When you’re a special needs parent, there are so many things that constantly come up and inevitably put many of the day to day things on an indefinite hold.
This is something that I really struggle with because my family has so many daily challenges that it seems like everything else in life is always on hold.
I feel perpetually un-accomplished.
We all know that there are only so many hours in a day but it’s a bit more complex for my family and others like mine.
In my case, I’m trying to care for 3 boys with varying degrees of special needs. Some of these needs are sensory, dietary, emotional, physical or some combination of these and more. My wife is chronically ill, essentially disabled and living in constant pain.
Pilots say that any landing you can walk away from is a good landing. I say that any day we physically survive with everyone in tow is a good day.
There’s so much truth in that because at any given moment on any given day, there are a million things balls being juggled. It’s unrealistic to expect that a vast majority of those balls are going to fall and hit the floor.
This happens for many reasons, none of which has to do with lack of trying.
It comes down to priorities.
Throughout the day my priorities can change and change many times. It seems like something always comes up that bumps my current priorities down a few rungs on the ladder.
Before to long, something else comes up and bumps things even further down the ladder.
It’s never ending struggle to juggle all these priorities and as I’ve said many times before, when everything is a priority, nothing really is…
When I walk through my house, I see a sink full of dishes, a basement full of dirty laundry, clean laundry in baskets that need folded, a floor full of toys that need to find their home and a pile bills that I need money to pay..
Every time a truck from the utility companies drives down my street, I cringe. Is today the day they will shut us off?
I set out every single day with the intention of addressing these things and getting the house caught up. The unfortunate and frustrating reality is that almost every single day, something comes up requires my immediate attention. That something is usually related to the various and challenging special needs of my family.
Despite my best efforts, I always seem to wind up well short of my original goal and feeling pretty much completely defeated.
I’ve learned that having expectations in any direction, is a one way trip to disappointment.
Something else I’ve learned is that most people will never understand why things never get done or why I’m always so stressed out and tired..
It’s easy to say that I don’t care what people think but the truth is no matter how little I might care, some part of me always will. This perpetuates a feeling of being a failure, even though I’m giving more than what I have and tending the most important things my family needs….
Special needs parenting is a constant struggle. It’s really easy to judge me, especially is you were to walk through my house on any given day.
I’d love to be more organized and efficient. I’d love to get the laundry done because I hate living out of a basket. Don’t even get me started on the dishes and the stress of not meeting my bills is killing me.
Having said that, much like a car sputtering as it uses up its last drop of gasoline, I’m almost always running on empty due to lack of sleep and completely depleted energy reserves.
I do my best every single day that I wake up. However, almost every single night I go to sleep I feel like my best just wasn’t good enough.
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Most days our best doesn’t even feel anywhere close to good enough…
Keep taking that next step.
Rob, i like going into some one’s messy house because it makes me feel better about my messy house. I feel for you about the utility trucks coming down the road. my fear was always the tow truck coming to get the car. even though the payment wasnt late, it was ingrained in me when i heard a tow truck to look outside and make sure they were not getting my car. I have so much clean laundry piled on my couch i should send you a picture for real. I also agree with you about what a good day looks like. mine is me, my son, and our dog are still alive. Great job done! You are doing your best. that is all we can do. I also understand how you feel if you sit down for a minute then you are guilty you are not up doing the laundry. the guilt doesnt seem to end. great news is we are in America and have access to drs and meds and arnt sitting in the desert with our starving sick kids waiting to get raped any minute or killed. they definitely arent worried about the electtric bill. I am thinking about you and Lizzie all the time
Rob, thanks for sharing your experiences as a fellow sojourner on the path of special needs parenting. I fully respect what you are doing, because I parent only one boy with special needs, whereas you are dealing with three! We parents need support from others who are on the journey, because parents whose kids don’t have the same challenges ours have often judge or misunderstand. And as strong as we each may be mentally, it can be easy to subconciously take on those critical voices, critiquing ourselves, our goals, and our parenting. Thanks for all you do.