The Burnout that Special Needs Parents Experience
Heather McCain
I think most parents probably feel burnt out at some point while juggling all of the responsibilities that parenthood brings. It seems there is always a never-ending list of things to do, but never quite enough time to get it all done. Parents of special needs children have lists that are a bit longer, but still have only 24 hours in a day.
Our lists include medication administration, regular appointments, multiple forms of therapy, paperwork, unending phone calls, IEP meetings, learning to use and then using medical equipment, and so on. We often need to feed, change, or bathe our children who are well beyond their pre-school years. We need to make sure we don’t run out of the medications that our child’s life depends on, or diapers in a size that can’t be bought in a store and must be purchased from medical supply companies. When we plan outings, we must make sure our destination will be accessible for our child. If you can imagine, I’ve only just put a dent in all the extra things a special needs parent must do, remember, or know.
Our lists include medication administration, regular appointments, multiple forms of therapy, paperwork, unending phone calls, IEP meetings, learning to use and then using medical equipment, and so on. We often need to feed, change, or bathe our children who are well beyond their pre-school years. We need to make sure we don’t run out of the medications that our child’s life depends on, or diapers in a size that can’t be bought in a store and must be purchased from medical supply companies. When we plan outings, we must make sure our destination will be accessible for our child. If you can imagine, I’ve only just put a dent in all the extra things a special needs parent must do, remember, or know.
Before anyone gets the idea that I’m complaining, I want to make sure to be clear that that isn’t what this is about. I’m just sharing experiences. I understand that it can be hard for those who have not lived this life to grasp what our day-to-day routine consists of (I use the word “routine” loosely) so I wanted to try to paint a picture as I’m getting into what this is all about, which is the burnout that special needs parents experience. This is something that I personally experience, and that I hear or see other special needs parents talk about often.
I’m not talking about that exhaustion at the end of a long day.
I don’t mean the needing a cup of coffee or two, or three kind of exhaustion.
I mean that deep down, all the way to your core exhaustion that creeps into your heart and mind, the kind that’s already there when you wake up in the morning.
I’m not talking about that exhaustion at the end of a long day.
I don’t mean the needing a cup of coffee or two, or three kind of exhaustion.
I mean that deep down, all the way to your core exhaustion that creeps into your heart and mind, the kind that’s already there when you wake up in the morning.
It’s when you’re so burnt out that you can’t even bring yourself to open a piece of mail or check your voicemail because you can’t fathom adding one more thing to your list, not even a seemingly tiny task like returning a phone call.
It’s the kind of exhaustion you feel as you wake up to change a diaper and bed sheet in the middle of the night, like you have for the past 9 years. Or 20. Or 42.
It’s letting go of careers and plans.
Its feeling like you have little control over what happens to your child, when you desperately want to protect them.
It’s handling meltdowns like a pro in public and hiding in the bathroom to cry later.
It’s watching monitors until the sun rises, even though you’ve been awake for approximately 29 hours already.
It’s waking up at 4 a.m. to make it to your child’s appointment at the specialty doctor 5 hours away.
Its the heavy guilt of being away from your other children as you sit in the hospital with one, weighing on you like a boulder.
It’s being afraid of the future but learning to live in the moment—Who will take care of my child if something happens to me? What if my child outlives me? What if I outlive my child? Breathe. My child is here with me now. Enjoy this moment.
It’s falling into bed thinking, “how can I keep doing this every day?” Then, getting up the next morning to do it again.
It when our health suffers, mentally and physically. Depression and anxiety are common in parents of special needs children, and lifting a growing child and equipment such as wheelchairs takes a toll on one’s body over the years.
It’s the kind of exhaustion you feel as you wake up to change a diaper and bed sheet in the middle of the night, like you have for the past 9 years. Or 20. Or 42.
It’s letting go of careers and plans.
Its feeling like you have little control over what happens to your child, when you desperately want to protect them.
It’s handling meltdowns like a pro in public and hiding in the bathroom to cry later.
It’s watching monitors until the sun rises, even though you’ve been awake for approximately 29 hours already.
It’s waking up at 4 a.m. to make it to your child’s appointment at the specialty doctor 5 hours away.
Its the heavy guilt of being away from your other children as you sit in the hospital with one, weighing on you like a boulder.
It’s being afraid of the future but learning to live in the moment—Who will take care of my child if something happens to me? What if my child outlives me? What if I outlive my child? Breathe. My child is here with me now. Enjoy this moment.
It’s falling into bed thinking, “how can I keep doing this every day?” Then, getting up the next morning to do it again.
It when our health suffers, mentally and physically. Depression and anxiety are common in parents of special needs children, and lifting a growing child and equipment such as wheelchairs takes a toll on one’s body over the years.
The burnout is real. I’m not telling you about it for pity, I’m simply sharing the reality of many with you. And it has nothing to do with how much we love our children. Trust me, we love them so much that we put their every need above our own. We love them so much that we wouldn’t trade being their parent for the world. Know what else? You will probably never recognize how burnt out we really are on the inside when you see us with our children. That’s because you will see us playing peek-a-boo, or beaming with pride over them, or kissing their soft cheeks over and over just soaking in all the love they offer. You hear the praises we give them and how we gush over every little thing they do. The burnout is real, but so is the unconditional love between us and our children.
You see us in the moments that keep us going, the moments that make all of the hard parts worth every second. But rarely does anyone see us at our most vulnerable, so rarely does anyone notice how burnt out we are.
The next time you see a parent of a special needs child, instead of saying, "I don't know how you do it" (trust me, we're not even quite sure how we do it), or "I couldn't do what you do" (trust me again, you could if it were your child), consider smiling and telling us we are doing a good job. Sometimes, that's all we really need to hear to keep on keeping on.
You see us in the moments that keep us going, the moments that make all of the hard parts worth every second. But rarely does anyone see us at our most vulnerable, so rarely does anyone notice how burnt out we are.
The next time you see a parent of a special needs child, instead of saying, "I don't know how you do it" (trust me, we're not even quite sure how we do it), or "I couldn't do what you do" (trust me again, you could if it were your child), consider smiling and telling us we are doing a good job. Sometimes, that's all we really need to hear to keep on keeping on.
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