Please leave her a comment, even if you have nothing really to say, just so that she knows she's not alone. Thanks!
As I write this, I haven't showered, and I've spent the last 2 1/2 hours now in varying stages of trying to get my son to take a nap.
He doesn't nap every day now, which is fine; however, he's still wildly unpredictable in terms of whether or not his "signs of readiness" for a nap will result in 3 hours of fighting a nap to no avail, conking out almost immediately, or something in between where he puts up a good fight for a few hours and then passes out.
Of course, when he does nap, it's glorious and I get the precious hour or so to myself that every fiber of my being seems to be screaming out for, and I do my damndest to enjoy it.
Bedtimes and naptimes are, obviously, completely correlated, and it's always a tradeoff. If we do get him to nap, I can recharge in the afternoon, but he'll stay up so late that any hope of doing anything productive or of quality in the evening is pretty much gone.
But, the unpredictability of it all, combined with the stress and monotony of the rest of the daily details has pushed me--a self-described calm, composed, and difficult to rattle person--to the point where I don't think I even recognize myself anymore.
When my son started showing signs of autism a bit after age 2, it was terrifying. When his pediatrician casually told us "yep, he's probably on the autism spectrum" a few months later, my heart shattered into a thousand little pieces. I still have not recovered in the year since his declaration, despite doing all the "right things", like getting involved in Early Intervention services, getting a formal diagnosis, starting various therapies, etc..
And even though right now, I'm making the best of being an unemployed post-graduate (i.e. a Stay-At-Home-Mom, but not really by choice), I struggle with how very little of my own life is not dictated by the whims and needs of this mysterious, challenging, and yet desperately loveable little boy.
I find myself still bitterly clinging to the me that got left behind without me even knowing it. The me that could (and did) relax easily; the me that felt in control of her life; the me that believed she could be a good parent.
I don't think I'm a bad mom to my son; I'm overall proud of the attention and energy I give him. But it comes at a price, and I resent it.
It wouldn't be so damned hard if even the smallest little pleasures in life weren't also robbed from me.
I can tolerate not going to fancy restaurants, or going 10-12 hours without a "break. I can tolerate my nice things getting ruined, getting pinched and bruised and screamed at. I can tolerate a lot of the things that come with this.
But I miss being able to read the paper for 20 minutes while relaxing at a coffee shop. When I try to emulate something similar, it almost always ends with a screaming preschooler and me processing a whole host of emotions of self-loathing ("why did I even think this might be a good idea?"), embarrassment ("those other patrons probably think I'm a horrible mother"), pity for my son ("he doesn't understand what's going on...it's not his fault he's having a hard time"), regret ("I never should have come here"), resentment ("if my kid was normal things wouldn't be so damn hard"), and fear ("will I EVER get to go back to anything resembling the way things were?").
I mourn for the person I am no longer. I miss the me that never yelled, never raised her voice, never lost her temper, let alone basic composure. I miss the me that felt confident in my ability to handle lifes challenges; to figure out the solutions, and keep plodding along in a forward trajectory.
I know I can't expect my friends or family to understand how I feel...I know my husband doesn't even really get it. Not that he doesn't feel stressed in his own right, but I do get envious in a total non-rational way about how he gets to leave the house every day and escape the restrictions of caring for our son.
I feel very mixed feelings about the fact that I'm looking forward to working full time so I can justify paying half my salary to hire someone else to watch my son. Right or wrong, I think working would be easier than this.
I'm not looking for anything other than to put out my own thoughts in a space I can hope is without judgment. I spent the vast majority of my time censoring my inner monologue to my loved ones because I don't want to be ungrateful of the overall blessing that is my son. I do love him. And I do love EVERY part of him. And my life could be so much worse; I could be in a bad marriage (my husband is amazing) or in a bad spot financially (we make ends meet, which is good enough for me!), or in bad health, etc.
But still...
this is just so damn hard.
kibblesbits 65p · 656 weeks ago
Kelly Hafer · 656 weeks ago
The early days, and let's face it - one year in to it is still very early days, are so fucking hard. Hell, most days are hard. But you will see a break in the clouds and light begins to shine through. Hang in there, Mom. And, I hope she finds you, Jillsmo.
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jessicaesquire 65p · 656 weeks ago
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Mama Apples · 656 weeks ago
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Becky · 656 weeks ago
margaret · 656 weeks ago
Your friends and family might not be able to fully understand (mine certainly do not) but there are so many of us out there that do. Believe me.
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jen s* · 656 weeks ago
Lesley · 656 weeks ago
Things will get easier, I promise. My son will be 16 next month..the miles we've come, the things he's taught me, the things I've learned about myself...and wow, the friends I've made that will remain friends forever...it's hard sometimes to even believe we were where you are at this moment. Hang in there, find the precious minutes for yourself...and don't forget to breathe.
Mango's mum · 656 weeks ago
Patty · 656 weeks ago
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Tina · 656 weeks ago
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megs · 656 weeks ago
aquietweek 9p · 656 weeks ago
The hardest thing for me was to let go and get help. I saw wise souls above reccomending respite care. Please do. I went to care.com (any nanny site will do) and looked in the special needs section. The wisdom and advice of our TWO respite workers has helped our family so much. A good case manager should be able to help make care affordable.
I wish you the best. You can connect with me on my blog or FB. I will respect your privacy.
Best Wishes,
Lori D
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The Mommy 86p · 656 weeks ago
smili76 42p · 656 weeks ago
sherilinr · 656 weeks ago
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Silvia · 656 weeks ago
sherilinr · 656 weeks ago
when my daughter (now 10) was a toddler/preschooler, i used to sometimes say that she often acted like a kid who didn't have decent parents. she had no concept of how to act in public or what was appropriate or when. and yet, i'd devoted most of my whole soul and heart into doing everything possible for her.
it pays off over time. they do learn and it does get better.
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@tberry65 · 656 weeks ago
Angela F · 656 weeks ago
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Karin · 656 weeks ago
"Kare Bear" here. Since Jill was kind enough to invite me to take a peek at this little community over here, I thought I'd stop in and say hello, and also THANK YOU for all your kind and encouraging words.
This was a snapshot of a moment during an especially hair-pulling afternoon with my son. Even though it's not how I feel right now, I think it's good to remind myself sometimes of why I feel tired or why when I sometimes catch myself going "where did the time go?" or "why haven't I gotten anything productive done?" I can remember the reason, ha ha =).
I've felt very lost and overwhelmed lately, and a lot of that has nothing to do with my son. A lot of being unemployed when it's not really by choice means that so many things are uncertain and inter-related. I'm hoping to land a job soon and that will change a lot of things for me. But when big things in life are uncertain, it makes taking the little things in stride a lot harder!
Many of you mentioned respite care, and frankly...I have no idea how to even begin. Another couple of redditors have given me some big compilations of information, which I'll be taking my time to go over in detail over the next few days. I am just not even sure where to start. Money is super tight and so I don't think I can really pay anyone out of pocket to come relieve me. I also think we make just enough to disqualify us for most of the income-based grants or services. FYI, I'm in Oregon (USA).
My son starts his first day of Head Start (free through my local public schools!) this coming Wednesday. One of the things driving me bonkers was that I recently lost a lot of weight (about 50 lbs!) over the last year, and ever since I finished school and become a 100% SAHM, I've had an absolutely terrible time keeping my exercise habits (I started running in September 2011). I've gained a few lbs and this combined with everything else was totally freaking me out. Not to mention that running was about one of the only healthy stress relief methods I can rely on. Then my treadmill broke, which meant I couldn't get exercise unless my husband was almost home...which meant basically I wasn't exercising ever. Not good.
Anyway, he'll be going to head start 2 days a week for 3 hours. I am so excited to have some time to myself to look forward to again! It's not much, but it's more than I was getting before!!! And after a few weeks of trying to find $$ in the budget to buy a replacement part for the broken part in my treadmill and then going through hell to repair it, I think I've gotten it back in commission.
So right now I'm cautiously optimistic that having a few small things to look forward to (head start, treadmill), I won't feel so overwhelmed by all the big things.
In a larger context, very few friends of mine have kids and none of them have kids with special needs. Recently, one of my good friends lost a full term baby and another couple friends of ours went through a nasty divorce. I've felt like I had 1) no one that UNDERSTOOD that I could vent to about the struggles of caring for my son, and 2) if I did attempt to vent, I would seem to be ungrateful ("at least your baby is alive"..."at least you have a happy marriage" etc).
Anyways, thanks again. I'll be in touch =)
Bethany · 656 weeks ago
My recent post The Firsts
Bethany · 656 weeks ago
Anyhow, it's easy, and perfectly understandable to us that know and have been there or are still there to get down and feel hopeless.
My recent post The Firsts
Kerri · 656 weeks ago
Wow, I hadn't thought of it that way, but you nailed it. It really sucks sometimes and you try to find the joy but sometimes it just sucks.
As you can tell, you are so not alone! But that doesn't mean you are not entitled to scream once in a while. Not being alone just means there are more of us to lean on.
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Aly London · 655 weeks ago
stephstwogirls 52p · 648 weeks ago
Karin · 644 weeks ago