This is meant to help educate the people unfamiliar with the struggles of special needs parenting. I want to give an example of how I have dropped the ball and why it can happen.
Like many other people, I very often find myself getting behind in a great many things. These things range from bills, housework, yard work and bills to emails, writing, more bills and a bit more housework.
I get so stressed out over these things and no matter how hard I try, I just can’t keep my head above water.
As a special needs family, these things hit us really hard and because we are able to absorb fewer things than others, life can begin to spiral out of control. This is when I’m most likely to drop the ball. This is when things can fall through the cracks, even some of the important things.
Does this make me a bad parent? No.
What it does make me is a an overwhelmed parent with dwindling physical and emotional resources.
My guess is that at least some of you reading this can relate.
Because my family life is so…..complex, my options are very limited. In fact, many times my hands are simply tied and I can’t do anything but run around during putting out the fires.
Getting caught up or dare I say, improving our lives is literally like chasing my tail. It’s a pipe dream or at least that’s how it feels.
Forgive me for making this assumption, but I imagine you can get pretty down on yourself for feeling like you should be doing more.
Maybe I’m wrong. Maybe it’s just me.
The truth is, I’m doing everything in my power to make things livable for my family. However, I live with this crushing sense of guilt because whatever I do, isn’t enough. I set this impossibly high standard for myself and can never live up to it. It’s like I set myself up to fail.
As a father, no one on earth is harder on me than I am on myself.
I work from home, not because I want to but because I have to. That requires a huge amount of sacrifice as well as a substantial loss of income. It’s something that has become a necessary evil though and a cross that I must carry.
So many families are in a similar boat. They do everything in their power to help their special needs child and it comes at a cost.
Sometimes that cost is financial. Other times it’s sleep or health related. Heck, this journey has cost us friends and even family.
I know that this may seem like whining to some but all I’m trying to do is relay my personal experience and help those of you going through something similar, to maybe not feel so alone. It would be an added bonus if this helped to provide insight for those out there who are quick to judge a book without know the content of it’s pages.
Hello,
I want to tell you that NO you are not a bad father! And yes you are hard on yourself 🙂 You are allowed to get frustrated, tired, angry, want a break or a vacation (alone) lol, the list goes on and on. As a mother of Special needs children, my daughter being autistic, my son getting ready to be evaluated for Asperger’s syndrome along with myself as well. I completely understand about feeling like no matter what you do it isn’t enough! I even deal with the guilt of because I am on the spectrum as well much of the stress falls on my husband becuase (I) just can’t handle a lot, and as a wife and their Mother I feel that this is unacceptable! I am finally seeking a professional diagnosis because I need it for school (to get help) and because I want everybody to know that it’s true that I am a Aspie! It will be awesome to be able to finally give a name to the part of me that has brought me much heartache, yet many strenghts as well. I want to help others understand my children and me better?! I want people to know that there are many misconceptions and misunderstandings about ASD’s?! I also want people to know that I understand why “we” are seen the way others see us?! There are many things that are believed about “us” that are simply just not true and that is very sad 🙁
I have many people in my life that are not interested in learning about autism/Asperger’s syndrome. This angers me because I don’t understand why they don’t want to understand us better? If they would just read about it they would see that we arn’t really all that different, and it would be less confusing and uncomfortable. But, there isn’t much I can do about those people sadly. All any of us want whether you are “typical” or on the spectrume is to be accepted and understood?! It has to be hard for the parent or spouce of someone who is autistic and whose children are also autistic?!!!! I don’t know how my husband does it? I think he is awesome! He takes care of all 3 of us every single day whether he is tired or not. Whether he really wants to or not.
Please? Please, don’t be hard on yourself?! You are doing the best you can with what you have to give and that is enough!! I want to continue to get the help I need so that I too can learn to cope better, communicate better, and maybe not scare away everbody I meet lol! I tend to talk them to death! I have lived with this all my life…being made fun of and bullied, not being understood and I never knew why. Well now I know why, and I want to learn to do things in a way that is socially accepted not just for my family but also for me!
So, you take care of yourself and keep your chin up! Because like I am seeing it stated on FB AUTISM ISN’T FOR WIMPS!! 🙂
Sincerly, Lisa Bermeo
@Lisa thank you so much for sharing that. It’s crazy because our lives seem so similar. You sound very much like my wife. As an aspie herself, she struggles with many of the same things our boys do.
Your husband does sound awesome.
If there is ever anything I can donor either of you, please let me know.
As a fellow lost and tired mom of 2 special needs children and one who is just demanding (lol) I know what it is like to feel the way you do. Somedays it just seems like no matter what I do, it isn’t good enough. There is still a crapolanche of stuff that I needed to go through and I just didn’t get to it. I am constantly feeling guilty and maybe I am not a good mom, but when the kids show me that they love me just how I am, I know that I am doing a good enough job.
@Brianne Lynn well put. I also love “crapolanche”. Brilliant.
So often when we have a really bad night or meltdown at our house, I berate myself for “failing”. My house is generally a mess and I often find myself facing complaints of “Mom, I don’t have any more clean socks!” I spend hours driving my boys to therapy and medication management appointments- an hour and a half one way- every week. I am currently a full-time college student and am facing trying to find a job. What employer is going to support that kind of schedule? It is incredibly easy to become over-whelmed and under-resourced. You are not alone and we must realize that we were chosen to parent our special needs children because we always find the determination to go on, not everyone could.
I get a lot of wow must be nice to not have to work….by people that have zero idea what I have to do every day….or what I’m dealing with myself. They have zero clue and most don’t want to understand….this includes pretty much my mother and her entire side of the family…
This blog entry puts a voice to my thoughts, substance to my fears and reassures me all at the same time. Thank you, Rob.
Thank you for your honesty and making us feel less alone. I hope these responses remind you that there are a lot of "Lost and Tired" Good Parents out there. Just like you, I am one too!
@CynthiaCorreaMaldonado you are so right. 🙂
I have learned that when I am consistently failing to meet those bars of expectations, I have to examine where I"m putting those bars! Is the location really based in reality or my assumption of what is expected?For example, I read on another post about living out of a laundry hamper–doing that now! We have a personal care assistant to help us with those chores, thank you Good Lord… but even SHE gets behind! We have monthly inspections on cleanliness where I live (drives me crazy every time) and ours for this month was this week. That meant, putting away the clothes took a back seat to making sure the blinds weren't broken, making sure the baseboards were spotless and dustless, etc. The extreme pickiness of the management company kills me! But she does her best–all one can ask for. While I have a PCA, you do not. Neither of us has to live like Martha Stuart because quite frankly, we don't have her staff of 25 taking care of all these issues. We only have ourselves.
So, reexamine where your bars are.. can they realistically be lowered? If so, do so. That will help with that guilt factor!
Well.you can only do what you can do. I had to learn that real quick when I became a single parent/foster parent about 20 years ago. I worked as hard as I could, and was as organized as I could be, given the crazies I lived with, and still. there was always laundry going in one stage or another. My housekeeping was on the fly, on the way to doing something else. I think we survived quite well, but comments from clueless family members over what was not don, e each day still sting. I kept as positive and faithful as I could, everyone was clean, fed, loved, and ready for school on time. All appointments (MANY) were kept. Thank God for my friends, who were a huge support emotionally for me. Did I mention there were 9 kids at the time, the youngest was 2. Many were special needs. They were my life, and I am proud that we all lived thru that crazy time, relatively intact. I KNOW how hopeless your situation can seem while you're in the middle of it, but it really will get better. Once Gavin is settlrd, and Lizzie finds a better pain managment deal, the rest will fall in place. Your blog is, I hope, a good source of virtual support. even tho if we all lived next door, it would be easier yet! Here's my best advice: Take a deep breath, keep calm, and carry on! Do what you can, when you can, and build in time for a little rest now and then! Oh, here's another tip. I did all appointments I could during school hours so as not to be gone after school, I tried to have supper ready quite early. Homework was done while I cleaned up the kitchen, and as much as possible, we stayed home after school. They showered one right after another downstairs so I could monitor, we had clothes picked and ready to go, including socks and shoes, right after supper for the next day, all waiting in the kitchen. You are definitely not a bad parent, just a tired one!
Everything you have voiced is so true. We have lost family & friends, as well. I am self employed & make my own schedule. We haven't taken a vacation or gone out to eat in years. There's no time or money for anything. I'm exhausted, don't sleep & feel ill all the time. Believe me Rob, because I believe you. We are all doing our best, but it's never going to be enough.
Never feeling you have done enough is the autistic in *you* (is it even likely that there is none? I don't THINK so) driving you too hard for your own good. Being "goal orientated" by nature means, in a self employed, work from home context you can get to unconsciously feel driven to achieve *every single thing* in your life before you feel entitled to relax and feel adequate. No way off that treadmill, but you may find it helps to set some very firm boundaries around your work time and space…not for other people, but for YOURSELF so that you know when you have finished for the day.
@GayeDalton TY, Gaye, you and Rob are both on target…. sigh…
You are only human and can only do your best. You might find as the boys get older they can start handling a few of the housework type things and maybe some yard work. Try to find ways to creatively outsource, if you can. You have way too much on your plate. Don't feel bad. Our laundry pileup got so bad the other day we almost had an avalanche…