I’m worried I may sound like a broken record, but I’m incredibly passionate about people with disabilities and their families experiencing more than I feel we do. Yes, it’s exhausting and you have to be “on” all the time; but that’s not your child’s/loved one’s fault – there are options available in most states for some kind of respite.
Before you start typing the response of how there is “nothing” where you live, ask yourself how do families without disabilities do it? They need date nights to keep their relationships fresh, they may be single parent households or have both parents working and are juggling getting their kid(s) to/from dance, sports, etc. How do they cope?
Yes, their children do not have disabilities – so what? Why are we letting the disability define what we can or cannot do? For years my wife and I wouldn’t go out to dinner, because we were afraid of meltdowns. I go out now, and it’s taken a LOT of work to help my son understand his boundaries – and I work with him while we’re out. I wish I could say I was a shining example of this, but at best I’m a flickering candle. I still consciously decide not to do things with my son because of the emotional toll I THINK will occur.
This is the important part – I “THINK” it will occur. I haven’t actually given myself the opportunity to be proven wrong. And, because this is my mindset, I find myself looking for reasons to be proven correct – creating a ridiculous loop, unfair to me and my son. One way I’m working on this is taking him places I know he enjoys either before or after an errand I need to run where I’m unsure of how he’ll act. Yes, not ideal – but it’s a start and it’s changing my internal narrative (which is the important piece imho).
I’m also working on creating “natural” supports. We will meet with the new school’s program soon, and I think this will provide him opportunities to form friendships and gain exposure. I am also looking for ways to expose him to new things to foster hobbies, with the long-term goal of either dropping him off or having him Uber (ideal). These things take time, and very few of us fell in love with something the very first time we did it – so I’m reminding myself to be patient with my son as well.
My challenge to all of you – what is (1) small thing you can try to improve YOUR quality of life? Little changes can have an enormous impact, if you’re open and patient enough to see it through; and be okay with it not working out exactly as you’d planned.