A brutally honest post: How #Autism parenting has impacted me personally

In my previous post, I explained a bit about where I’m at as a writer/blogger.  This is the very first post on my journey to rekindle my passion for writing and sharing our story. 

I figured the best way to begin was to share how I’m feeling about my life and raising three boys on the Autism Spectrum.

For most of the day, I’ve been thinking about everything that’s going on in our lives.  I’ve got three boys with Autism, one of which has very fragile health and is otherwise a medical mystery. My wife of a decade is chronically ill and is very limited in her current ability to function.

It’s way more complicated than that but that’s the jest of it. 

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If I said that I was overwhelmed by everything, that wouldn’t be very accurate.  You see, I’m so far beyond overwhelmed that if I turn around, I can’t even see the line anymore. 

Absolutely everything is a battle and it’s exhausting.

I can’t even cook a meal without having to accommodate multiple needs and that translates into cooking several different meals, often more than once, just so everyone can eat.  I used to actually love cooking but now I loathe even thinking about it.

This is the first year that all the boys are in school at the same time. While I’m sad because they’re growing up, this was finally a time that Lizze and I would be able to recoup and get back on our feet. 

I remember talking to our family psychologist and sharing how much we were going to be able to get done now that the boys are in school during the day. I had all these plans and expectations of what life with no kids during the day would be like. 

At the same time, I also remember her cautioning me not to set my expectations too high because Lizze and I have been through so much over the last decade that this was not going to be an easy fix. 

As much as I hate to admit it, she was absolutely right. 

The boys have been in school for going on two months now and I still can’t find my footing.  I don’t have a routine outside of taking the boys to and from school each day. 

It’s like I’m so completely drained of anything that even remotely resembles energy, that I just can’t seem to get anything done.  This is evidenced by the mounting piles of laundry and dirty dishes that are threatening mutiny.

Supposedly, you can never make up for lost sleep. I’m so sleep deprived that even though I know that I can’t get caught up on missed sleep, that’s not stopping my body from diligently trying anyway.

I’m also prone to these moments of clarity, where I can step back and view the big picture. It’s these moments of clarity that remind me of just how much I have to do and how little progress I’ve made.  These little mini epiphanies only serve to reinforce the feelings of failure and like the final nail in my coffin, guilt sets in.

Most people just have no idea what living like this does to a person, especially over an extended period of time. 

I love my kids.  I would die for them in a heartbeat but at the same time, I swear to God that raising them is going to kill me.  Does that make sense? Anyone understand what I mean?

When raising a special needs child, you can be pulled in a million different directions, all at the same time.  It’s nearly impossible to live in the present because you are constantly worried about the future and rightfully so.  When you are an Autism parent, the future is pretty goddamn scary. 

In many cases, you could spend all day everyday, simply trying to meet the very basic, physical and emotional needs of your child. In my experience, there’s almost no time for anything else.

Unfortunately, the world doesn’t recognize this added responsibility and still expects the exact same from you, as it does anyone else.  Whether that’s fair or not is debatable, but it certainly can make the challenging almost impossible.  I know that at least some of you reading this can relate. 

Imagine all of this but multiply it by three.  Then add in a chronically ill parent and you will find yourself standing in my shoes. 

Please don’t think I’m complaining about my life because I’m not.  This is about providing insight and not about sympathy.  I love my family and have done and will continue to do, everything I possibly can to improve their lives and meet their needs.

Having said that, it would be pretty naive to believe that all of this doesn’t eventually take its toll on a person.

This site is managed almost exclusively from my Samsung Galaxy Note 3. Please forgive any typos as auto-correct HATES me. 😉



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Lost and Tired

JenCharb Thank you.  That’s a really good point.  Thank you for saying this and sharing your thoughts.

JenCharb

Rob,
I have never gone through anything like what you are going through. But when my  life does challenge me, I know that the expectation of “when this happens I will have time/be organized/get my stuff together” isn’t met, it is almost more devastating than the proceeding time period where you didn’t expect so much of yourself. It has also been my experience that, once you give yourself the time you need, the dishes, laundry and catching up don’t feel so hard. Take care of yourself first. If you go down, your family will have much larger problems that a dirty house and too much laundry. And I hope that blogging gives you something you need because I think your posts are giving the world something it needs.

The Autism Bubble

I absolutely relate to this. I said to my husband today that I feel like I spend my life working my backside off but never achieving anything, just running on the same treadmill of endless caring and half done tasks at home. Most days I can deal with that, but when things are particularly tough it just sucks. Thank you for sharing so honestly. I don’t have any words of wisdom, but you are definitely not alone.

Becky Rogers Wiren

I’m so sorry for all that you all go through. I have a 25 yr old son with Asperger’s syndrome and an 18 yr old son with fibromyalgia. It is hard, but it sounds like your life is even harder, with three disabled sons. My husband can work and make decent money but is near retirement. I have fibro too and work part time. It is such a challenge to have to, every day, fight one’s way through these challenges. I haven’t read all your posts but you are not alone! Be kind to your self, maybe you need this time to rest and get your energy back. Sending good thoughts and prayers your way. We’re on your side!

Lost and Tired

I appreciate it

Carrollynn Henshaw

Frankly, I am delighted to read the truth about what being an autism parent is all about. It is brutally harsh. With no end in sight. No finish line. No light at the end of the tunnel.
I get it.

Debra Patrizi

I feel very much the same way. I feel drained. I feel tired, so tired I have been falling asleep instantly wherever I am! I feel dissatisfied because my needs are never considered, I feel scared because I'm a single mum and I wonder how I could ever meet someone, then I also realise I think these things all day long and that has a huge impact. So I sit down and I asked myself what do I want, what do I need to do to get it and I'm going to fight like hell because this is my life and no one else will live my life, no one can change things for me to give me happiness it's all up to me! As I start working on my actions it's not easy and I have good days and bad, but I still need to go on tomorrow so I do and will but with a plan for happiness. I hope you can find good in everyday

Lost and Tired

rjones22 you know, I really appreciate you saying that.  Not many people understand.

rjones22

Rob, I thought about that too, even though I didnt know the therapist said it. The man that you are with a list of things to get done and all kids in school, you thought Wow I have a plan and time. We know how plans go. You are right there are poeple out here that either are or feel like you do but know that it does not diminish that it is happening to you. You definitely need sleep. i wish I lived your way and your laundry would be done (my kids say when I start washing comfortors that I must really be stressed because I must have washed everything else and must be really stressed) weird I no it is a stress reliever. but I am not there so that does you no good. sleep and don’t feel guilty. do the bare minimum which you probably think you are but are not and get some more sleep. feel free to tell me to stuff my opinion anytime. but drop those kids off, do the bare bare minimum and get some sleep. keep in mind that with the time about to change probably affects you being tired to

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