xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: The Dive Bar Welcomes: Kare Bear

Saturday, September 1, 2012

The Dive Bar Welcomes: Kare Bear

This post is a little different from the usual Dive Bar post. Usually you guys write your rants and then send it to me for posting, but in this case, this was a post I read in r/autism on reddit. I wrote to the mom who wrote this and asked her if I could post this here because I wanted her to know that she is not alone. I told her that I wanted to help her find some support and if I posted this on my blog, she would get tons of people telling her exactly that. She gave me permission to post this and if you find her on reddit, she didn't use her real name, so she's anonymous there and here.

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.



Comments (29)

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Respite care, STAT. I didn't want it when I first was offered it. Thought what kind of mom does that? Best thing ever for him, and me. Medicaid waiver pays for it. You're not alone, but there IS help out there.
I totally understand. Completely. Especially when people tell me something like how lucky my son is to have me as a parent. I know just how unqualified I am and how much better other people with more patience and understanding could do. I miss so much of that before-life. I totally understand.
My recent post Take a Picture, It’ll Last Longer
Mom, hugs to you! It absolutely does get better. I have an almost 3 year old on the spectrum, and am right where you are. However, I also have a five year old and a ten year old on the spectrum as well. My ten year old was hell on wheels for the first seven years. After age seven, he seemed to get a lot easier. I know that seems like a long way off, but soon you'll be looking back at this time and feel so amazed at how far you BOTH have come.
My recent post You Might Have A Kid With Autism....Part 2
The most amazimg thing about computer land is this instant ,caring, informative, supportive group of bloggers who are in the trenches with their kids who have autism. It is a safe place to fall. Did I mention FUNNY ? It helps sooooo much. If I got specific, you would probably not be able to read ten pages of my helpful hints . But trust me, this is such a good place Welcome.
You are most definitely not alone. If there are only two pieces of advice I can give is 1) ask for help. Ask you husband to give you a few hours a week to go out and do something on your own. Ask your family and/or friends to help. If you can get respite approved, take advantage of it. Getting some time to yourself will help you recharge and be an even better mom. 2) It will get better. It sounds like you are getting your child the services he needs and it will get better, it will get easier. And you will find such joy in all he will be able to accomplish.

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.
My recent post Unfortunate Outfits - Leopard Love
Respite -- however you can get it, via a job, family, friends, local respite program, whatever -- will change your life. Think of what they tell you on an airplane: when the oxygen masks come down, put one on your own face first because if something happens to you, you won't be there to take care of the person next to you. You sound like a good mom, and you will be okay, but please take care of yourself.
You are SO not alone....and this community here will never judge you for feeling the way you do right now.... This is hard, harder than any job you could ever imagine...and as I see you already know, it's a also more rewarding than anything you could imagine. Find a way to get even just 5 minutes when you can, where you can..*show of hands for those of you who have locked yourself in a bathroom for a quiet moment of peace at least once!*

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's avatar

Mango's mum · 656 weeks ago

Honey you are NOT alone. Well, I mean we're not 'right there', we're 'here' - but - we're WITH you and that's what counts. Hugs and love to you doll.
I totally get what you are saying. Totally. There are times I resent my kids so much, it hurts. And then I feel immense guilt. But, as the others have said, it does get better and you are most definitely not alone. I often wish I could find a full time job so I could still be me, separate from my kids, but I just don't know how I'd manage it with my son's autism (he would not do well in a day care situation). Anyway, I hope you get some breaks!
My recent post Aloha Brownies
You are not alone, and your feelings are valid. Ask for help, from your family, your church, and community resources. You need some 'me' time, and there is no guilt in that.
My recent post Time
Hello me from three years ago! I know exactly what you are doing at the moment! I did it too. It does get (relatively) better as they transition into school. If you have luck finding someone who will watch him, will you share? I am currently working as a waitress at a breakfast place because it coincides with my sons school schedual and means that I am off the hook for finding someone who meshes with my son. After getting and loosing one full time job because of care providers not working out, I gave up and moved into something that worked with what we needed. And at least I get to talk to other adults there. Its not stimulating or glamorus, but it pays bills, gets me out of the house, and yes, I DO get to read the paper and have a cup of coffee before work. Been there *hugs* you will make it!
I know where you are. My son is six and the whole time around 2-3 years was especially maddening. One thing that helps me is having family memebers with autism. I can see possible futures and adjust expectations. Could my 79 year old Dad wipe his own butt at six without getting chocolate fingers? Probable not.

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

My recent post Should I Indulge My Asperger Child?
I think that any parent of an autistic child can relate to everything you have written. As a parent of one of these special kiddos, I KNOW I can. Just like everyone else says accept any and all outside help you have available and it DOES get easier. My daughter is now 6 and has been diagnosed for a little over 2 years and I remember the way she was two years ago and it's incredible how far we both have come. Hang in there! I offer up my prayers for you and your family.____Check me out on my blog or FB. I don't claim any wisdom but I'm really good at looking like a fool!
I know this feeling well. My son is 6 now, and in many ways it has gotten easier...but I still have the days where I go through all you describe above-- frustration, anger, embarrassment, guilt, etc. We are human...and this special needs parenting gig can be brutal. Try to find some respite care and get out to do a few little things-- even if it is just grabbing a coffee-- for you...by yourself. Hugs...oh, and the crappy sleep stuff, yeah...I get that too. The respite care will help with that. Try a weighted blanket..that has done wonders for my son.
1 reply · active 656 weeks ago
the weighted blanket is WONDERFUL! i made one for my daughter because i couldn't afford to buy one. it's filled with dry popcorn kernels and she loves it, for sleeping or when she's super stressed out.
My recent post facebook updates that never came to be
You just described me! I can relate with every single thing you said. As the mother of a four year old on the spectrum, all I can tell you is that we have to believe all those mothers of older ASD kids who tell us things DO get better with time. Most probably your own kid is doing a lot better in many aspects, too. You seem to be doing everything right, just hang in there!
oh my gosh, yes! when i complain, my husband will sometimes say, "well, you're the one that wanted kids." as if that means i was ordering up the asperger special. and he's glad for his job, but that doesn't stop him from complaining about it sometimes.
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.
My recent post facebook updates that never came to be
That is a beautiful piece of writing. I feel like you took my heart and wrung out all the feelings deep inside me. I know exactly how you feel.
My recent post Morning Performance
Hi everyone,

"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 =)
I'm totally there with you! I never want to complain because there are a lot of worse things that could be, but some people just don't understand. My son is about to turn 5 years old on September 28th. He was diagnosed two months after he turned 2 years old and we immediately started three types of therapy and then he started school the day after he turned 3 years old. We are now almost 3 years from his diagnosis and his functioning level has wobbled between 9 months and 1.5 years even with 3 years of speech/occupational/physical therapies, 2 years of special education early childhood schools, and for the past 4 months ABA therapy. . . .
My recent post The Firsts
I would recommend respite care, however it depends on where you live and if you can pay for it. In my case, my town doesn't have anywhere that provides it so I would have to have someone I know watch him (HA!). I don't have ANY family that lives close by. All I have is my fiance, who is great, but has his own issues with accepting my son's behavior (he's not my son's biological father). I've had a break for the past 4 months straight because my son is at a temporary ABA residential school, and I am questioning myself for sending him because he's 2 hours away from me and I miss him terribly, and then when I and my fiance do things (like date night) I feel guilty for enjoying myself. It's like you're damned if you do and damned if you don't and at times it feels like it's impossible to keep your head above water.
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
The me that got left behind.

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.

My recent post WOO HOO
Aly London's avatar

Aly London · 655 weeks ago

It doesn't look like it now but it gets better. My brother was diagnosed as autistic when he was 2 in 1985 back when people still thought autism was caused by bad mothers. We had more embarrassing situations in public than I care to think of. He started therapies immediately and my mother pushed the schools and everyone else every step of the way. In 2002 he graduated high school and the school district paid for community college classes until he turned 21. In high school he began working at the library in the small community near our school and continued there for several years. My parents worked with community organizations to set him up with a job at the Fort Worth public library. The city provides his transportation to and from work and he doesn't have to deal with people much while he shelves books. He'll never live on his own and someday I will get guardianship of him but he can take care of himself at home during the day. We miss the "normal" things in life like conversations and personal connections but it's so much better than the days when he would scream and kick on the floor or run into walls.
My husband is amazing too. I don't really have the time or the energy to appreciate that or him though. Like you, I get irritated that he doesn't understand how difficult it really is being at home all day (or even part of it, now she's gone to school!) with a child like this. He accepts it fine, adn tries to help, but most things come down to mummy. It is not easy, but I have to tell you it definitely does get easier as they get older - maybe because we get more used to being on our toes and expecting the worst, so actually it's lovely when the good things do happen, and funnily enough there seem to be more and more of those as you go along. Take lots of deep breaths, and know that it will get better x
I just thought I'd stop in and give a quick update, since actually a surprising amount of things have changed for me since I wrote this post. I made an update over at reddit. Here's the link if you want to read it. http://www.reddit.com/r/autism/comments/13r150/al...

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