Isolation is all to common with the special needs community and my family is no exception. While it wouldn’t be fair to say that everyone experiences this, many families do.
I’ve been thinking about this lately because it honestly feels like life is simply passing us by…
It’s been said to me that we sort of isolate ourselves and I never really agreed with that but in a way, there’s some truth to that, whether I like it or not.
The truth is, living my life isn’t something many people could even imagine.
Because things are so challenging, it’s exceptionally easy to find myself so literally wrapped up in our day to day survival, that it never really occurs to me or is even a priority, to worry about anything that isn’t absolutely necessary.
A great example of this is my Grandparents.
I called my Grandmother yesterday to wish her a happy Mother’s Day and apologize again for not making it up to see her.
She lives over an hour away but it’s not really the distance that’s the problem. The problem is that something always comes up and holds my attention hostage and my best intentions get washed away and I simply never make it up there or even remember to call and say hello.
The truth is I feel terrible about this and I certainly don’t do this intentionally.
It just seems like we are living from one crisis to the next and there just isn’t much I can do about it.
Between my chronically ill wife and three boys with Autism and various other health and emotional challenges, there’s always something happening that takes priority over everything else.
Just within the last two weeks alone, we had our fears confirmed about Gavin being a sociopath and while it doesn’t necessarily change anything, at the same time, everything is different.
Only a week goes by and we learn that Elliott is having suicidal thoughts and ideations. That’s basically consumed us for the past week as we try to get him whatever additional help he needs to battle severe depression and anxiety. At the same time, he gets sick with a respiratory something and also gets pink eye.
His new meds were called in wrong and they still haven’t been fixed and that’s something we are actively trying to rectify.
There’s just no way to really set this stuff aside and go visit with friends or family because it’s so all consuming that even if we weren’t constantly buried, we’d be to exhausted from digging ourselves out to do anything about it.
When you’re living in the trenches everyday, things are prioritized a little differently.
So you see, isolation doesn’t always require someone cutting someone else out of their lives, although that does happen.
Isolation can sometimes be the natural result of special needs parents, simply doing what needs to be done to take care of their kids and trying survive the day.
I kinda feel like I have resigned myself to the fact that special needs parenting and having a life outside of that are mutually exclusive things. It sucks and I often find myself wishing it was otherwise but the reality is that more often than not, it’s outside of my control.
I’m sure this doesn’t apply to everyone but I imagine someone out there is reading this an nodding their heads because they can relate.
Rob, I hope in some way that this blog helps you express yourself and connect, but I know that parenting alone in the trenches can create isolation. As for your son who is struggling with the suicidal thoughts, is he connected with a counselor he likes and you feel is competent? I hope so 🙂
He absolutely is. Elliott’s got a huge support system. Thanks for your thoughts… 🙂
i agree that it seems a self imposed isolation. one thing i have found is that with the few friends i have managed plus my sister (that is in denial about how bad it is here even though i have told her and told her) i really cant even stand being at somebodys house and hearing their “problems” because to them they are big problems to me it is a drop in the bucket but i dont say that to them that sounds real terrible to say but i would rather save my energy and gas for all my real problems. again what i said sounds real terrible but i am overwhelmed right now. good thing is that 2 of my good friends (but not my sister of course) offered to help me get my son to ivig if i have to be at work. they really love us and i love them and it means so much to me
You have inspired me to reach out to some people I needed to reach out to today, so thank you for that.
No problem… 🙂