course with Sonia Sumar, the pioneer of special yoga, with over 40 years’ experience helping children with disabilities through yoga.
During the course it became clear that I had unknowingly been holding onto a lot of emotion about Carys. Instead of expressing my grief and shock at her diagnosis (we found out when I was 37 weeks pregnant) I buried myself in work, single-mindedly sourcing therapies for her and ferrying her to appointments. The responsibility of being a parent to a child with special needs lay heavily upon me and I was terrified that if I let anything slip that I wasn’t being a good mother. I didn’t allow myself very much time to simply be with her and connect.
I was very upset about this realisation but Sonia simply told me to relax and said that Carys would be fine. Somehow hearing her say this, with her many years of experience, allowed me to take a breath and stop worrying so much about Carys’ future. Carys’ medical team are wonderfully professional and we are lucky to have them but they approach us very clinically and especially when she was a new baby it would have helped us so much to hear a few words of reassurance.
I also realised that I often assumed that Carys had symptoms of her condition before they actually presented themselves. I was leading her down a typical Williams Syndrome path with all the associated medical issues that could possibly arise. For example, I told Sonia that I thought Carys had sensitive hearing as she cried during ‘Oms’ and chanting but Sonia pointed out that music is very emotive. Since then I have persisted with chanting and Carys is fine. She no longer gets upset and sometimes joins in. She may eventually have sensitive hearing but this doesn’t appear to be a problem at the moment, so why chase it? I now try not to make assumptions. Carys is unique and has already surprised us with what she can achieve.
Since the course, Carys and I practice a little yoga every morning. Some days are more effective than others. Sometimes she gets distracted and doesn’t want to do many postures and other days are really productive. I have to keep reminding myself to take my time and not have any expectations. It doesn’t matter if we have a short session, it is all about the routine and praising every tiny win. This really spurs her on.
The breakthroughs are unexpected. For weeks I was moving Carys through quite basic postures such as foot rotations and leg lifts and holding her in Tree position. Then one day, quite out of the blue I asked her to go into Tree and she raised her leg up by herself!
This was a huge deal for us. Before this point I thought she was just a passive participant but this active involvement made me realise that she understands a lot more than I was giving her credit for. I just needed to trust myself and have confidence in her. I started giving her the chance to perform other moves herself and I was amazed that she was able to do the foot rotations and leg lifts too.
This was a breakthrough more for me as Carys was perfectly capable of doing the positions, I just didn’t understand that and, without meaning to, was treating her like a child with limitations and not giving her appropriate challenges. From this point I stopped talking about any limitations arising from her condition in front of her. It really was a game changer in my attitude. As is often the way, the child becomes the teacher.
So where are we now? In terms of physical development, Carys has low muscle tone so we focused on strengthening her core and legs. We like the Tree position as Carys enjoys the celebration when she lifts her legs herself. She can hold Plank position for several seconds and then, supported by me, she moves into Downward Dog and comes up to standing. This morning she actually moved to standing by herself showing that her core has become stronger.
Although we were told by other Williams Syndrome parents that their children did not walk till 3, 4 or 5 plus, sometimes not at all, Carys has just started walking at 22 months.
She is feeding herself and can say a few words, including ‘Hari Om’ when we are chanting. Her cognitive development has improved, she has started to pick up Makaton signing and she is highly socially interactive. In 4 months she has transformed from a baby (in our eyes) to a little girl.
Her favourite pose is child’s pose and since practicing yoga Carys now puts herself into this position to rest during our yoga practice and frequently when she sees a nice sunny spot she wants to relax in.
I am really positive about the future for Carys and cherish our yoga every morning. Yoga for us isn’t a daily therapy, it is our special time to connect before the hectic day begins and I can enjoy what a beautiful, happy little girl she is.
Mama to Lucas, Delilah and Carys
Founder of Mama Love Yoga London