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!
Comments
Stacey S.
Hartley,
Thank you for this post! I needed it. I see I’m not alone in needing respite. I wish everyone else say that to be a better parent of a child with SPD I need a break/respite. I tend not to ask too because I don’t want to be told no you don’t need a break, which has happened a lot! And I don’t consider the kids going to school my “break”. Thanks again!
Katie
Thank you for sharing and being so honest. I read your post with tears streaming down my face because I realize I still struggle with the fact of admitting I have a special needs child. I can relate to EVERY word and feeling written…it is ME. I’ve often wondered what am I doing wrong that makes my job so exhausting. I too wanted desperately to be a SAHM and fortunately was blessed to do so….but feel guilt when all I want to do is run away. I still schedule random playdates with friends because I’m scared to be “cut off” from society…but at what cost? I can’t even enjoy myself b/c I’m too busy trying to play interference with preveting meldowns while making sure my other food allergy toddler doesn’t put anything in his mouth that can harm him. I feel so alone most of the time….today I don’t – thank you.
Joanne
Hartley, I swear sometimes we have the same brain!! I was just driving down the road today taking my 3yr old PDD/non-verbal/sensory seeker to preschool (on a day when I have to get him early because of school closing early) and thinking…why don’t some people get it? Why is my world so hard sometimes….when just passing the site of wal-mart makes my 3 yrd old scream in fear (it’s on the way to school!)? My head began to spin and I thought of writing a blog about it….and there you go–you beat me to it! Yeah–that precious hour of school I lost today was rough! And schools out next week for him! UGH! There goes my “respite”!! I appreciate your post! Now I must go prepare for my only 2 days of “respite” I have left!! In between therapy!! And the sensory 6 yr old–that get’s home 2 hrs early tomorrow!!! Thanks Hartley!!
Nicole
Hartley,
I would SO love to meet you someday. As I was reading this I kept saying to myself “I could have written this” because it really describes my life/day (although you have a better sense of humor). I too am now able to have guilt-free respite time because I come home a better mom.
Dee
OMG, u sum it up brilliantly <3
Ty xx
Christine
Hey I am the one with SPD (SSSS/Misophonia) and I love this post. The Mary Poppin’s thing had me rolling. I still need breaks just like you, and I have all boys.. If I don’t get breaks, I feel like it is the end of the world all the time.
Thanks for writing this!
Missy
Wow. I feel like I could have written this post myself. Thank you for sharing.
Susan S.
Amen Hartley! You said it- and feel free to say it as many times as needed. It took me years to recognize that it takes way more energy to parent my “high spirited” son, than if he were neuro typical.
And when my son cries about having to deal with going to school, and begs me to home school him, all I can think of is losing the precious “me time”- and that home schooling will never happen in this house. We butt heads enough as it is, just trying to get his reading done and worksheets finished. So, I educate his teachers, advocate for him, educate and advocate some more.
You are amazing. Keep up the awesome work.