The Respite Requirement


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 last week - head over there are read the other amazing posts from great SPD moms and dads!

8 comments:

John and Allie Fields said...

Well said! Now if only all of my friends who are not special needs moms would read this and understand that this is no cake walk. I want a break so bad but there is no respite in sight. I think people are afraid to take care of my little guy =(

Evie, Topher, Ally's Mommy said...

I feel so similar. I always thought being a parent would be so easy, and at first it was. Then my special needs child was born. Everything went down hill fast. I felt like such a failure. Some days I still do. I sit and wonder what the heck did we do all day that I am exhausted, but nothing is done!
menearfamily.blogspot.com

In Real Life said...

Yes! I still feel guilty when I want to take a break, but I know that after I do, I will be re-energized and ready to tackle new challenges.

Sarah Hoffman said...

I'm coming up on ten years of special-needs parenting too, and reading your post I felt like you were writing my story. For the first few years of parenting I didn't know what to call our terrible, exhausting days, and when, after 4 or 5 years, I realized: *we have a special-needs child*, it was as though the clouds parted. It's still painful to watch parents of neurotypical kids go through their days with ease, and I constantly battle the temptation to slip into jealousy and fantasies of what-could-have-been. But when I admit to myself that this is my life, and that that life has a name, and that others live it too, it becomes that much more livable. Thank you for this post.

stark. raving. mad. mommy. said...

Thank you.

Nicolette @ Momnivore's Dilemma said...

Being a parent is tough. Being a special needs parent is like the night before final exams. Every morning, year after year.

I'm only on year 3.

You are good. All jobs have vacations. Special-needs mothers should have a tax write off for an all-expenses paid trip to the destination of their choice.

Accidental Expert said...

I'm going on year 13 and went through many of the same stages you did. I don't think I officially thought of myself as a special needs parent until about 5 years ago. When I finally realized it wasn't my failure as a parent causing my problems, I embraced respite time wholeheartedly.

Becky said...

Step one: accept that it is ok and actually GOOD to have respite. Got that.

Step two: obtain the respite!

We have not moved beyond step two. :-( My son has been approved for and is eligible for 384 respite hours a month. That "30 day wait period to slide onto the grant..." is going on 8 months.

Regardless, God is good. We have come this far and beat the odds not having another mental health hospitalization - despite what they predicted, managing medical with only a handful of medical hospitalizations over the summer and actually growing, showing progress versus regression or stasis!

And for myself, having been a pediatric nurse specialist ... I thought I had it all in the bag when I began this special needs parenting journey. HA! It's an ENTIRELY different ball game when you live it 24/7! :-)