“You drink a lot of coffee.” Yep. I do. I hear that one little sentence all the time. The problem is most people don’t want to hear the explanation. Daily life with a special needs child is a series of rapid fire, interrogations that a parent can never answer correctly. In fact, special needs moms have been found to have similar levels of stress-hormones to combat soldiers. I’ve never been in combat, but I do know what PTSD from stress feels like. I know people don’t want to hear this. People are busy. People are tired. But most people are not this tired. Most people are not ‘5-cups-of-coffee-just-to-keep-their-eyes-propped-open’ tired. Special needs moms are exhausted all.the.time…..but will never ask for help.
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My youngest daughter has Rett Syndrome and while she doesn’t have many of the debilitating issues that other girls with Rett experience, she does have the sleep disorder among other issues. She, like many other girls with her diagnosis, go through long, regular, frustrating phases of not sleeping.
My daughter can actually go days with just a couple of hours of sleep each night and then crash on the couch at 3pm on a Tuesday when I can’t even think about taking a nap with her. And when she’s awake she travels at the speed of light x 384.
This is a look at 2 minutes of our day:
6am Shiloh decides she is awake for the day. No amount of convincing will keep her in bed. I immediately have to make the choice of whether to try hiding my phone from her or giving it to her just so that I can have a few moments of peace to brew a pot of coffee.
Problem #1: Shiloh is addicted to the phone. A real addiction. If I let her have it at 6am, I will not be able to get it back unless she leaves the house and I can hide it far away. Which means I can’t use my phone.
Problem #2: If I don’t let her have the phone, meltdowns will start at 6:01. Not whiny tantrums that are manipulative and can be turned off. Wild, screaming, throwing dangerous object meltdowns that she can’t stop without being restrained.
Which choice would you make after a night’s sleep that involved filling a sippy cup 8 times and changing 4 diapers?
What about after 5 years of those nights?
And now I realize that I didn’t change her fast enough and while I was making the decision about the phone, she leaked through the diaper onto the bed that I was still laying on and now I have pee-soaked clothes.
6:02am She gets the phone. Because now I need to get dressed, strip the sheets, start a load of laundry (that will be forgotten until 10 minutes before I want to go to bed…), somehow turn on the water for the coffee and I can’t do all of that with a meltdown brewing.
I’m faced with the next choice.
And the next.
And the next.
I’m tired already.
The day continues like this. A constant barrage of choices, very serious ones with real consequences. All.day.long.
Quiet is terrifying to me. One day last week, I went upstairs to check a work message on my phone. Gone 3 minutes. Came back to the living room where she was supposed to be. Nowhere to be found. I sent all the kids searching for her. Upstairs, downstairs, neighbors.
I got the thought to check our locked van.
And she was there. 95 degrees outside and she was in the van with my purse, the van keys and her baby doll. (It’s happened three times since.) The last time she ran inside crying, “hot, van, hot”.
Am I a neglectful mother? Absolutely not.
But sometimes I need to pee.
Or walk to a different room.
Or I assume that she is with an older sister that I left her with.
I’m constantly assessing where she is, who is watching her, is she flooding the kitchen?
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Not unless you count my five-minute shower after she gets in the school van, before I need to start school with my other kids and do some work.
In fact, the main reason I chose to send her to a school (4 half-days a week) is because we couldn’t manage homeschool for the other three girls with her in the house.
I hate that.
I hate that I had to choose between my children. I hate that I still do everyday.
I hate that my other three daughters feel ignored when Shiloh has bad days or weeks or months that require 24/7 attention.
Life is just choices. One after the other. No breaks. No pauses. No attempts to catch a breath.
Planning ahead is a mirage on the horizon that disappears as I draw near.
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I’m often asked if she would qualify for “help”. You know, like a nanny or respite care or something.
I’m going to be blunt. When my husband lost his job last year and I was the only one bringing in income we didn’t qualify for help. None. No state insurance. No county disability program. Nothing. All “needs” based, but we made too much money. Couldn’t pay the bills, but we had too much money.
Now that we’re both working….. no, just, no.
We can’t even convince the insurance company that incontinence is a medical issue…
That conversation is usually followed up with “I don’t know how you do it all!”
Coffee, people. It’s the coffee. 5 cups a day and I’m almost human.
And that is what I really want to talk about. No, not coffee. The statement.
The statement assumes that I am doing it all. That somehow, with a child who cannot be left alone for 5 seconds, who has regular meltdowns at home and in public, needs to be held to fall asleep, to stay asleep, to be kept company when she can’t sleep, and demands to sit on my lap anytime I try to put my feet up for two seconds…. that somehow I am ‘doing it all’.
My floors haven’t been mopped in a month. I think.
I only washed my clothes this week because I didn’t have anything clean to wear.
I don’t remember the last time I washed the kids’ sheets.
I drink coffee at 9:53pm because I have a deadline I have to meet and will be up for hours working, even though I know that she will wake up the moment I start to fall asleep.
I make insane choices, like do I let her play outside for hours when it is 95˚F knowing she won’t play in the water or buy extra locks for the doors and force her to stay inside because her body doesn’t understand hot and cold?
I forget everything. I have a calendar, a to-do list, a whiteboard, reminders on my computer and I still forget things.
I can recite Shiloh’s entire medical history for you though.
My daughter has Rett, another kid has cerebral palsy, another kid has Down’s Syndrome, another has ________.
These families are not “doing it all”. The parents are tired. The siblings are tired.
Not just tired, but exhausted.
Like “I don’t know how I can face the next three minutes-exhausted.”
I’m not whining. And neither are they.
We won’t tell you.
We won’t tell you all our struggles. We won’t tell you how tired we really are. We’ll probably even tell we’re “Okay.”
Not because we are embarrassed or ashamed. But because we know you are busy. So very busy.
But can I ask you one thing? While you are going about your busy life….. could you bring me an iced coffee and sit five minutes with me and let me know that you’ve got my back? Change a diaper or two? Help clean the bathroom that I haven’t scrubbed since…. and maybe, just maybe give me a few minutes to breathe?
What will you do to help a special needs family today?
What about tomorrow?
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