A sassy, crafty mama bird from Los Angeles
raising a very sweet little girl with Autism
and a new baby boy in the Midwest... and other stuff, too.

Wednesday, April 21, 2010

my darling honey bee

I’ve been thinking. Scary, right? Well, it happens now and then. Who am I kidding? I think and think and think and then I think a little bit more. It’s true. Analyze, over-analyze, lather, rinse, repeat. Here’s what I’m thinking… Oh, and this one’s probably just for the other mommies like me. Sorry normies, you’re just not gonna get this.

I’m beginning to think that hope is overrated. See, part of why I’m so heartbroken all the time and why this is such a struggle for me is because I’m getting mixed messages. Some “pros” (meaning they get paid for this shit) say my bird seems to be high functioning and that I shouldn’t worry so much about her having to live with me forever, or in a (gasp!) group home. Others give me the same crystal ball answer, as in “I don’t have a crystal ball.” Well, then what am I paying you $120, 140, 165 and hour for? For reals! Some even tell me they have a hard time with the Autism diagnosis because my bird is so driven by social interaction. The thing is, she looks really good once you get to know her and not so good in crowds or with new people. In fact, a friend (actually a sister) told me recently that the larger the crowd, the less high functioning her girl looks. Yep, sounds about right. Anyway, when I’m with her and she’s on a good kick, she looks great. I’m talking like, really freaking great. Like, we start thinking that maybe, just maybe we can make it through this. My friend D says that one day Little Bird is going to be all “grown out of these issues” and she’ll say to me, “big deal, mom. So you took me to some classes.” Obv she’ll never be able to belittle the experience since it’s here on the interwebz for all to see. But I digress. The possibility of Little Bird saying something like that to me is my fucking dream. DREAM! When she’s not doing well, like the last 32 days (who’s counting?!), all bets are off and no one around us has any right to hope.

That’s kind of what this is about. It’s about the dream and all that freaking hope I have. I wonder if I didn’t have so much hope, then maybe it would be easy to accept things they way they are. Like, if I could just accept that my kid is NOT going to snap out of this one day, maybe won’t ever be even close to normal, or just “quirky” (I’ve often said I’d gladly take quirky). Maybe if I just realize that yes, she probably will need around the clock support, whether that’s living with me forever (oh, F I hope not) or in some kind of assisted living situation, then I’d be able to get past some of the bullshit insanity and I could just work and fight for getting her to her best place. Because that’s not what I’m doing now. I’m trying to cure her. On paper, I can tell you that “I’m trying to help her reach her maximum potential and I just want her to be the best Little Bird she can be,” but that’s total bullshit. I’m trying to cure her. I want this to go the F away. Now. Today. Or yesterday.

Basically, I’m wondering if accepting it all would be so much easier if I could just get rid of this damn hope! Autism is kind of an effed up diagnosis. There’s no bottom line of how these kids will turn out. Actually, I think Autism today is a lot like Schizophrenia was 40-50 years ago. Everyone with mental retardation and/or mental illness was called Schizophrenic, but that’s not what was going on; they had bipolar, OCD, etc. But they were all lumped together and no one had any idea what to do with any of them, so they just locked ‘em up in homes and institutions and gave up.

I’m always asking people who have worked in the special needs field the same few questions: Have you seen kids like my bird before? Have you seen them grow up and do well? Have you seen kids worse off than my bird make amazing progress and make it/turn out okay?  I’m desperate for hope, so I am basically begging people to give it to me. But, really, do I want it? Do I need it? Wouldn’t it just be easier to give up on the “cure” and just settle for the acceptance?

You know the parents who say, “I just want him/her to be happy?” Well, I’ve always thought they’d given up on the dream (the you-can-cure-your-kid dream). Seems like the easy way to go. I’d like easy. Because what I’m doing is really, really, really hard. On me. On those around me. The deal is, I DO want her to be happy, but I want me to be happy, too. Like, a lot. So, will it make me happier to keep on truckin’ and fighting for her to get to be as close to typical as she can get? Or would I be better off to just give up that dream/hope/whatever you wanna call it and just work towards acceptance that the dream isn’t in the cards for me and I should instead “just want her to be happy?”

**please click on the link in the lyrics to hear this song. It's so so so beautiful.


Heather said...

you put my exact thoughts into words...i always struggle to keep on working for that "cure" or do I just give up on the "cure" so I don't continually get let down....sigh

Dani G said...

Thanks for saying that, Heather. Sometimes I feel really vulnerable putting my feeling so OUT there. I'm glad I'm not alone.

My name is Erin. said...

Sometimes I wonder if we're doing ENOUGH. And the answer is no. We're not. But we're doing what we can. We provide a good home and a good life for our kids, but we don't push ourselves to the point of losing ourselves in the process.

I'm not looking for a cure. I hope for one, but I'm not looking for it. I'll do what I can to support the community. Raise money, but mostly raise awareness. You made the comparison to schizophrenia actually being OCD, Bipolar, etc. With conversation and raising awareness, the stigma surrounding those "illnesses" aren't so bad. Maybe life will be easier for our girls someday if the greater community is educated about Autism. That's what I'm working toward.

Abby life will be wonderful if she is surrounded by people who love her and care for her well-being, just the way she is. Even when she annoys the shit out of you! That's where I'm at. And it's a pretty easy place to be... most days.

Arlene said...

Dani, you are def. not alone. This is a struggle for all moms like us who are fighting to make sure our kids get a shot at a "normal" life. I have come to realize this the same way you have, doing a lot of soul searching. I know it is a lot harder for me and my family because of all this hope vs. acceptance thing and just like you said it'd be so much easier, but I'm just not ready yet because it does feel like giving up and to me he deserves so much more, even if it takes away my happinnes.

My new mantra is: I believe in miracles. I keep repeating that to myself over and over again and I really HOPE I get to see it.

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