Oh it’s a fog alright. A suffocating, all-encompassing, impossible-to-see-the-other-side-of fog. I’d been told that it often gets worse before it gets better, and now folks, we are now here in ‘Worseville’ or as I’ve often heard, ‘Struggle-town’. Yep,I’m feeling sorry for myself, but I’ve been here before and I will get through it.
There seems to be a lot of blog posts around the internet that suggests it’s common for parents of kids on the spectrum to lose friends and even family for lots of reasons I guess. But I suspect one of the main reasons is for the simple fact that unless they’re living it, they cannot begin to understand. While I don’t presume to know why this is the case for any Autism family, in my case, it starts with negative feelings and escalates to depression rather quickly and then I isolate myself and unfortunately my family too. My negativity can be so powerful that I feel like it’s swallowing me whole. I’m at the bottom and I feel like I can’t move up, let alone out. And as much as people want to help out, they don’t know how. And what makes this even more frustrating for everyone involved is that WE don’t even know how people can help.
I also feel that family and friends can’t grasp how Autism affects pretty much our whole world right now. Maybe, in time, when we understand our kids better, have better strategies in place, and (here’s hoping!) better sleep routines in place, slowly, we may be able to re-claim some of our old life. But, until then, we’re blindly soldiering on or more frequently, blindly stumbling through!
March/April has been really tough for all of us. Meltdowns are frequent and all-encompassing. We walk on egg-shells from the moment we wake until the last cherub closes their eyes for the night – sometimes this might be midnight. Some of you fellow special needs parents may be thinking, ‘midnight?? Half your luck!’, but I can assure you we’ve done the hard yards. Mr. C still doesn’t sleep through, and his first three years were absolute hell sleep-wise. I still remember sitting through mothers groups listening to all the other mothers (except one other) talk about how their 3, 4 and 5 month old babies were sleeping through. Depressing at best, soul-destroying at worst… Mine was 2 years old and still screaming the house down every night and well into the morning unless he could sleep on top of me. I had him and an 8 month old (complete with ear-splitting night terrors) sleeping with me, it was the only way we could survive! Mattress on the floor, with the heater or air conditioner on for some noise to help them sleep. Before I go into that, (that’s a whole other blog post!), I’d better get back on track. I’m hoping that by writing these next couple of blog posts, the majority of you will empathise and think, ‘yep, been there’, and the rest of you will get a glimpse into what really happens from day to day. And I’m also hoping that some will truly start to ‘get’ why we do isolate ourselves sometimes for the sake of our kids, and sometimes just for our own sanity. I don’t want pity, just understanding. And sometimes I’d like to just be able to vent without the other person trying to ‘fix’ things. And I’ll even mention some things that piss me off!
I’m going to have to leave it there for now, facebook is calling! Next post will focus a little more on what a typical day looks like for us. Goodnight.