Over the many years that I’ve been writing about our Autism journey, I’ve tried very hard to help people understand the very basics of how Autism can impact a family.
Unfortunately, that effort hasn’t always been successful.
When the people in your life don’t understand, it only serves to make life that much harder. Autism Parenting is so incredibly overwhelming and feeling like people don’t get it or worse, they judge you, makes things so much more difficult.
Autism parenting is overwhelming for a million reasons and those reasons may vary for everyone but I can at least share why it’s so overwhelming for me.
I don’t think there’s a day that goes by where I don’t feel completely overwhelmed by all the responsibilities I have.
I feel like I’m in a constant state of fight or flight because I’m always on edge. As a parent to three boys with Autism and various other special needs, I have to think ten steps ahead of the kids as well as physically be ten steps ahead of the kids. Without doing that, it’s nearly impossible to ensure their safety.
Everything that the rest of the world tends to take for granted, is something that I either never get to experience or have to wage war in order to get for my kids.
I worry about my kids from the moment I wake up to the moment I fall asleep at night, assuming I even get to sleep at night.
Speaking of that mysterious thing called sleep, if or when I find it is entirely dependent on if or when my kids do themselves. I’ll be real upfront and honest, if you look up chronic sleep deprivation, you’ll see my picture there.
I can’t even begin to explain the sheer level of exhaustion that is a byproduct of chronic sleep deprivation.
Even if sleeping at night wasn’t a problem, taking the kids to all their therapies, doctors appointments and simply trying to stay a head of them is exhausting enough. That doesn’t even take into account trying to meet all their unique physical, emotional and sensory needs.
Just so we’re clear.. If you assumed that having three kids with the same Autism diagnosis, meant that I have three kids with the same struggles, you’d be assuming incorrectly and I’d be inclined to remind you what they say about people who assume. 😉
The reality is that each one of my three kids is unique in every way.
Saying that everyone with an Autism diagnosis is the same is like saying every person is in the world is the same because we’re all human beings. Sure there’s things that are common across the board but that’s about it.
Each one of my kids have unique and oftentimes conflicting needs. This means that by providing one of my kids with something they need, I can be causing distress for one of my other kids. This is especially true when it comes to their sensory processing needs.
I have to make at least three different dishes for each of the three daily meals (often multiple times) because no one will eat the same thing and if I don’t cater to their food proclivities, they will go hungry.
If you assumed that kids with sensory related food proclivities will eat if they get hungry enough, you’d be assuming incorrectly and I’d be once again inclined to remind you what they say about people who assume. 😉
Kids with sensory related food proclivities will not eat sensory offensive even if they’re really hungry, anymore than you or I would eat a cat turd out of the litter box.
This is something that happens every single day of my life and if I don’t cater to my kids unique needs, they’ll end up losing more weight. This is a serious problem.
Few things are as fun and rewarding as powerlessly watching my oldest child go through a psychotic break for the umpteenth time. That’s sarcasm by the way. It’s truly one of the most heartbreaking things I’ve experienced in my life.
Then of course there’s all the medications and treatments I have to perform daily or weekly, to battle the things that make my sons physical and emotional health so fragile. I have to stay on top of and properly manage roughly 30 different medications between myself and my three kids. That’s daily and sometimes multiple times daily.
Everything is a battle.
I routinely battle insurance companies, fight for what my kids need in school, deal with ignorant people in the public arena who are all too willing to share their opinions of my kids with me, manage the inevitable daily meltdowns over things I oftentimes have zero control over and go to the ends of the Earth and back to meet sensory needs that are damn near impossible to meet.
Don’t even get me started on getting some of my kids to actually wear clothes, shoes or socks. Seriously, that’s in a whole didn’t Universe of difficulty.
What I’ve written above are just the things off the top of my head. I didn’t get into the guilt because that’s a post by itself. There are a million things that are just as exhausting and overwhelming for me that I didn’t mention.
I’m so tired all the time and even when I sleep I don’t sleep well because I have to sleep with one ear open.
Finally, I wouldn’t be doing this post justice if I didn’t mention something that no one wants to talk about and that’s the physical and emotional health of the parent. In this particular case, that would be me.
I would be remissed if I didn’t talk about how all the stress, anxiety and constant state of hyper-vigilance impacts me as a person.
Aside from stress eating and totally lacking anything that even resembles energy, I’ve also been waging a war with Depression. This has been a longtime war but it’s absolutely harder to manage when I’m constantly buried by all the things I need to do, all the things I’ve failed to do and all the things that I worry about.
This is just a portion of my personal experience and keep in mind that this doesn’t even touch on all the everyday life things that I do my best to muddle through but typically have to back burner.
I don’t know if this is something that is easily understood but I would think that at least someone out there can relate and if you can, please leave a comment below. Actually, I’d love for everyone to leave a comment and simply share your thoughts, opinions or questions.