While trying to make sense of our new reality, I found myself reminded of when our daughter was born. It was definitely the most significant trial of our lives to date. Rosie has Down’s Syndrome, which came as a great shock to us at the time.
Whilst the situations are so very different, I was struck by how the mental process we went through is so very relevant, and potentially useful, to what we face today. I’m sure that this will be true of almost every parent of every child with additional needs.
So, if you are an SEN parent, here are a few areas that I believe equip you with a little extra experience to handle this situation.
YOU UNDERSTAND THAT GOOD THINGS CAN COME FROM BAD SITUATIONS
When Rosie arrived our world collapsed. I knew little of what Down’s Syndrome really meant but I knew I didn’t want it in our lives. Our ignorance shattered our perception of anything positive that we had envisaged in our future.
In reality, it has been the most significant single event that will ever happen to us. It has enriched our lives and given us a broader perspective and a new and better value system. It has brought love and joy and given our other children a better start in life. We’d never have wished for it in a million years, and yet now we’d never give it back.
Now, when we go out on our doorstep every Thursday evening and see more and more people applauding our most important key workers I see the return of something long gone. A true sense of community. Not at all like the pandemic apocalypse predictions in the movies. I’m hopeful that the community spirit, appreciation of our healthcare system and many more things will be here to stay.
YOU’VE LEARNED RESILIENCE AND TO FIGHT FOR WHAT IS RIGHT
I’m not sure I know any parent of a child with additional needs that hasn’t found a strong inner voice that they didn’t know they had. These parents have all, at one time or another, been involved in a David-and-Goliath style battle with large organisations like their councils, educational establishments or the government to ensure that their child is given what they deserve as a human being.
When you need it you will be better prepared than most to ensure that someone sits up and listens to what needs to be done. You will be the one that sticks up for someone who doesn’t have a voice. You will be the one telling a stubborn, vulnerable person to stay indoors.
You know when to not take no for an answer.
YOU KNOW THAT THE MOST DIFFICULT TUNNELS CAN HAVE LIGHT AT THE END
When your life is changed as ours has been, you can mourn the loss of the path you had in mind. One way or another you have experienced the grief cycle. This can be a horrible and frightening experience the first time round. It is so because you assume that your negative feelings will never end. However, the grief cycle is a process – with a beginning, middle and end (kind of!).
Direct experience of navigating through this cycle and accepting your new reality is a powerful thing to motivate you to keep putting one foot in front of the other – one day at a time – the next time you have to go through it again.
These are some of the reasons that I have complete confidence that one day we’ll look back at this time as a distant memory. I know we’ll wonder how the hell we got through it. I know that there will be painful memories but also, in other ways, I know that the experience will have strengthened us and given us many positives that, for all of the difficulties at the time, we would never want to give back.
I know all of this because now, the way we mark the anniversary of the most painful experience of our lives…is by hosting a birthday party.