Friday, August 26, 2011

Delaware's Wild Ride

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We are really hoping hurricane Irene fizzles out, goes to sea and leaves our area alone. I'm not liking the "good-bye" shots of our coastline we are seeing all over the TV. Couple that with an earthquake-- which wasn't strong here, except we suffer from amplification of earthquake waves, and the whole area is taking THIS storm very seriously.

We've decided to get out of dodge-- or we did before we were advised to. Our family had a plan... it's the rest of my family that didn't. Anyway, we decided enough stress for one month, its time for a mini-get-a-way. The kid is under entirely too much stress and it shows.

So, we are wishing everyone up and down the East Coast good luck while we move to much higher ground. Get prepared and be safe, hug those kiddos tight!

Saturday, August 20, 2011

I'll save you money: Snark Study Review

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I'm going to tell you now that I don't need the $34.95 complete version of this study to tell you what the conclusion is going to be and neither do you. Good news, everybody! We just saved almost $40 by switching to common sense. You can thank me later.

I hope you can guess (or assume) the conclusion of this study, too:

Original Paper

Adaptation to Daily Stress Among Mothers of Children With an Autism Spectrum Disorder: The Role of Daily Positive Affect 

(This is me speaking, not the paper) My neighbor always says that mothers of autistic kids are the most easy going, flexible, patient and calm women she ever encounters as a social worker. She even tells me I have the patience of a saint. Lord knows I try...hmm... who is the Patron Saint of Patience? I need more muscle. See, this paper makes me turn to religion from science! 

Mom's of autistic parents are usually chipper and pro-active (not the acne stuff, but the when it comes to my kid I'll call you before you have to call me stuff). Working with moms of autistic kids is easy-peasy because they listen, they give accurate insight, they weigh options and they act. How come we need a study to say a sunny disposition and ability to deal with daily stressors leads to better outcomes for autistic kids? Doesn't it hold true for all kids? (Back to the paper)



Raising a child with an autism spectrum disorder is a challenging experience (Really?) that can impact maternal well-being (Whodda Thunk it?). Using a daily diary methodology, this study investigates (1) the relationship between stress and negative affect, and (2) the role of daily positive affect as a protective factor in the stress and negative affect relationship. Results from hierarchical linear models revealed that higher levels of stress were associated with decreased negative affect, both within and across days. Daily positive affect buffered the immediate and longer-lasting negative impact of stress on days of low to moderate levels of stress. Implications of the present study are discussed with regard to theoretical models of positive affect, the development of intervention programs, and directions for future research. 

If you don't know what "affect" means in this context is click here. 
I'm gonna borrow from my neighbor here (Thank you, Mrs. Alex, for inspiring me to have more testicular fortitude): No freaking way. You mean tell me, great science people, that mothers who can cope with daily stress AND keep a smile on their face have special needs children who flourish? 
N-freaking-O. W-A-Y.... N-O-freaking-WAY. Really?


Taking my logic one step further (because it's my birthday and I'm too old not to use logic now-- I actually FEEL smarter each hour past midnight) we can assume that mothers who are stressed the hell out and can't see the humor in their kid telling them to piss off-- in their own autistic, special way-- have kids who don't do so hot. Of course, I'm making sweeping assumptions here. I only read the paragraph above and tid bit from TPGA on facebook (and I quote):
"...and this is why we do our best to promote positive role modeling and attitudes. -SR"

Naturally, this paper comes out of a society who vilifies people who take a vacation during stressful times (or at all) and women are doing more today in their roles than they did fifty years ago as mothers. Or at least, it seems like it since there are, er were (economy fail) more two-working  parent households. Remember when the middle class survived on one income? I've only read fifty-thousand articles in the past year on the subject of getting men to do fifty-percent of the house-hold chores in a hetero-partnership where both have full time jobs. You can't pick up a damn magazine without reading about it. So. uh. C'mon now!

What these wonderful scientist people ought to be studying is how to get women in better moods. Really. How about how to make respite, support and stipends more readily available to moms...for, um, I don't know... relaxation time so she isn't wound up as tight as...spring? What do we wind up these days? How about taking some stress off of mom? How about making things like education easier so mom doesn't have to spend her precious energy advocating the for the same basic educational plans year after year after year? How about just making that money for education available cause the doctor and mom said it was necessary? How about doing something revolutionary like working with the mom, instead of against? 

Did we ever stop to think about why on earth a mom wouldn't have a positive outlook? Autism is hard. Being a mom to an autistic kid is hard. Lots of people think they are experts because they watched a ten minute special on the evening news or a talk show, but they don't really get it. Motherhood is hard with regular kids, but damn, autism? It's so hard that fifty years ago, parents would be told send them away forever... "have a do-over kid, folks, the state will care for your kid in this pretty institution you'll hear horror stories about fifty years from now."

How about we stop being all misogynistic about studies?  This abstract might as well read "Mother's who are frigid make their children autistic". It's the same package re-gifted in different words. "Mom's who aren't blowing sunshine out of their bums when everything is a battle outside (and may be inside) their four walls (if they have four walls) don't raise very well-adjusted kids, especially not autistic ones" would be a better title. 

Girls, get your aprons out and iron stuff! Make a casserole. Go bleed in the corner, you poor, fair, misguided sex.

You know what I'd love to see studied? The effect of of easily accessible efficient, proficient medical, educational and social services on maternal stress and autistic children...and junk. Why is it the mothers fault for not having a natural optimistic disposition? I invented something called "The Sunshine Stick" for blue friends, but even I've been a total buzz kill lately. I've been the Anthony Bourdain of motherhood. But damn, if you walked in my shoes, you might have jumped off a tall building already. 

Every single woman who participated in that study-- and you know they had better things to do-- have been degraded by the study's authors, in my humble, yet loud (and feminist) opinion. I have no doubt that the participants were candid about their experiences, like no other demographic would be. Moms of autistic kids have to deal in stone-cold truth everyday. The mothers affect is directly responsible for their child's success. Where's dad in this? Where's the modeling of relationships by parents? By family? By siblings? By the world? C'mon. Don't just blame mom-- that's so fifty years ago. Give her the tools and resources to be better, happier... positive! It's that simple....

But, wait, there's more:

Cause let me tell you-- it isn't my experience with autism or services or doctors or schools or reading these studies that keep me positive. No Sirree. It's my calm, blue ocean. It's a vacation. It's respite. It's a laugh. It's having the skills and support I need to laugh in the vicious, evil, nasty face of daily stress. (OMG, did I pay that bill?? I forgot to put the clothes in the dryer!! Gas is how much??!! Did I defrost some meat?? Do I have Flavor Blasted Goldfish to avoid a bed-time meltdown?!! How do adjust accordingly to this current crisis??!! This. Cannot. Be. Broken.) Sometimes, it's petting the cat. Other times it's talking to my spit-fire neighbor. It's watching stupid television or listening to classical music. It's scrapbooking. It's seeing my kid progress in area when I hadn't expected or had an indicator he would (despite all our effort and hard work). But it is not being left in the cold to take the blame handed out by silly science people. 

Maternal affect and stress is not helped by this study at all. As a matter of fact, this study may have raised my blood pressure and may make me lose sleep. We've lost our way. The success of kids isn't a maternal issue at all. It's a societal issue. Until regular mothers, nay WOMEN are properly supported, us special needs moms are gonna have be judged by our sunny smiles and charming ways. And the width of our Sunshine Sticks. 


Wednesday, August 17, 2011


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It's happened. My family has officially driven me crazy... or crazy enough to go out therapist shopping. Insurance only covers twenty visits per year, so I figure I'd interview potential mental health counselors before letting them charge me and my insurance for actual therapy.

Just how I got to the point of seeking professional help shouldn't be any surprise. Take one Asperger's kid, take one husband recovering surgery and stir in two sisters, each with their own complex set of issues. Once that's simmering, add in the last sister dying of brain cancer. Let that simmer for three months, stirring constantly. Finally, top with crazy and abusive ex-husband vying for attention, and bake in a well lawyered casserole dish for the next year. Serve with thousands upon thousands of dollars.

With your feet, during this process, get some hamsters, some fish and some cats... try to keep them alive. Forget about them liking you because you don't sit still long enough for them, but you will pretend they understand you when you ask "Did I feed you today?".

There are maybe four people in this world I'd trust to do therapy... except two aren't taking clients anymore, one is a complete conflict of interest considering our going for adoption and one isn't technically a therapist (but should be). That leaves the other 30 candidates in the provider handbook.

I feel like a puddle of goo on the floor these days, when I'm not trying to be therapist-mom to the kid, nurse-wife to the hubby and social worker-sister to my sisters. Everyone is so darn negative or obstinate lately that it's actually becoming contagious. I'm normally positive, chipper and "half full, baby" (as my husband always says). Not so much lately. Not when everyone is all "OMFG, it is the end of the world that [insert trivial thing here]!!!" Life is awful. There's not enough. We're out of something. Something broke. You haven't... [insert non-priority action here]. Things were better when... life sucks now because... I could go on and on.

When that's added in with the general stress of daily life, Chiari Man, Aspie Boy, my sister's constant urge to add extra caffeine my coffee, and the trigger of dealing with the ex-husband (even if its second-hand), I find myself having the beginnings of panic attacks. Thankfully, I have the skill set and the support to help keep those at bay. My hubby knows panic attacks. He knows if I say I feel it coming on, I'm serious. And he's afraid that if I break down, he'll be left alone with the whole house and all it's responsibilities.

My parents and in-laws have been excellent supports, too. Both set of parents seem to have this sixth sense when I need to hear something positive. My mom-in-law has the uncanny ability to read me like a book, even over the phone. I have the strange feeling that if I ever did go into full-fledged panic attack mode, she'd call or show up or something. And she'd probably have ice cream, too. I could write an entire post, novel even, about her awesome mom-ness. My mom is great, too, but she's a thousand miles removed from it all. Even still, my parents sent me "tell us if you need us to come down there and take over for a weekend" email the other day. I told them I have to learn to cope on my own, but if I have too much trouble, I send for them.

Yet, there are times like these when we need perspective from the outside. When you are in the trenches, you need to communicate with someone removed from the battlefield so you don't end up digging your way right to the enemy. Someone who can load you up with skills and tools to keep heading in the right direction so you can win war, even if you lose some battles.

When talking about this to my family doctor, she nearly fell of her little doctor's stool while holding back tears of joy when I said, "We are just not born equipped to deal with so much stress and I feel I need extra help". I gathered that she doesn't have many patients ask about emotional and mental health care. I imagine she does a lot of referring, but no one really volunteers for a list of counselors because she was just about speechless.

I need help redefining my boundaries, dealing with a stressful life and re-learning how to react to certain people in certain situations. My skills are rusty, to put it bluntly. And by-god, I need to dedicate some time just for me, all about me, for the sake of me and my family. After all, what good am I to anyone if I'm not getting my needs met? I'm no martyr and I'm no Scarlett O'Hara. I'm just a girl... who wants to keep thriving under pressure and model the behavior appropriate for our current circumstance.

And dammit. I want to stay positive and cheerful. Even if I have to create an army of ninja hamsters to reinforce my personal boundaries.     

Tuesday, August 16, 2011

Sleep- It's cool

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Unless it's hot and then it sucks.

I like to sleep. I don't know why, but sleep has never been an issue for me. The hubby was asked recently by a sleep doctor (I have no idea what they are called, but they do those sleep studies and junk) if his "bed partner" noticed anything unusual about his sleeping habits. The answer was a resounding "no" because if the house fell down around me, I'd sleep through it.

I'd be one of those people totally screwed during a midnight tornado or other terrible disaster that involved waking up. Yet, if my child so much as winces in the middle of the night, my mommy radar alerts me. Thank god for primal instincts.

Lately, I've been ready for bed at 5pm. That's sorta an issue because people get hungry in my house, but lack the ability to really forage for their food. (or so they tell me)

There isn't really a point to this post, except that after my five hour nap, I'm ready for bed again. I'm sure this need for extra sleep is a by-product of stress, because lord knows it just keeps coming. But sleep-- it makes me happy. It makes me able to function. It keeps me nice and even.

So, good night, sweet world. I'm going to bed.

Monday, August 8, 2011

Summer Scrap Page 2

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Here is the second page of yesterdays scrap:

Sunday, August 7, 2011

Summer Scrap

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This page was made with Peppermint Creative's Sunkissed Summer kit. It's a page of my oldest sister, Mette, when she visited the beach. I plan on doing a second page of her, so this is my "start page". Enjoy!!

Saturday, August 6, 2011

The Psychic (or Vampire Crazy Lady)

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See, there's the psychic I was friends with... The hubby and I were actually a member of her paranormal investigative group. We did all sorts of things for them, basically investing time, money and energy into her many causes. I shouldn't say "her" because it was a family affair.

This particular psychic (to the stars, she claims) has three major projects: She charges people for psychic readings, privately, over the phone, email, at parties and events, she publishes (or was publishing, because there hasn't been an issue in a long time) a psychic/wiccan magazine, and does paranormal investigations.

She's a busy lady. When we were friends with her, we helped her. And by help, it always seemed to me that we not provide assistance or do anything along side her, but do it for her. Everything needed to be done immediately because she had deadlines. Yet, when something completed was handed over to her all the sudden the rush, the necessity wore off.

I did mock ups of website for her to improve her business model. She had lackluster sales and being that I was heavy into selling at online venues at the time (which I have been taking a break from since April because of the hubby's health) and with almost 20 years of award winning customer service under my belt, I shared my tips and tricks with her. Her website is out-dated, not user friendly, and basically looks like it's circa. 1995. She did not feel that was a hindrance to her success.

I sent friends to her website and they complained about it. I sent potential advertisers to her page, but never heard back from most of them. When I did, it was the standard "that's not right for my business". Even I didn't want to put out money for advertising in her magazine with her website such a mess. No one would stay on her site long enough to see my ad.

The most embarrassing moment was when the two of us were guests on a popular paranormal internet radio show. She directed listeners to the website to look at evidence from previous investigations. Even the hosts of the show could not get the EVPs to play or so they said. My guess is it just took too long to get the page... or they got lost in the twenty-thousand new spawned tabs and windows.

She uses Facebook, but not a fan page, but a friend page that has a cap on total amount of friends and limits you ability to market your brand. I suggested a fan page, but she wasn't interested. It was a darn shame because people like Aaron Goodwin and Anne Rice have excellent models of fan pages. Anne Rice by far has the most engaging, interactive fan page I've ever seen. She's responded to me personally *swoon*. Aaron Goodwin has not only promoted his television show, but created a lucrative side business with his use of social media. Her time was spent accepting gifts on Facebook, I guess because it's boosted her ego.

None of my suggestions were given a second thought by her, yet my husband could say the exact same thing and it'd be a great idea. You see, she doesn't have a very high opinion of women at all. My husband and I tested this theory all the time with little things. She'd take what he said to heart, not realizing that I told him to say it.

But when it comes to her business, the only person who could ever influence her in those decisions were one of husbands. (She's had twelve). She only seems to wanted to use me as her personal assistant, free of charge. I let her, I ashamed to say. She only wanted to use the hubby to boost her credibility. She has a history of burning through the kindness of friends, sucking them dry like a vampire.

The last command she barked at me was a letter she wished me to type up. She gave me the summary for a reference (because why should she type the letter herself?) of what she wanted said in this letter. She wanted my husband, with the letters behind his name, to sign and deliver it to her. We've given her a letter of reference before, so I was not surprised or unwilling. When I got the email, my jaw dropped to the floor.

I don't know what my husband agreed to exactly, but I'm pretty sure it wasn't that. And if it was, then he did not understand completely thanks to his surgery. (Comprehension is something he has issue with at times) I discussed the outrageous lie of of a reference with him and he agreed that it was not something we wanted to be involved in. I don't want to attract any bad karma, especially since she is even worse with money than we were and has a long track record of either suing landlords or being sued by them. I was not letting her have carte-blanche with my husband's reputation.

I sent her a nice, cordial, but honest reply. Her being a psychic, I assumed that she'd understand that the choice was to prevent bad karma and the tone was kind. I said we could give some other sort of reference, but not that one. I'm not sure she's that good, at least not in emails. Or perhaps selfishness over-ruled any gifts she has because her reply to me spewed venom. You could just feel the evil emanating off the email screen.

And she wonders why bad things keep happening to her?

Reminded me of my ex's crazy rants. She threatened me, my kid, my husband... Oy. She's going to have me deported, dontcha know. I can only hope because I need a vacation and Denmark is a beautiful place filled with my family, so I wouldn't need to pay for a hotel. Ticket to Aalborg, if you would Uncle Sam. (It's too bad I was born in Washington, D.C., huh?) She's going to call someone to punish me for having a homeschooled child with Asperger's Syndrome, too. And she's gonna tell my husband's parents how awful we are (like they don't already know us). She is just gonna get me. Punish me for all my sins against her. Punish me for telling her the truth.

If it were my husband who said any of this, she'd crawl right up his rectum and say "no problem" and leech off of whatever he casts out to her. But I'm a girl, so how dare I not bow down to her?

I was shocked at first, but now I'm flattered and in stitches over this. When I'm 62, I'm gonna wear a big, ugly hat and put spam in people's shopping carts, not on their Facebook feed. I'm gonna sun myself on the beach in some gaudy bathing suit, on a hot pink beach towel. Even if I'm homeless, even if I'm in wheel chair with pink racing stripes and neon yellow flames. I'll pimp our my walker and smile at young kids. I won't go around asking people to lie for me, especially not friends. And I'd be gracious when they refuse such an outrageous favor because I understand that no one owes me anything.

Thursday, August 4, 2011

Look for a new posts soon!

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Things have been awfully busy here. When I'm not refreshing the kid for school, correcting behavior, fixing meals and running between doctors appointments, I've either been scrapping, reading (you know, Chiari & Asperger's) or catching up on emails. Sometimes, I sleep.

There's one really interesting thing that has transpired lately. There seems to be a theme running through my life at the moment, thanks to the powers of the Universe. When these themes manifest over and over again, I take heed. The current theme is the link between gratitude and karma. And boy, do have a lot to post about that with one particular example I find morbidly fascinating. A study in psychology maybe? Extreme narcissism? 

Whatever it is it reinforces the lessons I've learned over the years and makes me thankful for everything I have, and how lucky I am to have my husband alive and well. It reminds me to be grateful for our wonderful support system during our battle with Arnold Chiari (he's a jerk!) and coping with autism.

I haven't decide whether to splay it out as is or just write a piece about it. It was an interesting interaction to say the least. To see it as is would be like watching a train wreck. Or maybe some awful B rated biker chick movie. I need to think about how to portray this story...

In the works are also several more scrap pages and a guest post for Lots to come when I can find more time.