by Hartley, Hartley’s Life With 3 Boys
I have been a special needs mom now for nearly 10 years. That sounds much more impressive than it is mostly because when my oldest was young, I didn’t believe I was a special needs mom, let alone have the guts to say it. The only thing I really would admit to was that parenting my son was challenging.
Ok not just challenging, but demanding, and unusually exhausting. Which made me feel like an utter failure. I remember having conversations with my husband where I was in tears saying I needed help with everything from the kids to the housework, where I tried to explain how I could be so overwhelmed after a day at home ‘just’ taking care of the kids and running errands. He never understood why I wasn’t giving Mary Poppins a run for her money and reminded me often that it was ME who wanted to be a stay at home mom. He was right - I did want to be a SAHM - but I never expected it to be so unbelievably hard, and I sure didn’t expect to be so bad at it.
I watched friends and neighbors parent their kids and it seemed like it was effortless for them. Packing up their toddlers and babies and heading to grab lunch with their friends at a restaurant, or heading over to watch the city parade on a whim, or strapping their little ones into a double stroller and hitting the mall to do some shoe shopping. How did they manage that?! Back then I didn’t really understand how incredibly different my life was from theirs. I hadn’t adopted the term ’special needs’ for my boys, or me and I sure didn’t think about respite. Perhaps I was even opposed to it. That somehow my need for a break only confirmed how much I sucked at parenting.
Fast forward a few years, add two more boys to the mix and a handful of diagnostic acronyms, and the picture was a tad clearer: I am a special needs mom.
And with that term came permission for me to acknowledge how much time and energy went into all of the logistics of having a special needs child(ren), not to mention the emotional worry and constant planning for their future that sneaks into your conscious thoughts (alongside the awareness that the future is completely out of your control) and the daily grind of everything from making peanut butter sandwiches with only creamy Jiff, on white bread, with the crusts cut off and cut into four perfect rectangles (or be forced to throw it away and start over) or going through social stories and preparing impromptu visual schedules just to make an unplanned trip to the grocery store. Why wouldn’t I be exhausted? Exhaustion should’ve been a given. Which means respite should’ve been too.
Parenting a child that has special needs requires you to be ‘on’ every day - all day. This is not for pansies - this is no meet-your-girlfriends-at-the-park-for-coffee type of parenting. This is 100% emotionally, mentally, and physically demanding of everything you have, every minute of every day and it never lets up. Like I said, exhaustion is a given, and respite should be too.
My kids are difficult. Don’t get me wrong, I love my boys and wouldn’t trade them for anything, but the truth is, most days, I need a break. Some time when I am not calling the doctor, or filling out another assessment form, or running to the pharmacy, or planning what to cook, or washing the ‘right’ clothes for morning, or picking up Legos, or whatever. And other days? Other days I think running away to Mexico is a good idea, because maybe they won’t find me and my wine-serving taco truck on the beach and drag me home.
Years ago I felt guilty for wanting a break. Not anymore. I still get exhausted, overwhelmed and worn out because I am parenting in a high-demand, insanely busy world, where my ‘bosses’ are three small boys who could not have higher expectations of me. But now I know Mary Poppins has got nothing on me.
So long as I get my respite time, and lots of it. It is a requirement of my sanity and my ability to perform my job. I have to find time to regroup, unwind, de-stress and generally NOT have to be ‘on’.
And after 10 years of this intense parenting stuff, I have learned that needing respite time doesn’t mean I am bad at parenting, it means I am GOOD at it.
You are too.
This was originally published on the SPD Foundation’s Blog – head over there are read the other amazing posts from great SPD moms and dads!
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Hartley Steiner lives in the Seattle area with her three sons. She is the award winning author of the SPD Children’s book This is Gabriel Making Sense of School with a 2nd Edition to be released April 2012, and Sensational Journeys (available now at http://www.fhautism.com) as well as the founder of the SPD Blogger Network (www.spdbloggernetwork.com). She is a contributing writer for the SPD Foundation’s blog, S.I. Focus Magazine and Autism Spectrum Quarterly, among dozens of other online websites and blogs. You can find her chronicling the never ending chaos that is her life on the blog Hartley’s Life With 3 Boys (www.hartleysboys.com) and on Twitter as @ParentingSPD. When she isn’t writing, or dealing with a meltdown, she enjoys spending time in the company of other adults preferably with good food and even better wine.
Getting ready to share this post…..yes, respite is a requirement…..thank you for the great reminder!!!
Loved this one…a very good reminder…one I need to remember!
Yes! We recently found respite, and it’s done wonders for our whole family. I can’t stress enough how good it is even if it’s small snippets here and there.
Love this post! Thank you for giving words to the 24/7 role and licence to take a deserved break to do the job well.
“How did they manage that!?”. I asked myself that for years, wondered at the amazing ease of other people’s parenting. Coffee dates with toddlers happy to stare at their Mom’s face as entertainment and comfort. Can you imagine?
I have only been at this “special needs” parenting stuff for a little over 2.5 years because I adopted my two older children. They did not come with dx and everything blindsided me. I still feel guilty using respite. I feel like it shows I am a poor parent and selfish. I make myself use it sometimes for everyone’s sanity because without it, things would get really bad, but even though it might be respite for my child, it isn’t respite for me because I feel so guilty that I have her there or because I still have another child that I have to care for that has special needs but doesn’t receive respite. Even when my respite worker generously takes her as well for me, I spend my time doing all the stuff I have had to put off while my kids are around or I spend it internally berating myself for putting them in respite. I am having a hard time getting used to this special needs parenting thing that took me by surprise and turned my world upside down. Please, don’t get me wrong. I wouldn’t trade my girls for the world and I love them to death. I just want to be the best parent to them and not want them to feel that I want to get away from them when I put them in respite. I don’t know…guess I am rambling. I don’t know exactly how to express what I am feeling, but I really identify with this post.
I understand where you are coming from completely. My best ‘been there done that’ advice is to accept that being burnt out is a sign of working hard on something for too long with out a break. Needing respite is a perfect way to tell that you’ve been going going going going. This is true not just for parents, but for siblings too. We all need to destress and walk away for a bit (or a long while). Give yourself permission to do so – and by all means STOP feeling guilty for it! You’re a good mom – don’t overthink it. Hang in there! Hartley
Amen, Hartley! Well said. This is just one of the many terrifically valuable pieces of advice I have received from you over the years. You are just so right. I think I need to print this quote, “I have learned that needing respite time doesn’t mean I am bad at parenting, it means I am GOOD at it.” and post it on my fridge, mirror, dashboard, etc.