In January 2020 we discovered that our second child (and fourth pregnancy) had a high chance of being born with Down Syndrome. This was confirmed shortly thereafter with a Non Invasive Prenatal Test (NIPT) and scan by a Fetal Medicine Consultant at St Mike’s Hospital.
Following our high chance result I was able to access good clinical support from my midwife (I will post about her separately because she provided the type of support that I think all women should get!) and the Fetal Medicine Unit. There was no 'care pathway' per se, but I had regular scans and had positive and helpful discussions about how we would deliver her safely. I now know I was pretty lucky to have this level and quality of care and support.
From the time I received the call from the screening midwife, sat at the bottom of the stairs on a cold Friday afternoon in January 2020, it took me about 2 hours to be at peace with the prospect of being a parent to a child with a learning disability and not much longer to become excited by it. We had miscarried a year before and all we wanted was for our child to be healthy and happy. Initially we were cautioned that there were possibilities that there could be health issues, but overall, knew that we would be ok. A few days later, I was out walking and it suddenly occurred to me that this was very much meant to be. We found out our baby was a girl. Our eldest daughter had already started telling everyone she was a girl called Frida anyway, so we thought we should probably check before it got too out of hand!
I enjoyed my pregnancy. I was convinced I felt her move at around 14 weeks and felt incredibly connected to her from the very beginning. I relaxed even more into enjoying being pregnant (in spite of the majority of it being in lockdown...) after early scans indicated that her health looked good, as far as they could tell. We looked forward to welcoming her into our family and community and I found comfort in researching just enough to put together a list of potential resources I might need to draw upon once she was born, but not too much as to worry about every possibility. I joined a brilliant group called 'Positive About Down Syndrome: Great Expectations' - a Facebook group for expectant mother's with a diagnosis or high chance of Down Syndrome. The support and information on the group was incredible and I found myself sharing my views and experiences where I thought they might help others and learning a lot from other people about what to ask and what to expect.
In joining these groups and doing the research I did, I learnt quickly that most people still did find the news devastating and grieved the child they thought they were going to have. Most change that view as soon as they fall in love with their child and realise that life is actually pretty normal and is usually a lot of fun. You will learn, if you follow this blog, that the Down Syndrome Community has a good number of very passionate advocates, some with Down Syndrome as self advocates, and others who are family members. You will learn that most people who have Down Syndrome, or live with someone who does, have a brilliant life and really would not change a thing.
I am lucky to have friends with Down Syndrome and I have met quite a few adults with Down Syndrome in my job as a Mental Capacity / Court of Protection solicitor. The discussions I had with friends and family all centered around the fact that we could manage any challenges relating to a learning disability. We were fully prepared for that and fundamentally, we were just excited to be having another baby. We had nothing but positivity and respect from those we spoke to and a lot of people said very lovely things about us as parents.
When she was born, Frida Luna Rose Flanagan was perfect. Big. Noisy. Strong. Healthy. She went straight for a feed as soon as she was put onto my chest. She has barely stopped since... She is what some might refer to as a 'Bonny Baby'. She is amazing.
We progressed to the 'New Parents' Group with PADS. I spent a lot of late night feeds on the group and saw what types of concerns and issues people were facing, and found that there was quite a bit of stuff that I could help out with.
As those early days and weeks went by, the the idea of a blog started to grow. Titles of posts started flying into my mind, and an idea for a project started to emerge, so I started writing notes in the middle of the night whilst feeding. I found it helped me formulate some of my thoughts on some of the issues that were being discussed and helped clear my mind. Then came along Down Syndrome Awareness Month and I posted each day with a view to educating people about the reality of life for someone with Down Syndrome.
The response to my posts was positive and I really enjoyed writing, so along with my legal knowledge and understanding of the 'system' that we may have to navigate in Frida's future, the idea of this blog came together.
I settled on ‘Frida's Footsteps’ because the types of issues I will deal with in this blog will grow alongside her. It is not a place where I am going to share everything she does in detail. We don't share pictures or too much detail about our children on social media and I am not going to start now.
What I hope it will be is a place to share information, resources and ideas that might help people in a similar situation to us, at every step of the way.
This may not be something I deal with head on, at least initially, but sadly a large part of society is not entirely on board with 'different'. There is still a lot of discrimination against people with disabilities and a lot of work to be done in changing attitudes. There is also a vast amount of work to be done to change the legal structures that support people with disabilities and their families, too. I hope to be able to share ideas around navigating the very difficult system that Frida might find herself part of.
Early Intervention is huge for a baby with Down Syndrome, but we took this approach with our first little girl, too, putting a lot of effort into her development. We are not going to approach Frida's upbringing any differently and in fact so far, we haven't spotted any real difference between them other than their size.... Frida may just need slightly more time and support, and some specialist input along the way, but we know she will get there - just like any child - in her own time. I want to share my ideas for some of the things we do, and follow these threads through as she gets older, to see what impact they may have had. If it helps a few people with ideas for supporting their child along the way, then brilliant.
So expect posts about what public body is responsible for what service and posts about introducing Makaton, physio, reading and phonics at an early age alongside posts about changing perceptions in society and challenging decisions and legal framework.
Most of all, I also hope it will be a place where I can help people understand how our life will be no different because we have a child who has Down Syndrome. It will be what we make of it and I have a feeling it is going to be a lot of fun.