“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.
Related Read: 12 Myths About Developmental Delays
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.
Disgusting? Yes.
Reality. Absolutely.
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 time?
Nope.
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?
Related Read: The Diagnosis We Never Wanted
Me time?
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.
Related Read: He Said I Should Euthanize My Child
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.
Because, remember????
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?
How to Homeschool your Child with Special Needs | Natural Beach Living
Day to Day Life Parenting a Child with Reactive Attachment Disorder | Every Star is Different
Life with Trauma ~ Living in the shadows | STEAM Powered Family
Reality Bites: Autism and Daily Life | My Home Truths
A Day in the Life of a Special Needs Mom| The Chaos and The Clutter
A Day in the Life: A Blogging Mom and Her Special Needs Kids | B-Inspired Mama
Failing My Son and the Routines He Can’t Explain | This Outnumbered Mama
Everyday Accommodations & Strategies for Kids with Hyperlexia | And Next Comes L
The Importance of Visual Schedules for Non-Verbal Autistic Children | Kori at Home
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Aubree says
This is so beautiful. My son has autism and SPD, so I understand, to a small extent, what you are feeling. It is SO HARD, and yet we do it. Thank you for sharing!
Christi says
I TOTALLY understand!!! I have an adopted daughter with severe anxiety (reactive attachment disorder) and SPD. I homeschool my biological 13 yr old son. our daughter is in MDO 4days a week so I can homeschool, and so my son has “some” of me, because when she’s home, every eye is on her. She has run out of the house, gotten into our cars, climbed fences, etc. just a few unmonitored minutes can be life changing. Last night, we were up for 2 hours because she was scared. We even bought her a dog (working on getting the dog registered as a emotional support dog). She still cried out for me. We are in counseling (I say we because all but my husband are seeing therapists!). We belong to a moms behavior network on FB (lots of great info) and we’ve seen some improvement, but it’s baby steps!!
Recently, over Christmas break (MDO closed for 2 weeks) I had a friend ask if she could help. I said, “yes! If you could let her come play with you for an hour or two, that would be amazing!” She agreed, but never followed through. Our babysitters have been ran off by our daughter because she functions in her fight or flight brain when we aren’t with her, and she beat them up and ran away. All family lives out of state. We’ve lost close friends due to our circumstances. So, we do it alone most of the time. Not complaining either, but agreeing with you!! My one guilty pleasure? COFFEE!!!
Cheryl Air says
Hi, totally empathise with you. My daughter is 9 years old with ADHD, ASD with PDA, DCD and an eye squint. We are now in the 3rd school , I have moved her to a school specifically with autistic training and she’s getting better support and enjoying much more than previous schools.
Have you tried getting a phone without s SIM card that she can just play games in/watch you tube etc.. that’s what I do and stops all the tantrums.? Just a thought.
I feel like sometimes not matter what I do it will be wrong, it I get blue she wants red, if get cold drink she’ll want warm. I do feel it’s getting better now she’s older but every day is hard work and you never know what you are going to get! Plus I am a single mum, so only one of me to do everything. I’ve got lots of health issues too but she has no empathy for me when I’m in pain! She just expects me to carry on regardless.
Anyway just want to show youand ithers in the sane situation, my support and letting you know you are not alone. Take Care and lots of hugs xxx
Deanna says
Thank you so much for sharing! You are not alone either!
Lea says
I have 6 kids but no special needs and this is very helpful to me. I am super empathetic and love to help people but never would have had the courage to just show up like you just described. Thank you so much for showing us how we can support all you amazing women! And men too.
Hapai Leathers says
I have a quadriplegic spacity cerebral palsy 9 year old Grandson with 24/7 care I totally understand how you feel. Every single second minute they seem to need attention at all times no matter what and that was Burns you out.
Nicole says
I feel the same way, our baby has cerebral palsy shes 2yrs old
We are foster parents but can relate she was up 2am til 4:45am and again at 7am its 11:20am she just went down for a nap wont be long though maybe have time to eat or clean
Thank you for this post
Deanna says
Thank you for sharing and for fostering that precious girl!
CJEH says
It took almost *10 years* of fighting, and being treated as sub standard parents by agencies, before we could get our daughter into the group home with trained staff she had *needed* since she was 4 years old. The way the USA treats families of disabled children is appalling.
Exhauzted says
I am so glad you wrote this. I needed to read it today. My daughter is special needs but not medical, psychiatric. On top of needing to keep her safe and hopefully (but never actually) emotionally calm, there is the judgment and the blame from others. I am constantly dealing with the school, the social workers (as I have been reported to child and family services so many times I don’t even react anymore).As if I don’t blame myself enough and wonder what, if anything, I could have done to prevent her depression, anxiety, emotional regulation disorder and ODD. This too is exhausting and due to her escalations, knives, anything sharp, medications including Tylenol must be kept locked and hidden. I have lost friends, community, parent connections. I just really need to know some days that I’m not alone and that it’s ok to sometimes have negative responses to what I deal with. So once again, thank you for sharing.
Hanging On says
My special needs daughter is an adult now and I am as exhausted as ever (and older!) She is high-functioning and can take care of lots of her needs–that she is aware of. Our lives still revolve around her, we still walk on eggshells and now she wants some kind of an adult life that she is not able to manage on her own. She’s beautiful and friendly and men are drawn to her. Most recognize fairly early, her inappropriate behaviors, her boundary issues, her inability to control her impulses, understand actions and consequences, and her need for constant supervision. The creeps and predators don’t care and we have had to get the law involved more than once. While her violent melt downs have all but stopped and our need for police, emergency rooms and psychiatric facilities is rare, she is still not able to process emotions or stimulus, which means she still directs her anger (which every emotion turns into) at us much of the time. We keep her busy and engaged and involved, which means, as a couple, we have no life. We feel like abused activity directors. But the alternative is much worse. We dream of a day where we can have a conversation, a bed time, a thought that doesn’t revolve around our daughter. Heaven knows, if it looks like we might be successful at this, her radar goes off and she puts a quick end to any moment of peace like an atomic bomb. We have felt isolated for years and as things got worse as she got older, we were too tired to TALK with others, much less ask for help. Some friends tried, but it’s so hard for them to know where to even begin. Most days were like digging out of an avalanche with a beach shovel. But there is another side to all of this . . . Our beautiful daughter is bright and funny and artistic and creative. Despite the ravages of her RAD, we somehow manage to keep a relationship going where she feels safe and loved. Despite her learning deficiencies, she graduated from high school (with lots of pushing and pulling from me) and will attend college soon. Despite her ability to grasp social skills, she persists. She had a terrible, traumatic beginning and I shudder to think what her life would be like had she not gone into foster care. And despite MY many days of anger, frustration, sorrow and self-pity (I have had some doozies!), I thank God for her every day. She is our youngest of five girls (all adopted through foster care) and we ALL adore her. And when I’m having a tough day, I just look back on how far she/we have come. You know what? It is SO MUCH better! I hope the same for all of you!
Nikky says
I totally get this I have 3 adopted children all with very different additional needs genetic environmental and mental health ,I feel this way ,but for me it’s cake .
I can’t do it all .I’m not doing it all .I am honest and tell people how it is and in the last year have said out loud we need help and people ignore or just question it especially are church that we served so diligently for 8 years that we ended up having to leave from hurt . This is is much harder than I ever imagined thank you for your post it nice to know we are not alone xxx
Lauren says
Thank you, and then thank you a few more times. Two of my 3 kids were diagnosed with PANDAS a little over 2 years ago- but after almost 5 years of doctors and even my own husband not believing there was anything medical going on and it was “ all in my head”. My oldest never began eating real food and would turn every meal into a torturous experience. He also never slept. Husband compared it to being in a POW camp. He would wake up and trash the house or just continually wake us up or go wake the young ones. It took my oldest developing syndenhams chorea (movement disorder) before anyone took me seriously. He was since diagnosed with RF, PANDAS and ODD. Second son is still wetting the bed at 7 when he has a flare. Insurance covers nothing but antibiotics (and other psych meds that aren’t proven to help these kids) for us. They refused (3x) the last hope of IVIG for my oldest from his immunologist. I have lost all trust in 99% of medical professionals after this experience. All of my mom friends have slowly faded away after so many botched play dates from my son controlling the play, raging or throwing 8 year old tantrums over seemingly small transgressions (how dare I only bring applesauce-the only food he eats regularly). My childless friends use me as an example as why they never want kids. Therapy helps, but every member of my family needs it and it’s typically out of pocket for the “good” ones. This has been the most isolating experience of my life… and to make it even more difficult- I’m intolerant to coffee 😭