The flip side of memory making: There is always payback
Our whole ethos of Living it true is to show you guys that it is possible to make memories, have days out and holidays regardless of or even embracing all the diversities within our and your family. We spent several years hiding out, not leaving the house except to go to school due to us not having a handle or understanding of Samantha’s behaviour and anxiety. (I will be mostly using pictures of Stowie and Marsunda in this blog due to not showing the children whilst they are vulnerable).
Once we understood Samantha’s (and at that time Riley’s) anxiety and knew how to help her our experiences became much better and we were no longer scared to leave the house.
We love sharing our experiences with you all however I figured it was time to also show the other side of all our wonderful trips.
All our memory making comes at a cost.
For Riley even using his wheelchair, his joints hurt and he is swept away by sheer exhaustion for several days following a trip. He becomes sensory overwhelmed and struggles to regulate. He will have meltdowns, he becomes mostly non verbal (we will need to use makaton with him), he will need lots of cuddles and snuggles with his weighted blanket and his eating habits will suffer. We will also need to blanket burrito him for security. He will need hideaway spaces so he can feel safe and very low demands.
Samantha’s anxiety will heighten, she will become grumpy, argumentative, and food obsessed. She will become screechy and loud, this is how she is when she is disregulated. She has an need to control everything and everyone and will meltdown when this is not possible.
She will seek out lots of adult attention but not be able to cope with it and contrary it will never be enough all at the same time. Samantha will also need lots of time alone preferably with some form of technology although we have to limit this as technology in itself can cause disregulation in the children.
Both children will hummingbird. They buzz, physically vibrate, they go up onto their tippy toes and flap their hands whilst moving around the house with endless amounts of energy but the energy cannot be directed.
Paper gets stripped from walls, any piece of paper, tissue or like that is found is shredded and food is separated into its component parts before being either consumed or discarded.
As for myself due to my joint disorder and fibromyalgia, I need several days recovery on the sofa due to pain and exhaustion even if I use Liberty (my wheelchair). Depending on what we have done or whether I was in a flare beforehand, I may have to take naps throughout the day as physically my body can not make it through the day.
To get through the day and subsequent days I take morphine for the pain alongside all my other usual medications.
To cope with theme parks or holidays, especially travel days I use diazepam as I suffer with anxiety and panic attacks in highly crowded areas. Now I know some of you will be asking why on earth do I do that to us? Why would I go to a place like Disney world, not only the most magical place on earth but also the most busy and people populated?
Simple, our conditions take enough away from us that they are not taking away our family time or happy places. Yes there is pay back, yes we need medication to function in those circumstances but we do it and we are all the better for it.
