You Might Be An Autism Parent If This Post Makes Total Sense 

I got everything I needed to get done this morning, done. That’s pretty awesome.

That being said, it’s one of those days where I am just so beat, I ended up having to take a nap. It may seem like taking a nap is more of a choice and I guess in a way it is but for an like myself, it’s not that simple.

I had reached a point where I was simply no longer going to be able to function. It’s hard to understand and I don’t mean any offense to regular parents out there because all is tough.

So often, Autism parents are tasked with having to function on levels that regular parents rarely or ever even have to and we do so with little or no . I’m not talking the odd night where you can’t sleep. I’m talking long term, chronic sleep deprivation.

This is the kind of sleep deprivation that can have major impacts on your physical and , not to mentions ones ability to even function.

Every is different but this isn’t some grand secret. This is a well known issue that impacts many, if not most of the parents in the world.

That’s a bit of Autism 101…

As for my original point, I had reached a state where I just couldn’t stay awake any longer and I ended up having to take a nap. I was feeling woozy and even a bit nauseous. This life just takes its toll and I’ve been at it for 15 years now.

After a two hour nap, I’m feeling a little better because I have replenished some of my reserve and while I’m grateful, I know it’s not going to get me far.

That’s the thing I think the world at large doesn’t quite understand.

Sleep for an Autism parent is like replenishing the fumes in the gas tank of a car that’s already only running on fumes. Raising a child with Autism simply requires more than what limited amounts of sleep can ever replenish.


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51 Comments on "You Might Be An Autism Parent If This Post Makes Total Sense "

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Rob Gorski
Member

Welcome back. I see you’ve chosen a new screen name again.

Rob Gorski
Member

Welcome back. I see you’ve chosen a new screen name again.

Rob Gorski
Member
It’s not that I don’t like the question, it’s the person asking. It’s from someone who’s been banned for creating multiple accounts to leave comments with. The comments were all mean spirited in nature. That’s why… No offense Braden but the kind of exhaustion referring to is mostly limited to Autism or Special Needs parents. Any therapist can tell you that and speaking to other parents like myself or even organizations that represent this community, this is pretty common knowledge. These are simply facts and are in no way meant to belittle or in validate what you or other parents… Read more »
Jimmy Rock
Member
Maybe I shouldn’t make too big of a thing over this, but like this individual who is bothering you, I’m not too fond of the combat veteran/ autism parent stress level comparison. Yes, I know that there was a study 6 or 7 years ago that said something to effect that autism parents typically display a low level of a certain hormone which is an indicator of stress on the same level as a combat veteran. I just think there are better ways to explain stress levels of parenting an autistic child as opposed to a neurotypical child. I happen… Read more »
Rob Gorski
Member

I didn’t have a chance to read your entire comment but I just want to say that you’re totally fine. I get what your saying but I personally like the comparison because it helps to make a point.

No one’s saying it’s the same kind of but that it’s having the same impact on the individual.

Anyway, I hope things are okay on your end… ☺

Kim Gebhardt
Member
Good morning, Rob. I would like to add my name to those who dislike the comparison to combat veterans, and I don’t feel that it is helping you make any points. After I saw you mention it a few times, I found and read the study you mention; it was barely a study. It was a small group of women who were interviewed over an 8 day period and had their cortisol levels checked twice. That is really not much of a study to me. The other issue I have is that I think it takes away from the stress… Read more »
Rob Gorski
Member

We’ll have to agree to disagree but I respect your opinion. As for Moe/Zoe, everything her approach is deceitful. Multiple accounts so she can leave different comments. Creates a new account when she’s banned. It’s like she’s obsessed with this blog and as the owner of said blog, I reserve the right to remove her.

That said, you’re right about bringing traffic but that’s the only positive thing she brings to the table.

Rob Gorski
Member

I also forgot to wish you a good morning as well.. ☺

Alyssa Rogers Williams
Member

I agree.

Jimmy Rock
Member
Thanks Rob – all is OK here… I understand why you use the study to explain your stress levels but I just don’t think it’s the best way for you to describe it, particularly to those who are not in the proverbial autism trenches with you. It’s not going to get your point across as well as simply giving examples, as you often do so well, of the hyper- vigilant parenting that autism requires you to undertake, the additional time and effort that must be expended, etc. that parents of neurotypical kids just don’t experience. Either way, I get it.
Rob Gorski
Member

I guess I try to use it to help people wrap their heads around the extraordinary levels of stress that parents live with.

There’s really no other scale that can measure stress in these types of parenting situations.

I know people are taking this personally but is simply in a different universe than typical parenting resides in.

It’s not that parents in general don’t feel stressed out but the stress is different. Everything is relative..

Jimmy Rock
Member
That’s just it – I really don’t imagine that the combat veteran study really helps anyone not experiencing it understand. And there’s no reason to try to “measure” or quantify stress. As soon as you start doing that, you’re going to piss people off because it comes across like you are trying to compare stress levels. Just use specific examples about your every day experience (i.e. you can’t even send teenager Gavin to the rest room in a public place without concern that he’ll disappear) about things hat most parents can take for granted (you can’t even assume that your… Read more »
Jimmy Rock
Member

uniformed = uninformed

Rob Gorski
Member
It’s not that I don’t like the question, it’s the person asking. It’s from someone who’s been banned for creating multiple accounts to leave comments with. The comments were all mean spirited in nature. That’s why… No offense Braden but the kind of exhaustion referring to is mostly limited to Autism or Special Needs parents. Any therapist can tell you that and speaking to other parents like myself or even organizations that represent this community, this is pretty common knowledge. These are simply facts and are in no way meant to belittle or in validate what you or other parents… Read more »
Jimmy Rock
Member
Maybe I shouldn’t make too big of a thing over this, but like this individual who is bothering you, I’m not too fond of the combat veteran/ autism parent stress level comparison. Yes, I know that there was a study 6 or 7 years ago that said something to effect that autism parents typically display a low level of a certain hormone which is an indicator of stress on the same level as a combat veteran. I just think there are better ways to explain stress levels of parenting an autistic child as opposed to a neurotypical child. I happen… Read more »
Rob Gorski
Member

I didn’t have a chance to read your entire comment but I just want to say that you’re totally fine. I get what your saying but I personally like the comparison because it helps to make a point.

No one’s saying it’s the same kind of but that it’s having the same impact on the individual.

Anyway, I hope things are okay on your end… ☺

Rob Gorski
Member

I’ll answer this even though this user has been banned for trolling several times under several different usernames.

I would think that a who works full time wouldn’t have anything negative to say about me taking a nap when I need to. Many parents I’ve spoken with look at work as something of a break.

Other Autism parents generally understand and show something known as compassion to other in similar circumstance.

Rob Gorski
Member

I’ll answer this even though this user has been banned for trolling several times under several different usernames.

I would think that a who works full time wouldn’t have anything negative to say about me taking a nap when I need to. Many parents I’ve spoken with look at work as something of a break.

Other Autism parents generally understand and show something known as compassion to other in similar circumstance.

Rob Gorski
Member
I don’t know how else to get this across to you. You’re not welcome here anymore. You have been banned several times for trolling and you simply change your username. I feel sorry for you because you have to do this in order to feel better about yourself. For the last time, please go away. You have burnt every bridge and your comments are not welcome. To anyone else reading this, I don’t take banning someone lightly. This person has a long history of being an internet troll and they have multiple accounts so they can comment under different usernames.… Read more »
Leaving now
Member
Before I go, let me say this. I had two user names, Moe and Zoe. Zoe happened by accident it was a typo and I liked Zoe better. I NEVER created an account only ever posted as a guest. As for the ban, well if I were actually ever banned how can I still post? You say you have my IP address and you are super techy, but here I am. I’m not a troll, I bring up conversations no one else does, and you don’t like them period. You don’t like being called out. So, in closing, you win,… Read more »
Sophie Wegat
Member

I tend to agree with this. Perhaps it’s just me but I find you more negative since came back…

Sophie Wegat
Member

Did you just delete their comment???

Rob Gorski
Member

Yes I did. They have been banned more times than I can remember and continue to create new accounts to leave their comments. This isn’t censorship, it’s enforcing my decision to remove someone who has continuously abused their right to have their comments be heard.

As the owner of this site, it’s my right to remove someone if I feel it’s necessary. It’s only happened 3 times in 8 years.

Alyssa Rogers Williams
Member
I was cleaning old bookmarks and saw this blog I don’t frequent anymore and probably no one will read this since this is so old, but that is patently untrue. I was a supporter whose comment was summarily deleted (even sent you money) and you deleted a comment that was topical, rational and dead on when you inexplicably took Lizze back . It was done with the flimsiest of excuses that it was “to protect the boys”. There are things here they’ll read that’s much worse. I have not and never will be a troll. I suggested services, pathways to… Read more »
Rob Gorski
Member
Alyssa, I’m not sure why we have to rehash the past. The last few years have been very difficult and I’m sorry for having offended you. I know you felt censored but I did what I felt was the right thing to do and at the end of the day, you’re welcome to your opinion but I need to manage this blog as I feel best. As I recall, you were very much against a reconciliation that fine but it’s my life and just so you know, we’re doing great. Life isn’t easy but nothing about Autism parenting is. I… Read more »
Alyssa Rogers Williams
Member

Sorry, just stumbled in and it got my goat a bit, I appreciate your delineating in the other comment in this thread what was going on with you. Thanks for hearing me out, too.

Rob Gorski
Member

No worries and you’re welcome. It’s really nice to hear from. You again..

Sophie Wegat
Member
See I don’t agree “nothing about autism parenting is easy”. We’ve had a big year with diagnosis (ASD but not,going into detail for privacy) but we still manage to have a good life and focus on positives. Sadly like Alyssa I see the same complaints over and over with no perceived effort to make changes. I’ve also stopped visiting as it’s getting old. I completely understand it’s your life, your choices but I see such a negative change since your reconciliation. Maybe you were just putting on the happiness while you were separated but it’s so sad to see all… Read more »
Rob Gorski
Member
Look, I know you weren’t a troll. I’ve been thinking and I’d like to apologize for removing your comment. It’s not something I did lightly but I need you to understand that I was in a place where I was being bombarded with negative comments from certain people who went to great lengths just to leave them. I was fed up and frustrated. You have my sincerest apologies for reacting to your comment the way I did. I know it didn’t come from a bad place. Just remember that I was dealing with something I’d never dealt with before and… Read more »
Alyssa Rogers Williams
Member

Thank you, Rob, that means a lot. I was very hurt you removed it. But thanks for extrapolating a bit more that decision. Everything I’ve posted , even in disagreement has been with your family’s welfare as the basis of that particular opinion.

Rob Gorski
Member

My pleasure… ☺

Me
Member

See that’s the thing. I’m not a troll at all. I speak truth and don’t sugar coat it. I bring another side of the conversation that may not be pleasant but it’s fact. I’ve never said anything that rob hasn’t already said. And I’ve never made twisted anything to fit my ‘agenda’. I simply don’t have an agenda. I offer suggestions as do other people, but he take so it’s as a personal attack because he doesn’t like it.

Rob Gorski
Member

Now this is your third username…. You never offer anything productive and I appreciate everyone who offers well thought out comments. Yo just don’t fit that criteria….

Alyssa Rogers Williams
Member
I was cleaning old bookmarks and saw this blog I don’t frequent anymore and probably no one will read this since this is so old, but that is patently untrue. I was a supporter whose comment was summarily deleted (even sent you money) and you deleted a comment that was topical, rational and dead on when you inexplicably took Lizze back . It was done with the flimsiest of excuses that it was “to protect the boys”. There are things here they’ll read that’s much worse. I have not and never will be a troll. I suggested services, pathways to… Read more »
Rob Gorski
Member
You’re welcome to your opinion but you understand you’re agreeing with the worst troll I’ve had to deal with since I started 8 years ago. She’s making things up to fit her agenda.. I wrote a long response but Disqus chewed it up. You guys are all welcome to your opinions and I respect them but you aren’t living my life and have no idea whether or not I’m being negative or telling it how it is. I’m comfortable being more honest since my family’s been put back together. When Lizze was gone, I was very careful what I said… Read more »
Rob Gorski
Member
I don’t know how else to get this across to you. You’re not welcome here anymore. You have been banned several times for trolling and you simply change your username. I feel sorry for you because you have to do this in order to feel better about yourself. For the last time, please go away. You have burnt every bridge and your comments are not welcome. To anyone else reading this, I don’t take banning someone lightly. This person has a long history of being an internet troll and they have multiple accounts so they can comment under different usernames.… Read more »
RE
Member
Rob, i can totally relate. I had to leave my work because I could not cope with the sleep deprivation and simultaneously function at work. I was working in an international organization that required alertness and commitment. I would sometimes go sleep for ten minutes in my car during work hours when I felt that I was completely dysfunctional. A nap in this scenario is not for relaxation or pleasure. It’s not an option. It’s the climactic breakdown point that your nervous system hits when your energy, sanity, and mental state reach rock bottom as a result of sleep deprivation.… Read more »
Rob Gorski
Member

Thank you so much for chiming in and sharing your experience. I’m torn here because while I’m so grateful you can relate and understand, you can relate and understand, which means you’re going through a great deal.

I wish I some magic words that could makes things easier but please know that you aren’t alone and if there’s ever anything I can do to help, I’m here… ☺

Hoping finds you soon….

Braden
Member
So…you no longer work because of exhaustion? Or are you saying home stress is tougher than work stress? I can understand that…but people need to do both in most circumstances, so walking around tired is a default setting. while I can appreciate special needs parenting is more hands on, it doesn’t mean other parents are not always exhausted either. And this isn’t meant as a comparison of levels, because that is subjective. My original comment was that taking a daily 2-3 hour nap is a luxury not afforded to most parents. Period. I personally have to work. And it’s not… Read more »
Rob Gorski
Member

Braden, this is just something you can’t really understand unless you’re living it. There is a world of difference in most cases anyway, between typical parenting and Autism Parenting.

No one ever said anything about taking a daily 2 or 3 hour nap.

Again, I totally respect your opinion but we’re talking two very different things here…

RE
Member
Rob, i can totally relate. I had to leave my work because I could not cope with the sleep deprivation and simultaneously function at work. I was working in an international organization that required alertness and commitment. I would sometimes go sleep for ten minutes in my car during work hours when I felt that I was completely dysfunctional. A nap in this scenario is not for relaxation or pleasure. It’s not an option. It’s the climactic breakdown point that your nervous system hits when your energy, sanity, and mental state reach rock bottom as a result of sleep deprivation.… Read more »
Rob Gorski
Member

Thank you so much for chiming in and sharing your experience. I’m torn here because while I’m so grateful you can relate and understand, you can relate and understand, which means you’re going through a great deal.

I wish I some magic words that could makes things easier but please know that you aren’t alone and if there’s ever anything I can do to help, I’m here… ☺

Hoping finds you soon….

Rob Gorski
Member

I get what you’re say and I thought I said that were talking about two different situations. As for the comment nesting, it is kind of annoying how disqus doesn’t keep things better organized….

Braden
Member
It’s obnoxious that you run for people on Facebook to back up your assertion that you have it worse than I do. Despite posting right here it’s only ‘different’. You have zero idea about what I put up with everyday. Not a clue. so while I might not have to put up with your particular challenges, doesn’t mean we all don’t have them. But circles the wagons and have them all come in and tell you how right you are… Or try and use my legimitate comment on napping being a rarity for most parents as a way to act… Read more »
Rob Gorski
Member

I asked for people to come share their experience. I didn’t ask for backup because it’s not about being right or wrong but rather having more people share their unique experience.

I’m sorry you don’t like that but this isn’t a contest. My goal is to educate and the more voices there are speaking on a particular topic of interest, the more information my readers can absorb.

You read way, way too much into that…

Lesley
Member

I don’t think you can fully understand until you live it. I have 2 autistic boys. And for almost 10 years I’ve survived on 0-2 hours a night, no naps for me, I work full time as a teacher and when I’m not at work I have my boys….. It really is a different level. ….. Good spell recently though thanks to I’m on about 4 hrs …. Broken sleep … Just saying.

Rob Gorski
Member
Lesley, I get it as much I can without actually being in your shoes. I have three kids with Autism and the oldest has very fragile health. I’ve worked since I was 15 years old all the way until our lives reached a point that in order to care for my oldest, I needed to work from home. I have a letter from the Cleveland Clinic stating that Gavin requires my 24/7 care and supervision. I have to perform 2 IVIG infusions on him per week and do everything else one needs to do for kids with Autism. I have… Read more »
mindfulmom
Member

I am hoping this was meant as hyperbole and that people take it as such. If not, this is not healthy for anyone and would place one in such a state of dysfunction that the ability to function productively let alone teach would be severely compromised.
There is a reason when the plane is going down you put your air mask on first then your children’s.

Rob Gorski
Member

You’re right and that’s a lesson and I learned the hard way. We put everything into our kids and completely neglected ourselves. We both fell apart. Having learned from our mistakes, we are making a significant effort to make things better in that department.

Janika Banks
Member
Raising a super hyper ADHD kid with insomnia is like that, too. But I hear you from the other side, I come from auties, I’m #actuallyautistic, and I have very clear memories of parents switching off over me screaming in the night. My mom would even cry with exhaustion while she would rub my legs or my stomach. My dad was neither sweet nor too stern, but since he worked 2 jobs, I caught on fairly soon that it was a big deal if he got up to talk to me. And it was every little thing bugging me, had… Read more »
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