Michelle777

Hi. Thankyou for posting this question. It gives me so much relief to find people with similair struggles to my own. I have hyperadrenergic POTS, EDS and eill soon be investigayed for ASD. I do an insane amount of work to develop strategies to calm what feels like a constant storm, that goes way beyond the parameters of mind or character. I often feel trapped in this body, flooded with adrenalin. Hyper alert, managing sensory information, trying. beyond the fog, to articulate what's happening against the lack of blood being sufficiently circulated back up to the brain. All beacuse I stood or sat up. I am an extremely sensitive person and I dont recognise myself at all in the midst of meltdowns. It feels like my body is in the driving seat, my mind riding along in the back, trying to direct me away from a car crash. It helps massively to have people around you who understand that we are starting from an uneven playing field. We are at a major major disadvantage for regulating. That is primarily physiological, not psychological, although adopting breathing techniques and adaptive behaviours ( contracting in a gap when feeling overwhelemed, silence, running outside) all really do help manage things better. The best thing you can do for your son, is help him understand what is happening to his body during postural changes. How this creates additional challenges for him and how it is not a psychological weakness. It is a disability that can be managed with better understanding. For himself and his network of support. I can imagine it must be extremely difficult to watch as a parent. It can be channelled into something managable, even useful at times, with the right support. So much empathy for you and your family. It can be a devastating, isolating condition. Please let him know, from me, he is not alone. If there is anything at all I can help with Please let me know Michelle