One of the things I feel is really important for people to understand, is some of the challenges that families like mine face. I will only speak for myself here but I encourage you to chime in with your experience below in the comments.
Autism is one of those things that impacts a family in ways that can’t really be quantified.
As a single Dad, raising 3 boys in different places on the Autism Spectrum, I can share some of the challenges that I personally struggle with. These challenges are things that many people don’t like to talk about and I’ll likely get criticized by some for sharing them but the reality is that the truth isn’t always pretty.
I don’t think there’s an area of my life that isn’t somehow impacted by Autism.
As an Autism Parent with about 14 years of experience, I still find myself at a loss. I’ve picked up some tricks along the way but because Autism is such a dynamic human condition, experience doesn’t always translate into knowing what to do.
Having 3 boys in different places on the Autism Spectrum makes things challenging for me because they each have unique and often conflicting needs.
On my very best day, I’m still only one person and there isn’t even close to enough of me to go around. That means I live every single day with the heartbreaking knowledge that I’m never enough to meet their needs. This leads me to the enormous amount of crushing guilt I experience for everything.
As an Autism parent, I feel guilty for so many things, both within and outside of my control.
I feel guilty that I can’t make things better for my kids.
I feel guilty that I can’t provide a better life for my kids.
I feel guilty because I’m so tired all the time.
I feel guilty everytime I see my kids struggle.
I feel guilty when I get frustrated with them for things outside of their control.
I feel guilty because I’m often too busy putting out fires that keep popping up that I never seem to make any progress.
I feel guilty because I can’t keep up with the house.
I feel guilty because sometimes I resent my kids behaviors, even though I know it’s not their fault.
I feel guilty because no matter how much I try I’ll never be enough to meet their needs.
I feel guilty because sometimes I just want to run away screaming.
I feel guilty because I don’t have as much patience as I feel I should have.
I feel guilty because their Mom left.
I feel guilty for just not wanting to be bothered sometimes.
I feel guilty for saying I have to use the bathroom, just to get a few minutes of quiet time to myself.
I feel guilty forcing my kids to go to school when they’re obviously in distress but have already missed too many days.
I feel guilty that I can’t stay on top of the bills.
I feel guilty when I can’t provide my kids with enough sensory friendly food and I have to improvise.
I feel guilty that my kids don’t have a more balanced diet.
I feel guilty if/when utilities get shut off.
In all sincerity, this I feel guilty because list could go on forever. My guess is that there’s at least one thing in this list that most of you can relate to and these are just off the top of my head.
Guilt is a very real issue for Autism parents like myself. Much of the guilt is irrational in nature, meaning that I feel guilty for things that I have absolutely no control over but I feel guilty anyway and it eats me alive.
It’s not an exaggeration to say that pretty much every single minute of every single day, I struggle with something that’s tied to Autism. What’s that you say? How could I possibly struggle while asleep? I’m glad you asked.. That’s easy, I barely sleep and when I do, it’s frequently interrupted and restless.
As an Autism parent, sleep is a luxury that I simply have to function without enough of or sometimes, none at all.
Sleep is a huge issue for many kids on the Autism Spectrum and subsequently their parents as well.
As an example, while my kids spent the night with their Mom on Friday night, I slept for 13 hours straight and woke up feeling pretty amazing. When my kids returned that evening, my youngest didn’t fall asleep until after 3am and was up before 6am. The 3 hours that I had a chance to steal some sleep were spent with his tiny little feet, dug into my sides as he clung to my arm.
Sure, I could have put him back in his own bed but that would have likely resulted in him waking up and not going back to bed. Sometimes I wonder if no sleep is better than 3 hours of restless sleep….
Perhaps you’re thinking to yourself that I’m being awfully negative. I suppose I should add that to the list of things I feel guilty about as well.
While this may seem like I have a negative demeanor, I would invite you to simply put my shoes on and walk around my life for a little while. You see, this is what life is like every single day. Sure, it’s unpleasant to read or even think about but I have to live it, day in and day out.
That’s not to say that there aren’t plenty of positive things that happen in between but I’ll focus on that later.
The point of sharing this is to help you understand that there are so many moving parts to being an Autism parent and it’s takes very little to cause those moving parts to come to a screeching halt.
I live much of my life minute to minute. It’s exhausting, unpredictable, overwhelming, unbelievably time consuming, isolating, frustrating and financially devastating.
As we begin Autism Awareness month, I’m hoping to reignite an open, honest and transparent discussion. The only way we can accurately show the world what Autism is like, it if we get to the truth and cut out the bullshit…. ☺