Why being an #Autism parent is so overwhelming and stressful

Over the many years that I’ve been writing about our journey, I’ve tried very hard to help people understand the very basics of how Autism can impact a .

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. is so incredibly overwhelming and feeling like people don’t get it or worse, they judge you, makes things so much more difficult.

Autism 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 , 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 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.

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  • Moe

    What is it you think parents without autistic children take for granted?

    Other parents also have appointments,meals, house cleaning, tantrums, sports, , jobs. All of these things. Maybe not to the same degree, but you act as if people don’t understand or get to see it from your side. Have you ever tried seeing from their side?

    And as for your energy level, I’ll suggest this again, get your testosterone checked

    And now with Lizzie back, isn’t this easing up a little for you? Can’t she take some of this weight?

    And the sleep thing, IMO you put the kids to bed way too early. Of course they will be up at the butt crack of dawn when they are in bed before dark

    Just some things to think about from the other side

    • Moe,

      You just don’t get it. That’s okay. Thank you for sharing your thoughts….. 🙂

      • Moe

        You just 100% proved my point. Thanks for doing that

        • I meant no disrespect but you don’t get it… It’s okay that we don’t agree.

          • Moe

            It doesn’t take anything away from what you do to say yes all is exhausting. I said it wasn’t the same level, but it’s like you refuse to be anything other than ‘the worst off’ when that’s simply not the case. All parenting is hard, just different levels of hard. It’s ok for you to try and say that without a but at the end of it. I may not have therapy sessions with 3 kids. But often times I have 2 kids that have to be at different places at the same time and only one of me. Both stressful, just different.
            You have to try to understand and accept others situations before you can expect others to do you the same courtesy is all I’m saying

            • Moe,

              There is a world of difference and whether you choose to acknowledge that or not is up to you. It’s like saying that walking on the side walk and walking in the moon are the same thing because walking is walking.

              Agree to disagree…..

            • Kim Williams

              Moe – I have been “regular parent tired” and “ tired” and I will tell you that right now Rob is probably too tired to even explain the difference. This isn’t about testosterone level or having to be in two places at once. This is the difference between “black lives matter” and “all lives matter.”. It’s about perception.

              A friend of mine recounts the story of her child being in the hospital, at age 19 months, as a result of pneumonia from infection that came during chemotherapy, because her child was born with a rare genetic disorder that predisposed her to Wilms tumor, a malignant cancer of the kidney, during early childhood. Her aunt said to her “Oh my gosh… I know just how you feel! When my little Janet had chicken pox, I was just beside myself she was so sick!”

              Did her cousin have a clue? No. But she was relating my friends experience to the worst she had ever experienced with HER child’s health. That was the only thing she had to draw on. The worst she had known personally.

              Moe – I am grateful for you that being tired and dealing with tantrums and picky eaters and two sporting practices at once is the worse you’ve known. I know it’s bad. I also know if you traded lives with Rob you would experience a whole new level of “the worst” and your current worst would begin to resemble a picnic.

              It’s all about perception. When moms of toddlers say “I haven’t slept more than four hours at night for six months” mothers of newborns are like “wtf is four hours of sleep?” because they haven’t slept four hours since they were eight months pregnant. You think you’ve got it bad with a difficult teen until your friend’s teen commits suicide. Then you’re ready to pay for the difficult days. It’s perception. All of it.

              No one is saying regular isn’t difficult. It is. All lives matter. But there is sometimes a complete disconnect about just how horrific can be. I think that’s pretty much all he’s saying. Namaste.

              • Moe

                And I’m not trying to take away from what Rob and others are doing. But when he is just flat out dismissive of others it’s hard to try and relate. I even said they weren’t the same. But I started out with a question he totally ignored.

                I wasn’t trying to pick a fight. I was asking. Again, saying they weren’t on the same level.

                • Moe, I think you assume that I’m being dismissive because I don’t directly state that all parenting is difficult. I’m not. This is a blog and as such, I talk about special needs parenting. I’m sorry if you feel I’m being dismissive but I’m truly not. At the same time, Kim is absolutely right in how she wisely put it.

                  This isn’t about comparing paper cuts because both cuts hurt. It’s about trying to provide insight as to what my life as a special needs parent is like. While I’m speaking only for myself, in many ways, I’m speaking for many more than just myself.

                  The goal of this post was to to have other parents, like myself, read this and say, I can totally relate to what he’s saying. Someone gets it and I don’t feel so alone…

                  I know that I’ll likely never be able to adequately help the rest of the world to understand just how different special needs parenting is and all the countless struggles we face on a daily basis. That said, if I can reach people who are feeling alone and isolated, maybe by reading my words, they’ll realize that they aren’t as alone as they think they are.

                  When people sorta pick apart my words and try to say that I’m not acknowledging that all parenting is tough, they are missing the entire point.

                  I truly mean no offense by this but those that get it, don’t even have to leave a comment because there’s nothing to say. Those that don’t get it, tend to leave comments and somehow try and critique me.

                  Everything in life is relative and I would never directly compare what I go through to what anyone else goes through because I’m not in their shoes.

                  You asked earlier what kinds of things most parents take for granted. The list is far to long and varies from person to person but off the top of my head:

                  1) Getting your kids to simply wear clothes.
                  2) Not having to micromanage your child’s environment, just to limit the and .
                  3) Speaking of meltdowns, they are not the same thing as a tantrum and shouldn’t be compared..
                  4) While your child may be a picky eater, mine will literally starve themselves if their meal doesn’t look right, if one item touches another on their plate or if it’s offensive in some other way.
                  5) Your Kids may sneak out with their friends and that’s dangerous but at least they have friends to sneak out with.
                  6) Your child may back talk or be disrespectful but mine can’t even speak or tell me how he feels.
                  7) while it’s always terrible to see a child who’s ill it’s not the same as seeing your childs brain stop working correctly and they almost die as a result of their body not maintaining blood pressure, body temp or heart rate.
                  8) In most cases, you can go to your child’s teacher conferences and work out any issues you may have with your child’s education. We have to go to IEP meetings and fight for everything our child needs.
                  9) While you’re watching your child score a goal, hit a home run or even just ride the bench, we are in countless therapies just so our kids can walk, speak, tie their own shoes or even chew their own food.
                  10) In most cases, your child will grow up, leave the nest and build a life of their own. We lie awake at night praying to outlive our children because when we die, there will be know one to take care of them..

                  Please understand that when I say “you” I mean that figuratively and not you personally. Also, the many things I mentioned are things that many parents I know, live with on a daily basis. I’ve personally experienced most of these things myself but it’s just examples of things that special needs parents have to deal with that other parents take for granted…

                  • Melissa

                    Rob all i can say is you are doing an amazing job and yes i totally get it…i have 2 children but only my son is in the process of being assessed for ,which in itself is frustrating because we are struggling to get some help without a diagnosis. He starts kindergarten next year and im so thankful that we do have a government funded place called ECIS-early childhood intervention services and they are able to help with teacher support etc for now and next year. My son also has issues and yes would rather starve than eat something his senses can’t handle and he struggles with keeping his iron levels up as he won’t eat any meat except processed hamburgers or sausages and i need to physically feed him most times to get vegetables with iron into him so that he is not totally reliant on supplements. So i take my hat off to you Rob as i struggle with 1 special needs child and you are doing wonderful to be doing that with 3 ☺ thank you so much for putting forth all your thoughts and feelings.

                    • You’re welcome.. I’m familiar with some of the struggles your is facing and I know how tough it can be. Follow your heart and trust your instincts.. It sounds like you’re doing an awesome job…. ☺

              • Thank you for finding the words I couldn’t. Very well said .. ☺

  • dotdash

    What if the job you are trying to do is just too difficult? What if it is really just too much work, too much stress, too much pain for any one person to handle? I know you are doing it, so in some sense it is survivable, but you are chronically depressed, sleep-deprived, stressed out, anxious. If this were a job causing this, everyone in your life would tell you to quit. Because it’s your kids, you can’t quit, of course. But how long can you keep going? Now you’ve got an invalid wife again. It’s really a miracle you can get up in the morning. I don’t know that there is an answer here, but at various times in my life it has helped me to realize that burdens can be heavy enough to be basically incompatible with healthy human life. For most people these periods are short, but for you, I really worry.

    • dotdash

      Sorry, that comment doesn’t read the way I meant it. I meant to say that your job really is hard, maybe too hard. I respect you for going at it every day and mustering the energy necessary to go ahead. And also, I do worry about you and I hope things will get easier.

      • Dot,

        Thank You so much for caring. Yes, my job is hard and finding the energy sometimes is not easy. Having said that, it’s entirely worth it and I’ll be just fine. As I slowly begin to financially stabilize, we can make improvements to our lives that make this gs safer, less stressful and more efficient.

        I don’t expect this to really get easier but I do believe that I’ll continue up to find the strength to move forward.

        Learning from my many mistakes only makes me stronger. Please don’t worry… ☺

  • Amy Diane Leigh

    People don’t understand. Like the food thing. People tell me – tell him eat what you put in front him or don’t eat anything. He will choose not to eat. He would choose not to eat for days. He wouldn’t eat icecream for years because it was too cold. He only just started not counting his bites. Not eating his food until it was mush and then chewing some more. To me, that is a small victory. I live in texas the answer – even from one dr i had years ago is whoop his ass – all the quirks eccentricities and will be gone. won’t dress in the morning because he’s busy just standing there staring? waking at one am …wanting to go outside in the middle of the night – have to be awake to EVERY sound…every little thing…