I was going to follow on from my blog last week but, as is typical, life has got in the way! I have had a difficult week, including a teenager creating arguments (of the kind only teenagers can!); I have felt incredibly betrayed by people I thought were friends; finally, I have found out that my gorgeous son, who has epilepsy, is at very high risk of SUDEP (Sudden Unexplained Death in Epilepsy Patients). Considering that it was such an eventful week emotionally, I felt that I should write about how difficult it has been to cope with one of these as a female Aspie.
Obviously the event which had the most impact was the news about my son. When his epilepsy nurse phoned me, I was not prepared to hear her confirm what I already suspected but didn’t want to face up to. In typical Aspie fashion, I didn’t process the information straight away. I had already done a lot of research on epilepsy and SUDEP (well, isn’t that something a lot of us with ASD do rather well: research?!), so the next thing I did was find a support group on Facebook for people affected by SUDEP. Well, that’s when it started to have an impact; I felt like I had been hit by a bus! The reality is harsh. Five days later I still feel numb, like I’m in shock and unable to think with clarity.
I have managed to avoid a major meltdown, although I have had a few shaky moments. I guess I don’t know how to understand this; are NT parents able to process such information any better? Does everyone feel so confused and bewildered when faced with harsh news? I still feel incapable of dealing with anything other than the most basic of functions.
Ok, so this entry seems to be a lot abut epilepsy and its personal effects on me but here is the point: processing information is difficult for me. My executive functioning skills aren’t great at the best of times, after such a traumatic time, it’s as if my executive functioning skills have become nigh on non-existent! Support…the right support…is definitely the key to coping! Love and care to all.