Thursday, April 29, 2010

Dentists and Docs, Autism, No Show, No Go

So the message on my voice mail went something like this: "Hi there, Kim. This is Sandy from Dr. X's office. I've noticed that from your records that it's been awhile since you've been in for a cleaning. In fact, it's been three years. Are you with another dentist? If so, let me know and I'll stop calling. If not, we'd really like to see you...."


And that's how it goes. No dentist for three years (yes, gross I know and I am surprised that I don't look that the poor person in the picture above). No physicals in a little over two years. No mammogram in two years. Can't remember the last eye exam (early 2000's?) and the "womanly" exam, maybe a few years back (I think but can't remember). I was supposed to get an MRI on my back (missed the appointment). Had to cancel with an acupuncturist three times (can't remember why I booked an acupuncturist in the first place). This is me: Autism Mom who misses and struggles with appointments. And mightily.

Here's the rub: I have insurance coverage. I can actually go and take care of myself. I also have caregivers, now and again, that can manage my PDD son (however, this tends to be spontaneous and frankly, if I get an "out of jail" free card, I certainly don't want to be sitting in a dental chair having my teeth scraped).

How do you solve this problem?

I mean, when I can secure a caregiver, or attempt to book an appointment during school hours, my worry list comes out. Here it is:

Will my child throw such a tremendous fit, that I won't be able to leave?

Will that child refuse to go with the caregiver I've selected? Then the fit.

Will the child cause such an uproar at school that the school will call wanting me to come get him?

Will I be so stressed out that I won't remember the appointment even though I've received reminder calls and texts and that I wrote it down on the calendar?

And, my friends, all four of these things have happened to me, regretfully. A lot.

There was a day were I used to take care of those things. Yes! My son is eleven now, but we never got a diagnosis until eight, and then things really got flared up at age nine. But before that, I could go and do (unless my only laziness or selfishness got in the way, but that's ME that sucks, not autism that sucks).

So, I've declared May APPOINTMENT MONTH (and unofficially Autism PARENT Awareness month)! I am planning even as I write!

Of course, advice, tips, and tricks, well, they are always welcome. Needed. Okay, help! How do the rest of you get this stuff done?

Kim Thompson is the blogger/moderator/founder of Gritty City Woman (a mash up of all things gritty and womanly) and is a contributing blogger for In Your Neighborhood with The Tacoma News Tribune newspaper.

Wednesday, April 28, 2010

Do you like Autism Sucks?

Look, we have a Facebook page, could you go and Like it so we get more exposure? As you know, I do this for the community, and not really much else, but I want more parents to know they have a place.

Help me to do that.

Go here: Autism Sucks Facebook page

Tina is the creator and head chick in charge around here at Autism Sucks. If you want to write, just ask! Her personal blog is Send Chocolate Now, because when you have kids with autism, life is survivable, but it takes chocolate.

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Tuesday, April 27, 2010


1. a. The fact of being responsible for the commission of an offense.
b. Law The fact of having been found to have violated a criminal law; legal culpability.

c. Responsibility for a mistake or error.

2. a. Remorseful awareness of having done something wrong.

b. Self-reproach for supposed inadequacy or wrongdoing.

And then there is Mother's GUILT. An altogether far more powerful and irrational emotion. Mother's Guilt means we take on every let down and disappointment in our children's lives as our own. Mother's Guilt (MG) amplifies our feelings of inadequacy and makes us question our judgement. Mother's Guilt is responsible for our self recrimination and our feelings of blame and well, guilt, for our children's issues.

I doubt there is a mother alive who has not questioned herself or uttered those words to herself: "Did I do something to cause this?"

And as strong as we feel at times, there will always be times when the old MG kicks back in and we worry about our choices, our family unit, and especially our different kids.

I am drowning in the sea of Mother's Guilt at the moment. With Boy 1 hitting the terrifying section of the ASD rollercoaster track known as puberty we are facing a whole new set of challenges previously unseen. With me hitting peri-menopause Mother's Guilt takes on a whole new dimension and removes the calm anchor my firstborn relies on during the storms.

Put into the equation a younger Boy 2, only nineteen months behind Boy 1, bearing the brunt of all this emotional turmoil from both directions, plus being chastised at school for things well beyond his control such as arriving late after a horror Boy 1 morning...

And I am drowning in Mother's Guilt

Really should not have read "House Rules" by Jodi Picoult whilst in this vulnerable frame of mind. Put into words all my fears for both my children.

also writes at four other blogs including Meaninless Meandering From a Madmother

Sunday, April 25, 2010

At least there was cake

1006126_58760883 I started reading this blog when I first learned that autism sucks. Which was about 3 months before my son, nicknamed Moe, was finally diagnosed. That was almost a year ago. It still sucks.

This weekend we had my daughter's first birthday party. I couldn't stand the thought of more people invading my home (10 therapists a week is enough, thank you), so we had the party at Gymboree. I thought it would be fun and involve no work. I though that Moe would have a good time too. He's into climbing everything right now so that would be good. And he used to love it there when he was a baby and we had time to do things other than therapy.

Well, guess what? Autism sucks because it is unpredictable. Moe had a major meltdown the moment we stepped in the door. Fortunately, none of the other guests had arrived and he calmed down in a few minutes. He spent his time on the outside, bouncing on the trampoline in the corner or running around the edges with a juice box. Didn't even participate when it was time for bubbles or the parachute. For a while he obsessed over the drinking fountain until he couldn't find anyone to pick him up anymore. He exhausted his grandparents who were kind enough to chase him around the room so my husband and I could spend a little time with our daughter who is going to be one year old and deserved a day all to herself. So we could watch her eat her first bite of cake.

We call her Jelly Belly. She doesn't have a lot of friends of her own. We know a lot of people Moe's age, leftover from the playdates we used to be able to attend. They came, and some of them have baby brothers and sisters now, so they came too. Family and old friends came and there was a nice crowd. But any time the group gets together, I'm reminded of how different he is and we are. I'm reminded how much I love three year olds and how they talk and how they follow each other around the room in packs, looking already like teenagers. I'm reminded of how I've been robbed of that time with my little boy.

I'm reminded of how much autism sucks.

Jen writes about life with a baby girl and an almost three year old son with autism on her personal blog, Anybody Want a Peanut? She also really loves cake, something she and Moe have in common. You can follow her on twitter, @wantapeanut.

Thursday, April 15, 2010

We're in with the In crowd.

Here in Melbourne my son and I attended our first World Autism Awareness Day march, from Autism Victoria through the streets and up to the steps of the State Library, on April 2.

For the first time in a long time I could see a difference in my son as he looked around at the mass of people thronging on the nature strip in Drummond Street, Carlton, awaiting the signal to start marching.

I kept a tentative anchorage for him by lightly rubbing his back now and then, to reassure him I was there if he needed me; at one point he actually turned to reassure me that he was fine, thank you very much.

I looked at him and realised there was an inner glow, a lightness and happiness to him that I had not seen in a long time.
It took a few seconds for me to nut it out but it was so simple; he wasn't the odd man out in a crowd for the first time in years.

How often is it drummed into us parents to assist our kids to integrate with neurotypicals, to have them socialise with them as much as possible to get the old 'monkey see, monkey do' happening with social behaviour, yet somewhere in following the rules we kind of miss the message our kids need to know they aren't the only ones who think, process, talk, walk, just plain are different.

He proudly marched with others, he shared smiles and grins, moving out of the way for mothers with prams, returning waves to strangers who stopped to watch and wave to the marchers but the most compelling, the most empowering thing for him that day was to realise for himself that he was a part of a whole community and not just the novelty Aspie geek kid.

Next week he attends his first Aspie teen social support group and he's almost bursting with excitement to just be another face in the different crowd.
Cos the different crowd rocks.

And it will keep on rocking throughout May as Autism Awareness Month in Australia.

Ro is from Australia; she has a partner on the Spectrum and is the mother of a 13 yr old homeschooled Aspie teen studying at University, both of whom have recently given her permission to blog about their challenges with multiple diagnosis' alongside Autism at Get Over It...I did.

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Wednesday, April 14, 2010

Every day is autism awareness day around here

Autism Awareness month is almost half over, and if you don't already have your autism awareness t-shirt, what the heck are you waiting for?! Yes, I know, if you are like me, you procrastinate. Well, stop it. Yes, I know, we are already aware of autism, but believe it or not, I still run into people who don't know about autism! No, really. I swear. Like the sweet grandma at the grocery store who thought my daughter was just "overtired." So our job is not done, friends. I don't know about you, but I often don't want to have to tell people in so many words about my kids. I let my shirt speak for me. I know, I know, I don't have to tell them anything, but work with me here...

All the cool kids are wearing them… don't you want to be one of the cool kids? Well? Don't you? That there is my son, and he is the coolest of the cool. I didn't plan to have him wear red, it Just Happened. I enjoyed taking the pictures with him. He was a really good sport, as usual. He is used to Momma's bizarre bloggy requests. A t-shirt picture was easy! This is where I got mine…isn't it snazzy? Fits well, and hey, it's red! (yes, I know the "official" color for autism is blue, but I never claimed to like boxes much. Well, that is, unless they are small, blue and velvet and contain jewelry). Barring that, I think the red looks pretty good, don't you?

You know you want one! Go. Now. And just to sweeten the deal (because, after all, I an nothing if not sweet) You can enter the following code for 10% off ANYTHING on the site Custom T-Shirts..but you know what you really want is an autism awareness shirt, right?

just enter the code at check out! sendchoc10

I was not compensated for this post, but I did receive a really cool t-shirt

picture taken with Canon T1i. Edited with Picnik which makes my photos look like a rock star. Or pro level. Or something.

Tina blogs on her personal blog Send Chocolate Now, (and really, she means it, she needs it!) She says motherhood is cheaper than candy and half as sweet.She is also the founder and chief rock climber here at Autism Sucks.
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Wednesday, April 7, 2010

It'll Get Easier?

When the boys were first diagnosed, people kept telling me, “It'll get easier as they get older.” Obviously, those people had never raised autistic boys.

I am a single parent. I have twins, one high functioning and one low functioning. My low functioning son has run me through the gamit – last year we discovered he is an eloper, after jumping the fence and being found on the 91 freeway. He also jumped his grandparent's fence and was found on the Los Alamitos Army reserve Base. Now 13, he is in the middle of adolescence and has discovered masturbation. Yes, this is one topic where there is no help out there, on the internet or from doctors. People don't want to talk about it, but if you have a low functioning child who is not developed enough to ejaculate, he will pee, and pee everywhere. Behavioral therapists tell us to do social stories, which he memorizes but doesn't generalize. You can't take his reinforcer away – it's built in. We try to tell him that shower time is the time he can do that – the kid takes 20 – 30 minute showers now. Lucky kid - I'm lucky if I get 5 minutes. In fact, this morning, while I was taking that 5 minute shower, he did it again and peed all over the floor. The doctor is raising his prozac dosage, but doesn't have hopes that it will calm his behavior – it might make a 50 year old man less interested, but it's doubtful it will have that effect on a 13 year old boy. But we will try, because at this point, we will try anything. He mainly does this at night, when everyone is asleep, so there's no chance at redirecting his behavior. He will play with himself, then pee over the side of the bed, down the wall, and onto the floor. I discovered this when his room began to smell, but I couldn't find anything obvious – his bed is a loft bed against the wall, and there are baskets of toys and things under it. Only when I got down on the floor did I discover that there was a veritable flood of pee, the carpet was soaked beyond ruin, and the hardwood floors underneath were beginning to get moldy.

As they boys get older, I find myself wishing that just for a day, I had typical kids, and if that wasn't possible, wishing that everyone else had low functioning autistic kids, just so they'd really know what I go through.

written by a mom who wishes to remain anonymous, based on subject matter
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Saturday, April 3, 2010

A way to help community member, califmom

One of our authors here, califmom, has been dealing with a difficult family crisis, for those who don't know: her husband has cancer. It's bad. SO MANY have asked how to help Leah and Bob, and this is the first thing we can do:

We can give. I know, I know..the economy. But. Every little bit helps. Can you find any amount? Not going to insult your intelligence to tel you to give up your Starbucks or any other thing. You know what you can afford. Do what you can.

Childhood friends of Leah's aka califmom, have started a fund to help the family with the expenses that come with Bob's illness. Insurance doesn't cover it all, and added expense of eating food out, keeping kids occupied... well it all adds up. So. Here is what we can do (posted from Michelle's facebook account):

Bank of America, Nevada
Account Name: Norling Family
Account #: 501008379041

If you're making a deposit in person, you must have the account number. BofA can not look it up for you, even if you have the account name.

If you would like to handle your donation by mail, please make your check payable to the Norling Family. Remember to write the account number in the memo portion and mail it to:

Michelle Wolfkiel
P.O. Box 193
Minden, NV 89423

She plans to make deposits on Fridays and balance updates will be available on Michelle's facebook account.

From Michelle:

Not going to worry about thank you's right now, but we will make every effort to keep track of everyone's name. Thank you all in advance for your love, prayers, and generous support of Leah, Bob, and their children.

As we celebrate Christ's ultimate sacrifice this Easter weekend, I ask you all to please give until it hurts.

Please feel free to repost this information wherever you think it might do the most good. You should also know this is a non-interest bearing, free checking account and EVERY penny will be available to Leah's family when they need it.

T, who knows you want to help

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Thursday, April 1, 2010

World Autism Awareness Day.

Here in the land of Oz, the sun has risen on World Autism Awareness Day. Also known as Good Friday. A happy Easter to all, and may your awetism filled lives be happy and full of love and joy.

otherwise known as Tanya is an Aussie blogaholic. She has four blogs of her own, but can be mainly found randomly rambling at Meaninless Meandering from a Madmother. A mother of two boys, her oldest son, now 12, has Asperger Syndrome.