xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: January 2012

Tuesday, January 31, 2012

Am I REALLY laughing out loud as much as I claim to be?

If you talk to me on Twitter, have you ever wondered if I'm actually laughing out loud when I say "LOL" ? Well, I've drawn up this handy guide for you to find out! (There's no way this can come back to bite me in the ass later, right? WHAT a good idea this is....)








Monday, January 30, 2012

I win at drunk baking


Adventures in Estrogen


I love to cook. LOVE. IT. I particularly like to make elaborate and complicated things that require many steps. I also like to drink when I do these things. It's just more fun that way!

This weekend I got it into my head that I wanted to make Samoas; the Girl Scout cookie with coconut and chocolate. They're just cookies, right? How hard can that be? (Long time readers may now be remembering what has happened in the past when I have said "how hard can that be?" when baking was involved).

So, I went online and found a recipe. It turned out that there were many, many, MANY steps involved in this particular cookie process, but I like a challenge, so LET'S DO THIS!!!  I went off to the store to buy my ingredients, and while there I also picked up a bottle of $5 champagne, because... well... because it was $5. I have no standards, anyway. Plus it was only $5.

First I had to make the cookies. Then I had to make the caramel. Then I had to toast the coconut. Then I had to mix the coconut and the caramel. Then I had to melt the chocolate. Then I had to put the caramel coconut on the cookies. Then I had to put the chocolate on the cookies. The whole process took about 5 hours and an entire bottle of $5 champagne.

During the process, I posted a few pictures to Twitter, because I enjoy sharing my failures in picture form, and here are what some of my helpful twitter pals had to say about it:



Hubs also helped out with "So you decided to go with the poop theme, did you?"

When all was said and done, they may have looked weird, but they were fucking tasty. Who cares what something looks like, right?? It's what's inside that matters. Here's a picture I drew of Child 2's face after he had eaten one:


Seriously, how can you argue with results like that???????

Anyway here's what an actual Samoa cookie looks like:


.... And here's what MY cookies looked like:






Sunday, January 29, 2012

"All Kids Do That" Part 7: Having surgery

See the tab above for more information about this series.

Today's contributor is the awesome Mom blogger from The Aspie Side of Life. She doesn't have a name, though... I'm to just call her "AspieSide," which I do, but when I do it, I do it in kind of a whisper and with jazz hands. Now you try....

AspieSide.....



This past summer my 14 year old son had to have a tonsillectomy. I had lots of friends and co-workers tell me that it is rough for a teenager but he would be fine. Rough for a teenager? Great, what about an aspie teen with anxiety and ADHD?

I tried my best to tell him everything that would happen at the hospital. He did pretty good overall but apparently forgot to tell him that he would need to change into hospital clothes. Clothing is a big deal to him because of his sensory issues so this caused quite a bit of anxiety. He kept repeating “I don’t care if they get blood on my clothes, I want to wear my clothes.” Once I finally got him to change his clothes he repeatedly asked if my co-worker Jane could draw his blood. This only went on for about an hour.

He was very cooperative with staff and was very polite when he asked the nurse to take the blood pressure machine out of the room because it was too loud. It was off, I didn’t hear anything, but apparently it was making an awful noise. Then the nurse anesthetist made the mistake of asking if he wanted orange bubblegum scented mask for his anesthesia. That brought on a very loud “are you crazy” kind of response from him. I told her to just go unscented. She said oh, that smells like a beach ball and kind of crinkled her nose. Relief on my child’s face, “yeah beach ball”. Yeah beach ball!

When they take him back he says he is okay to go by himself. I looked at the nurse and she nodded her head and said he would be fine. I figured he would be cooperative but again requested they get me immediately when waking up because I wasn’t sure how he would be when he woke up.

They did not come get me. I am sure they thought they knew what they were doing. When they finally take me back the nurse that has him is clearly visibly shaken. My son is grumbling how he wants water and she gives him a little water while trying to explain she doesn’t want his stomach to get upset. “I don’t fucking care, give me water.” She looks a little frightened and of course quickly gives him water.

She explains that he is doing fine but was disoriented when he woke up. I immediately apologize because I am surprised anything in the room is still in one piece. Her eyes get big and she takes a deep breath. “He was fine, he is a really big guy though”. I don’t ever ask what he did. He is angry and aggressive and demanding water. I ask him if his throat hurts. “No, I just want some fucking water.” I have to give him credit for not saying “fucking” too loud. He must have remembered he was in the children’s hospital and he isn’t allowed to swear around children.

He is visibly getting more upset and I am starting to get anxious. I pulled the nurse aside and tell her to try pain medication. I explained that he may be in pain and not able to express it appropriately. My husband starts babbling about how he said he didn’t have pain. SHUT UP, honey! Thankfully the nurse listens to me and he takes the pain medicine. In a few minutes he is calm and quiet and eventually falls asleep.

My husband had to leave for work and I didn’t dare leave his bed side. They finally let us go home at 1PM. Around 5 PM he is starving and only allowed to eat broth, jello, or popcicles and then we can slowly increase his died to soft foods. No tomato, milk, or citrus for a while. Crap the only soup he eats is tomato. Can he live on popsicles?

Finally I remember he does eat the soup broth at his favorite restaurant. They say they do not have containers for soup take out and we would need to bring in containers. Whatever I will bring in whatever you want. I am not sure how that is legal but dear lord no one tell on them because to this day he wants only their soup when he is sick.

After all of that he threw it up. Not because he ate too much but because the noises on his video game were too loud and it made him dizzy. Yeah, of course, why didn’t I think of that. So he is miserable, on bed rest, and can’t play video games. Awesome.

The following week was very stressful for both of us. He did not like his pain medication or his antibiotics. He would refuse to take it and then scream in pain which made his throat hurt worse. I told him to flip me off instead of screaming at me to protect his throat.

We tried different flavors of medication, mixing it with other fluids, using popsicles or other food as chasers, nothing worked. He would be starving but couldn’t eat because of his throat or tired of the few food he could eat. He wouldn’t let anyone else near him, only me and only sometimes, and it was never pleasant. His sleep schedule was all off and he would wake up in intense pain but refuse anything until he woke up completely. It was really quite heart breaking because I couldn’t do anything. I thought about taking him back and telling him to put an IV in him but I figured that would be too traumatic.

Yeah sure, he will be fine. In the end he was fine but it was the worst week of our lives.



Saturday, January 28, 2012

The funniest thing I've seen all week


Oh? MY GOD. I cannot stop laughing at that cow. This is from the always awesome Kendall, at This is Not That Blog. Go there to see more, but really, the cow is the best part. LOOK AT THE COW!!!!!! IT'S SO FUNNY!!!!!

Also, if you're on Twitter and you like to laugh (I know, that's probably not very many of you) you need to start following @RideOrDiePudge. This chick is funnier than I am, I'm not kidding....




Friday, January 27, 2012

TGIF, bitches! Also, though? A story scaffold



Today you can find me over at Just Jennifer's place, talking about stuff that makes me happy. There are drawings. Of me...... messing with my kid. *giggle* Because messing with my kid's head makes me happy..... :)

Here's something else that makes me happy, though. This is a scan of some class work that Child 2 brought home yesterday. I've erased the names, but this was (soooo obviously) done by him and a girl, and it's just so goddamned adorable I can even stand it. I've transcribed it below, since 6 year old handwriting is hard to read for some reason (I corrected the grammar and punctuation because I'm anal like that, I'm anal like that, I'm anal like that, I'm anal like that.....)


Story Scaffold

Title of Story: Barbie and Yoshi

This story begins when Yoshi falls into Barbie's world

The problem is Yoshi can't get back

The next thing that happens is Barbies find Yoshi

Then Barbie says "what the heck?"

After that, Yoshi puts Barbie in his mouth

The problem is solved when Yoshi gets back to his own world.

There is just so much awesome there, I can't even describe it....

Happy Friday! YAY!!



Thursday, January 26, 2012

You'll get nothing and like it!



There is nothing to read here today. Keep moving.... nuthin to see here....

Instead, today you can find me guest posting over at It Builds Character. I wrote something called How To Feel Like an Asshole in Front of Your Child's Teacher.

Intrigued? You know you are.....



Wednesday, January 25, 2012

TEN

My baby boy (Child 1) turns 10 today.

10 years old.

He's 10. Years. Not months.... years.

Double digits. A 1 and a 0 put together.

I don't understand how this happened. How is my little baby 10 years old?

Here are the things I can quickly list that I've gone through in the last 10 years:

1. PCOS (but it worked out okay. Twice!)
2. Preeclampsia
3. Post-partum depression
4. Death of a loved one
5. Autism

I'm probably forgetting lots of stuff, but those seem the most relevant to this discussion.

I've never talked here about the post-partum depression, and I probably will one day, but not today. I'll just say that of the 5 things listed there, that one was definitely the worst. I know it seems odd, since my brother died and that should be worse, but in my opinion there is nothing in the world worse than post-partum depression. Then again, I've never been dying or in chronic pain.

This year I decided I'm not making him a cake, I'm just going to hand him a tub of frosting and a spoon. That's all he ever eats of it, anyway!

Anyway... in honor of this wonderful (?) day (sob) I am giving you guys a present. Some of you have been bugging (the shit out of) me to give you this gift for as long as I've known you, so here you are!!! Finally!!!! A picture of me....


This was taken in April 2002, so it's 10 years later but I pretty much still look like this. Maybe a little older and a little, um... wider.... but more or less the same. Oh, my hair is shorter now, but it's still a big jewfro, so don't worry about that part.

Happy Birthday Child 1 !!!!!



Monday, January 23, 2012

Autism and vaccinations: MY opinion

I thought I'd go and get all controversial on your asses, because why not, right? Actually... the only reason this blog exists in the first place is for me to get shit out of my head and into some other form, and this kind of post is just the thing!

The first thing I need to mention, and stress again and again, is something that never seems to get mentioned whenever this debate comes up. And that bothers me, which is why I'm writing this post. I've seen people screaming passionately at each other, that they know the answer about what autism "is," but I haven't seen anybody ever mention this: There are at least 2 different kinds of autism. There is Infantile Autism, where they are born different and there is Regressive Autism, where they develop normally until about 18 months and they suddenly lose all the progress they've made. The second kind is often combined with some kind of gastrointestinal issues, although they both can be. Why doesn't anybody ever mention this? Well, I don't really know, maybe a lot of people do and I've just never seen it; I don't read about this topic very often because of all the emotional strife it creates for all involved. I think we tend to assume that "our" autism is "the" autism, and anybody whose experience has been different surely isn't talking about anything we can relate to.

So! Having said that, here is some more:

Do I think Child 1's autism was caused by vaccines? No, I do not. Child 1 has infantile autism; he was born that way. He missed pretty much every single milestone there was to miss, except for sleeping through the night, which he did at 3 weeks, and he never had any adverse reactions to any of his shots. He also does not have any of the gastrointestinal issues that are so common with autistic children. And for the record, both of my kids are fully vaccinated and up to date on everything.

Do I think there's a connection between vaccines and autism? Yes I do, although it would be more clear for me to say I think there's a connection between one type of autism and vaccinations. Because even though my experience has not given me any personal evidence, I've heard way too many stories from parents that sound the same: "He was fine until the day he got his MMR, then he developed a fever that lasted for a week, he lost all of his language and he's never been the same since." There's a connection there. No, I don't know what it is; maybe it's some combination of a genetic pre-disposition and the stuff in the shot, I can't tell you more than that, I just very strongly believe that there is a connection.

I was talking about this post on Facebook and struck up a conversation with a mom who does believe that her child was harmed by vaccines. I asked her to write up her experience so that I could post it here:

From birth we had this beautiful alert child who was content to be cuddled and was very easy to live with daily. He was a engaged child that wanted to be cuddled and played with constantly and he preferred even when sleeping to be with us. We all thought it was funny that everyday he and his Daddy would nap together (son sleeping on Daddy's chest) on the couch. At an early age he started to talk and we would go down the road and he would point out and say " mmm, I cream or Izza Izza". He would get so excited by going to Kindergym and singing the songs with the other child and was easily the entertainer when we went to family parties.

Our journey into the solitary world of Autism began around 15 months. After our child had his vaccinations at 15 months of age he developed a high fever, malaise and cried a lot. The site where they gave the MMR and DTAP were swollen, red and hot. After a while he recovered but we started to have issues with him having repeated illnesses such as ear infections, yeast infections and upper respiratory infections. Overall he seemed less responsive and would sit for hour playing by himself and stopped making eye contact. At 18 months like a good mom I took him back for his check up and he got all in one visit Hepatitis B, DTaP, IPV and Varicella injections. Again, by the afternoon, he was cranky, cried inconsolably and ran high fevers with the same skin responses. It was at this point in his life that he started to lose speech ability, started becoming obsessed with playing with things that where not toys instead of his toys, such as the tubing on the vacuum, and he would put objects in and then let them roll out, over and over again. We took him to our local ENT and he recommended having his tonsils removed and did an emergent referral to our Early ON for his loss of language. I can still remember this 6 month time of his life as clear as it was yesterday because it is like we lost him to another world where we could see him but he was only really with us physically. I can say that 6 years later things are better but everyday still breaks our souls when we see how affected he is socially by his differences.
How many of you reading this, right now, can say your story is similar to what I've quoted above? Tell me in the comments, because I have a number in my mind and I'd like to see how accurate my guess is.

My autism story isn't nearly as dramatic: As a baby he hated being around too many people who were talking at once and would cry until I removed him from the situation. He made great eye contact, though, and liked to be held. He babbled on time but crawled and walked late, and when he wasn't actually talking by 18 months I started to worry (actually I started to worry from day 1, but you know what I mean....) The rest, as they say, is history.

Am I suggesting that parents not get their kids vaccinated? OH MY GOD NO. Absolutely not. Like everything in life, you have to play the numbers; weigh the consequences against the risks, and the odds of your unvaccinated child getting measles is higher than the odds of your child regressing because of a shot. And in the end? Measles can kill; autism cannot. I'd rather have an autistic child than a dead one; and so would you.

Then what's my point? My point is, as follows: In my opinion there is enough anecdotal evidence out there to make a hugely convincing case that more research is necessary. Nobody can ever make a truly rational argument that "not trying to learn more about something" is ever the best way to go, despite what you predict "might" happen as a result. Hell, maybe Regressive Autism isn't actually autism after all, it's another condition entirely that mimics the symptoms of Infantile Autism, in which case OKAY! That's what that is! So let's find out.

Say what you want about Andrew Wakefield, and we all know there's a lot you can say about him, but when he inspected the stomach cells of the children in his study, did he find the measles virus in there? Probably somebody is going to tell me that he didn't, but honestly I'm not interested in all the extenuating circumstances involved, or however else anybody wants to talk about how horrible a person he is. I'm not his biggest fan or anything, I just want to know if the measles virus was actually found in the stomach linings of those children: some have said yes, some have said no. Wakefield raised questions and in my opinion there have yet to be any conclusive answers. Frankly I'm tired of hearing about the studies that once again "prove" there is no connection between the shots and autism, because how do you explain that to the mom I talked to? How do you explain to her exactly what happened to her child, if it wasn't the shots? You can't. But you also can't just dismiss her personal experiences simply because yours were different. There is very little science knows about what causes a child to regress for seemingly no reason, and this mom (and many others) want answers.

And in the end, while our stories stories are different, what's most important is that regardless of "type," the end result is usually the same: people living with a complex developmental disorder significantly affecting verbal and nonverbal communication and social interaction, emotional regulation and sensory processing abilities. It is this similar "end result" that makes us fight about this so much, after all, if you didn't follow the same path that I did, how can you possibly be in the same place I am? (I don't really believe that, I'm just saying it as an example). But we are in the same place (more or less), and that's why this issue is so volatile. I'm not saying I have any answers, I'm saying there are too many questions that need explanations, and until we can all be satisfied with concrete scientific results, that can give people like my friend up there an answer to her questions, this debate will go on and on and on and on.

As autism parents and autistic people, we need to get past this divide. We need to move past the Wakefield debate and just accept that our experiences have been different. We need to stop fighting with each other and start working together, because despite everything, we have a common goal: the happiness and well being of every autistic person, regardless of the journey they've taken to get where they are.



Sunday, January 22, 2012

"All Kids Do That" Part 6: Appropriate Responses

Today's contributor is my straight haired twin, Dawn, who blogs at This Side of Typical. YAY Dawn!



"All kids do that": Appropriate Responses.

So my curly haired twin, Jillsmo, is hosting this series about how the things we go through as Autism parents is NOT just like what parents of “typie” kids go through. There was a trend on Twitter a while back-- #youmightbeanautismparentif where we shared the challenges and joys of raising a child with autism. It wasn’t really for anyone OTHER than autie parents, but as we have friends and followers with typical kids, there were a few “well, MY kid does that too” comments made. And it rubbed some of us the wrong way. Ok, a lot of us.

So I’m talkin to my Old Man about it, and he sees nothing wrong with the statement. That they are trying to comfort us and offer empathy—that they are trying to say—“hey, your kid is practically typical!” And you know what? That still bugs.

So then I get going on some intense navel gazing, which is my habit really. Either I am an optimist or I am tapping into my inner Puritan focusing on self–perfection, but I’m always thinking “what am *I* doing wrong?”

Example: there’s a section of Lankershim Blvd (for those of you who know LA) in which the cars around me CONSTANTLY pac-man (not staying in their lane, “eating” the hash marks, if you will). ALL THE TIME. And what do I think? “How am I driving wrong that people do this around me? I don’t hear anyone else bitch about this part of the road…” You see, I spend a lot of time trying to find fault with what I’m doing rather than place blame.

Until it becomes so obvious that thinking like that would lead to an ulcer. Then I will place blame wholeheartedly.

So I’ve been trying to figure out how to work my brain around this concept. Am I just being defensive? Is there a humongous chip on my shoulder when it comes to Autism? Why can’t I just see the empathy and camaraderie that some folks are trying to convey?

Ok. First problem: the phrase “some” folks. We know that within the people who are just trying to be comforting are the folks that are internally saying:

  • quit bitchin about your kid—we don’t care about autism
  • life is no harder than yours, so you don’t get the right to bitch
  • ok, this is when we stop talking about you and start talking about me

So, as well meaning as “some” people are—we don’t necessarily hear it amongst all the others. Because once you’ve heard any of those other tones, it’s hard to hear the good stuff.

Second problem: that trend wasn’t to say “oh, look at how hard my life is,” but rather a “hey, we’re not alone in this, are we?” Because that’s what our internet relationships are like in the Autie world. 99% of my friends with kids with Autism are internet relationships. And without them I would be a fucking mess (as compared to the chaste mess I am currently?) We reach out to these other parents for a sense of community we may not have around us due to lack of connection or *ahem* a hermit-like misanthropic view on life. *ahem*

And as I’m diving deeper into my bellybutton (wow, that’s a lot of lint) I realize that as much as it is annoying because our lives are very different from the lives of typical parents, it’s boiling down to more of a courtesy thing that’s buggin me.

To help clarify this, I will step AWAY from Autism.

[Let it be noted that I am NOT comparing Autism to cancer in any way. This is hyperbole. Thank you—the management.]

Let’s say you have Cancer. Like ovarian or something that has made you infertile. And you’ve never had a kid even though you always wanted one. And you are going through a round of chemo. So you are physically sick and emotionally sick and you feel like you’re dying, BECAUSE YOU ARE, and while you are normally a stoic survivor, you feel like ass, so you take a moment to have a pity party and complain about the nausea and lack of energy that chemo does to you. And your fertile friend Sally with her eight kids in tow and a big belly looks at you and says “yeah, all my pregnancies make me feel like that too.”

You wanna smack her, right? Like hard. With a chair.

Because in ANY situation in which a person is sharing a hardship (I’m not talking complaining here—that’s an entirely different topic) there are only a few respectful responses:

  • That must be tough
  • That sounds entirely frustrating
  • What can I do to help?
  • Do you like your margaritas blended or on the rocks?

Because when someone is sharing—I mean really sharing, there is no place for a story about you, unless you are asked something like “what would you do,” in which case you can totally tell them how you had to hide the body that one time, and boy, blood just will NOT come out of shag carpeting.

And don’t get me wrong, I struggle with this as well. Sometimes I catch myself doing it, and then I feel like an eejit and then offer baked goods in exchange for my callousness. And when someone really breaks down and shares all sorts of tragic, touchy feely shit, I am often mute when people share with me because I feel like ANYTHING I say will sound stupid—and that’s tagged me as a good listener. Which is odd, considering my hatred for anything remotely involved in human emotion.

So, maybe what I’m trying to say is that it might be a good idea to THINK before you SPEAK. Revolutionary, I know.

We aren’t complaining. We are sharing. Our lives, while seemingly the same, are DIFFERENT. Period. A completely different paradigm. (wow, I haven’t used this much vocabulary since college!) We are not saying it is worse, or better, or the same. We are just SAYING. And all we are really looking for is a nod an a refill.

Maybe that’s our problem. We need more bartenders in our life. Yes. That’s it! When you don’t know what to say, bring out your internal bartender! I don’t know about you, but for me, he ALWAYS has the right response.



Saturday, January 21, 2012

Never make assumptions

... because it makes an ass out of you and umption. AmIRight???

Yesterday I was at the grocery store with Children 1 and 2. Child 1 really likes to walk/run down the aisles and watch the food go by out of the corner of his eye, so I'm used to having to tell him to watch where he's going and such. He was walking down an aisle, and there was a woman crouched down, inspecting a can of something. He stood right in front of her, too close, and waited for her to move away. From the other end of the aisle, where I was stuck behind Child 2 and a bunch of other people, I started yelling to him "Child 1. Go around her, please!" But he didn't, he just stood there. She eventually got up, with a really annoyed expression on her face, so that he could pass.

She was quite obviously not pleased.

As I walked by her, I expected her to say something to me about my rude children, but she didn't. I said "excuse me; sorry" and kept going and she didn't say anything.

I was kind of pissed, and as I walked through the rest of the store, I played a potential argument over and over in my head. She would say "your child is so rude!" and I would say "he's autistic. And you're a bitch!" or something... I hoped that we would see her again so that I could actually teach her a lesson.

In the checkout line, I noticed she was a few people behind us. Child 1, as usual, was not waiting in the line next to me, but was, instead, pacing back and forth and stimming in the space behind her. Being unaware of social boundaries, as he is, he was constantly getting too close to her and quite obviously invading her space. "Good," I thought. "Let's see what she does now."

But it was then that I noticed the way she was holding herself as he went by her. Her arms were in tight to her sides, and she was hugging her basket as if she was clinging onto it for dear life. And the look on her face wasn't that of annoyance, it was pure discomfort. She wasn't annoyed by him invading her space, she was very very uncomfortable with it.

And THEN I noticed that she was wearing headphones. Not headphones that were attached to an mp3 player, either: noise canceling headphones.

This woman was possibly autistic, herself.

And there I was, making assumptions about her, and figuring that she was judging me and my child, when in fact that's what I was doing about her.

I called Child 1 over so that he would leave her alone and we finished up our business and went on our way, but I definitely learned a lesson there: never assume you know anything about a person just by looking at them.

I won't make that mistake again.



Friday, January 20, 2012

The Dive Bar Welcomes: Your Bitch's Bitch

Today's contributor wishes to remain anonymous, for rather obvious reasons. I don't know about you guys, but I like a woman who says "fuck you so hard."


Dear Boss Guy.

You employ my boyfriend. He is the father of my three children. You pay him a shitty rate and treat him like dirt. He takes it from you because we both want me to stay home with our kids, so he has to support us. I would like to take this opportunity to say FUCK YOU. Fuck you so hard. And not in the good way. Because of your shitty planning, he leaves for work before dawn every morning and comes home close to midnight. By the time he gets home, he's worn out and exhausted, and can't/won't help me with the kids. I'm so fucking frazzled from basically being a single mom these past few months that I've become an even bigger bitch than nature and my shitty childhood would have me be.

Because of your lack of home training and people skills, you treat him like shit. He has to take it and so comes home and takes it out on us. See above about my bitchiness, and you can guess how that turns out. So thanks for ruining my relationship, too. Thanks, too, for physically wearing him out so much that I haven't gotten laid in weeks. That's just icing on the fucking cake.

Your employee has a family. A family that you're fucking with by being a terrible boss and an all-around horrible person. So please, from me to you, go jump off a fucking bridge.

Sincerely,
Your bitch's bitch.



Thursday, January 19, 2012

Conversations with Child 2





Wednesday, January 18, 2012

#SOPASTRIKE



This site is going dark today in order to protest SOPA and PIPA.

EDIT: And we're back!!! I made it 17 hours!!! Impressed???



Tuesday, January 17, 2012

"All Kids Do That" Part 5: Explaining what it's like

See the tab above for more information about this series.

I didn't really know what to call this one because it doesn't address a specific topic, but it does do a great job in explaining the purpose of what we're doing here with this series. (Just in case you don't know, "NT" is short for Neurotypical.)

I've been running these on Wednesdays and Sundays but I'm doing this one out of order today because tomorrow I'll be dark to protest SOPA.

So! Today's post is from Carrie who blogs at Pooping Red Guy & Friends


For me, a lot of this comes down to what's developmentally and age appropriate. Sure, my kid may throw horrific tantrums like NT kids, but the truths those NT kids who are throwing horrific tantrums are toddlers, NOT ten year olds. That's just one example...

Autism is NT behavior with a thousand times the intensity. NT parents may joke that losing a favorite toy is the end of the world, but it's not really. A thirty minute crying jag might even be considered excessive for NT kid. You console the NT kid, give hugs, reframe the loss, no one gets hurt. For a kid with autism a thirty minute crying jag is minimal and often a victory in using coping skills if its just tears. Yet, it's rarely just crying. It's life-will-never-be-the-same, soul crushing agony mixed with bouts of rage because the kid feels unheard and unable to express the loss to anyone. When an autism parent says its the end of the world, it's literal. It is the end of the world for their child. Life cannot move on and you cannot console your child into happiness again. Life stops and that issue becomes your whole day.

NT parents see our hashtag and think we are making light of parenting tribulations with hyperbole. We aren't using hyperbole. We are talking about our reality without exaggeration. Without embellishment to make it funny or humorous. We are telling true stories about our lives as parents. When reading the tag, many NT parents don't realize that posts are about kids from all age groups, even young adults. They don't understand we are stating our reality and the reality of our children. They think we are doing the NT dramatization that occurs with NT parents when talking about their children to make light of common parenting problems.

When NT parents say "that's all kids" they might as well say "autism isn't real". Instead of listening to learn something about autism, they close their minds and open their mouths. They don't want to believe or can't believe that what we are saying is no exaggeration. It's not hyperbole. It's honest to goodness truth about our daily lives. It doesn't match what they learned on television, either. It sounds hard and terrible. People get squeamish. Perhaps they recognize there own struggles in our words then maybe there kids are 'different'... maybe their kids are autistic. That's a scary thought for any parent. If it's our kids who truly aren't different, but merely badly behaved, then they can cross that worry off their list. There's no chance of the having a kid with autism. Perhaps they think special needs parents are just looking for attention. I don't know the reasoning for sure.

Whatever it is, there is a hang up of some kind out there about autism that makes NT parents say "it's not autism, it's all kids". We know in our core of as parents of kids with autism that hearing "that's all kids" hurts our kids. We may not be able to articulate it, but our internal warning sirens sound the alarm so that the statement doesn't sit well at all. It devalues the tag, for whatever reason, and we all know it. Maybe because we parents and our kids have to work a thousand times harder than our respective NT counterparts. Saying "it's all kids" throws the validation of our plight, fears, concerns and victories out the window.



Monday, January 16, 2012

How to suck at blogging: LIKE A BOSS.

Here's a pro blogging tip I just learned and/or made up. When you have absolutely nothing to write about, but still would like to post something, follow these simple steps:

1. Take a picture of something adorable that one of your children produced with their own hands



2. Add some music




3.  ?????

4. Profit!!

Disclaimer: Joke not even original



Sunday, January 15, 2012

"All Kids Do That" Part 4: Sleeping

See the tab above for more information about this series.

Today's contribution was written by Amanda, who blogs at Confessions from Household Six. zzzzzzzzzzzz............


Sleep Is For The Weak

We all know to expect to be sleep deprived when we have a newborn. It just comes with the territory. That's why we were pleasantly surprised when our first child slept through the night almost from the very beginning. We'd find out later, this was Mother Nature's cruel, evil plot to get us to procreate again. Really as many problems as we had with our oldest, it wasn't bad. So we decided to try again for a second child, who we affectionately dubbed "Plan B," until we had a proper name chosen.

"Plan B," turned out to be a sleeping nightmare. If I had my second child the first time, he would be an only child. He was born what the medical professionals call a late term preemie at 35 weeks, 1 day. He didn't have to stay in the NICU because of that one day (any baby under 35 weeks where we were was an automatic NICU stay). He got to go home with us. We thought this was a good thing. I wanted to take him back after three nights.

This child would only sleep 20 minutes at a time. On MY chest. Or with ME holding him. No one else. ME. The rest of my time was spent wiping his butt, feeding him, burping him, changing his clothes from the formula he puked all over, and holding him. I could not put the child down. He screamed. I couldn't hand him to anyone else. He screamed. Day and night, I got to sleep about 20 minutes of every hour.

Understandably, my memory of this time is a little fuzzy. I was severely sleep deprived. After a few weeks, he settled into a routine where he would sleep for 30 minutes, sometimes even an hour. Sometimes 15 minutes in his bassinet. I was starting to brush my teeth again on a regular basis at least. During this phase this child also started this really fun thing where he would wake up at about 1am for anywhere from 1-3 hours. We spent the next 5 months with him sleeping in the travel bassinet, and me on the couch so my husband could at least function for work. All through this I was SO thankful my older child was in school so I could nap when the baby slept. Otherwise I would've been totally screwed.

Fast forward to age 4 since that's where I next really remember anything significant. We haven't really slept for the duration of this child's life. After the night where he woke us up every 22 minutes, I was ready to rent him out to the CIA. We finally by this point had an autism diagnosis for both boys. We were a year into the older child's diagnosis, and only a few months into the younger child's. We now had an idea of why this child didn't sleep. We were referred to a neurologist. The neurologist it turned out was only comfortable prescribing one med. We had to find a psych- ologist, -chiatrist, someone to get this child meds. No one the neurologist recommended was approved by our insurance. The insurance office tried to refer us to the ABA therapist. I then had to research a list of no less than 17 behavioral health providers to find one qualified and accepting patients to treat a 4 year old. I came up empty. Then the insurance office gave me the name of a CNRP.

The CNRP we see is fantastic. She understood about the sensory needs right away. She understood that even though a couple of behaviors may be atypical, this child IS on the autism spectrum. Most importantly, she found us a medication that allows us to sleep through the night - provided he also has his blankies, toy, fan for noise, and bed tent. We still wake up early in the morning, but it's not every 20 minutes. It's not 20 minutes of every hour. It's not 5am. It's been 6:30am. I never thought 6:30am would be such a glorious time, but it is. Compared to the sleep we've had over the last 5 years, it's sleeping in late.

Now if I could just get my doctor to understand why my sleeping patterns are off. I'm sure his would be too if he hadn't really slept since 2004.



Saturday, January 14, 2012

Spotted in Berkeley: Sour Mash Hug Band

That instrument she's playing is called a Washtub Bass, which is literally just a bucket, a pole and some rope. AMAZING!!!!

I saw these guys playing at the Farmer's Market earlier today, and they are AWESOME. I didn't have enough money to buy a CD but I found them all over YouTube. I guess you have to like this kind of music, which I fortunately do, but even so... they are amazingly talented. I've always wanted to be in a band that plays on street corners and Farmer's Markets or inside BART stations. How awesome would that be?


Here something I found on YouTube:





Song of the Day: What Light

I heard this song while listening to my collection on shuffle, and I thought it was Bob Dylan. I'm not sure what that says about me.... or Bob Dylan... or Wilco... yet here we are. (Was Bob Dylan the original hipster?)

Anyway, I think the message in this song is a lesson we all need to remember, and it doesn't matter who we are... either special needs parents or single people. You have to be strong for yourself before you can be strong for somebody else.

I try to remind myself of that, anyway....




What Light
Wilco

If you feel like singing a song
And you want other people to sing along
Just sing what you feel
Don’t let anyone say it’s wrong

And if you’re trying to paint a picture
But you’re not sure which colors belong
Just paint what you see
Don’t let anyone say it’s wrong

And if you’re strung out like a kite
Or stung awake in the night
It’s alright to be frightened

When there’s a light (what light)
There’s a light (one light)
There’s a light (white light)
Inside of you

If you think you might need somebody
To pick you up when you drag
Don’t lose sight of yourself
Don’t let anyone change your bag

And if the whole world’s singing your songs
And all of your paintings have been hung
Just remember what was yours is everyone’s from now on

And that’s not wrong or right
But you can struggle with it all you like
You'll only get uptight

Because there’s a light (what light)
There’s a light (one light)
ETC



Friday, January 13, 2012

Dearly Beloved, We Are Gathered Together Today...

Dearly beloved, we are gathered here today, three bloggers together, to address a serious issue that has become so commonplace throughout social media for special needs parents and the special needs community as a whole, we aren't shocked when it happens anymore. Please welcome Jill from Yeah. Good Times., Lisa, the Yuckmouth Mommy from 7 Yuckmouths and Autism, and Caryn, from Living with Logan. This post will go live simultaneously on all three sites today, because we are united in our desire to get the word out. Please help us in this effort, and pass it along.

The issue, as you may have guessed, is the frequency with which the special needs community is getting scammed through false organizations and individuals, who prey on our desire to help our children. We've put together a little dialogue that we hope will be helpful in learning to protect ourselves as thoroughly as we protect our children. The truth of the matter is this: if we don't protect ourselves, no one else will. Each comment will be followed by the initials of the author, and we welcome comments and questions from all. Please be respectful in your comments, or they will be deleted. There is enough drama and cat fighting. We don't need more.

And now, welcome to our conversation!

1.  Do you think the Special Needs Parenting Community as a whole is vulnerable to cyber scammers?

Yes, I do. I think we are easily targeted for a number of reasons. We are fighters. We are strong. We have to be so, to advocate for our children. People desiring to scam us love this attribute, because they don’t have to teach us to work toward the goal. We are focused, as every parent is, in getting whatever our child/children needs. We hit so many dead ends, we are told “No” so many times in so many different ways that we love it when someone says yes. There is a veritable target on our backs. I don’t mean that we are stupid. Certainly we are not. We are intelligent, we work hard, and we fight for what we believe in. And, let’s face it, people. We like to talk. If we find something we think is awesome for our kids, it’s all over the twitter and the facebook the very same day. What scammer wouldn’t love any of that?! Not only that, those of us that blog are only too happy to blog about our good fortune, because we want others to benefit as well. This is a win/win for a scammer. People who will promote online, at their own expense of time and effort, with no cost to the scammer but one or two iPads or a couple of apps, and then they never have to make good again. They already have all the good exposure they need. It’s scary how easy we have made it for the slime balls of the internet. CH

2.  What are some “red flags” that somebody might be scamming you?

Generally, I follow the “if it sounds too good to be true, it usually is” rule. Someone asking you for money when offering a “free” product or service such as purchasing a raffle ticket or forking over a nominal fee to “keep your reservation valid” is a sign of a scam. Likewise, someone asking you to write a blog post, collect donations, or generate votes to qualify your child for a free service dog, for instance, is a sign of a scam. CH

Trust your instincts. If it doesn’t feel right to you, it’s likely that it isn’t, so ask questions. Who are these people? Where are they located? Do they have any other sources of funding? Do they have (valid) testimonials and references? A huge red flag is if you ask direct questions and consistently do not get direct answers. If they can’t provide you with valid financial information, or they refuse to provide any personally identifiable information about themselves: be careful. Scammers are like politicians; they will talk around the issue, touching on their key “talking points,” but they will rarely ever actually answer your question directly. A reputable organization will be easily able to provide you with whatever you need to know to prove their validity. Jill

Also, anybody who requires any money from you, in any form (i.e. directly from you, solicited by you, etc.) before you can proceed with an application process is definitely scamming you. Trustworthy organizations will not require that you pay to complete an application process. Jill

3.  How can you protect yourself?

I’m sorry, but someone offering a “free” iPad or service dog or therapy or miracle “cure” for autism just doesn’t ring like the real deal to me. I’m a BIG believer in doing my homework. Read the fine print. What strings are attached? What commitments are they asking from you? Are they registered as a 501 3(c)? If so, have they been reported at any time in any way? Are they registered with the BBB? Is it a company, foundation, or individual? Are they based in your country or somewhere you’ve never heard of in Bangladesh? Do they offer transparency if they are a donation based company? Will they provide statements to anyone who asks? Are the founders or other officials easily accessible to their followers by chat, message board, email, facebook, twitter, or corporate phone number? Is there a message board/review panel of any kind for feedback from people who have worked with this person or company in the past? Does the person or company bash other similar entities regularly? These are questions you should ask yourself before becoming involved with ANY internet based company or foundation. CH

4.  What to do when you have already been scammed, or private info has been published on social networking sites?

There are many ways to protect yourself on facebook and twitter. Both sites have very firm TOS (Terms Of Service) in place to protect their users, its just a matter of finding where to do all of this. LG

First you can report any and all comments you feel are attacking you in any way. You need to make sure that you first screen shot for proof later because once a comment or post is reported it is removed. I find it much easier to watch a video of what I should be doing and this google search has all the info for how to screen shot on various devices. LG

On twitter there is a way to report people twitter has a really handy page that is clear as how to report a number of violations of their TOS. In addition you have to give them the url to the post so make sure you click on details in the tweet, that will open to a new page and give you the url to give to twitter. LG

On Facebook you can find out lots about your account in your general account setting tab. From there click on security settings. On that page is a wealth of info in regards to what, when and who has had access to your account that you may not have known about. LG

From that page it is easy to click on the help button towards the bottom of the page, there you can report violations from harassment, to copyright infringement, and intellectual property infringement. Because even as a fan page you have rights on facebook just like everyone else. LG

For more information on cyber crimes, how to report them, and definitions of cyber crimes, please visit the following websites:

Cyberstalking: What it is and what you can do as a victim

Computer Crime and Intellectual Property Section of the United States Department of Justice

What Are Your Legal Rights?

Image in this post from Google images



Thursday, January 12, 2012

Johnson's body care, take me away....

It was Tuesday morning and it was of those days.

You know those days.

My house was a gigantic fucking nightmare, there was crap everywhere, sometimes literally, it smelled like a goddamn litterbox and there were piles of laundry in random places and underwear seemingly everywhere. You know that Simpsons episode where Marge gets up in the morning and keeps finding underwear all over her house? And she walks through picking them up saying "underwear.... underwear.... more underwear...." and she finds them in the freezer and such? It was like that. (Actually, sometimes I feel like my entire life is like that scene. I've been trying to find a clip of that on YouTube and haven't been successful, but if you saw it, trust me, you would laugh.)

So there was laundry and underwear everywhere.... and..... it was the little things. The little things that kept happening.... you know... little. fucking. things. For example, there was this plate of cat food in the middle of the floor in the kitchen that I kept stepping on; squishy cat food..... with my bare feet. And somebody had spilled a glass of water on the carpet, and I was apparently unable to walk across the room without stepping in said wet spot.... with my bare feet (at least it washed off the squishy cat food?) And the really long easel paper that Child 1 likes to spread out in the front room and draw BART tracks on had been attacked by cats the night before and, um... well, they did bad things to it. And I was trying to get everybody ready for school, but I couldn't even walk because there were cats constantly circling around my ankles (I call it "Constant Cat").

For some reason, Child 2 always manages to find some reason to melt down right before we're about to walk out the door. It never fails, in fact, I don't think we've had a single day this whole school year where he hasn't been crying about something as he gets in the car. I've tried many different ways to figure out how to make this not happen, but I guess he is determined to be crying as he walks out the door every fucking day; always making us late, of course. And Child 1 was in this weird trance, probably because his BART drawings had been fouled by cats the night before, so it was really hard to get the two of them to put their shoes on and get out the door. (Oh, and BY THE WAY, judgey fucking Berkeley parents? YES. I drive my kids the 6 fucking blocks to school every morning. That's right, I see you on your fucking bikes giving me the stink eye because you know how close I live and am still driving by you. My mornings are fucking hard enough and driving my kids instead of dragging them the 6 blocks to school makes my life just a teeny, tiny bit easer, so I'm going to fucking do it. I don't care what you think about me and I certainly don't care if it's bad for the planet. FUCK THE PLANET)

Here, I drew it for you:



The breaking point came when I was trying to microwave my breakfast, but the glass tray that turns the food around while it cooks simply refused to fit in into the little hole dealie that it goes into, which meant I couldn't heat up my food until that fucking thing got in there. I snapped and SCREAMED "GAAAAHHHHHHHHHHHHHHHHHHH" and started banging the glass thingy against the bottom of the microwave. Poor hubs comes running out of the bedroom upstairs to say "oh my god are you okay??" and I was like this

SORRY HUBS!!

Okay, so I finally get the kids off to school and I head over to my client. I get there, and she's standing on the street with some police officers, because her studio has been broken into. Again. She runs an art studio for kids and for some reason people really like to break down her front door. I don't know why. She's really cool and was obviously very distraught, considering that pieces of wood and door hardware were literally halfway across the room. So I was like... seriously, Today? WTF is wrong with you?? Do you just have it in for everybody??? and I head into her office in the back to get my work done.

I sit down at her desk and am greeting by this:


... and I just started laughing my ass off, because..... seriously? Help me unwind and feel at ease? Do you think the lotion has that kind of power? Will it erase the shitty morning I just had? Will it melt all my stress away with its lavender and chamomile powers? I bet it smells GOOD, though.

It actually did smell good, and I happily moisturized my hands with it, and while it seemed to lack sufficient power to actually "melt" away my stress, I was allowed a lovely chuckle at its presumptuousness. So, thank you, Johnson's Body Care, you actually semi-succeeded with your lame marketing attempt, and you made my day just a little bit better.



I hope you all read my guest post yesterday, over at AutismWonderland. If not... FUCKING GO!!!!!



Wednesday, January 11, 2012

"All Kids Do That" Part 3: Hating school

See the tab above for more information about this series.

Today's contribution is from Jen, who blogs at Living Life With a Side of Autism. I can really relate to this one....



Every Kid Hates School!!!

It's true. Most kids, at one point or another during the first 18 years of life, mutter, scream or moan these three words: I hate school. You have to go sit behind a desk for 6+ hours each day, and listen to boring teachers give boring lectures on topics that literally make you want to remove your brain from your head, and ease into a gentle zombie-like sleep.

As unappealing as the educational aspects of school are, though, you have to admit there were some pretty good times. Best friends (I can remember mine from Kindergarten, even!), birthday parties, sports (not so much for me, but I am sure some of you can actually catch a ball without using your face), and other hobbies and activities that made dragging your butt out of bed before the break of dawn not a total tragedy.

But, what if all the fun things about going to school didn't exist? What if you didn't have a friends, let alone a best friend? What if you didn't get invited to parties, and were so overstimulated playing sports that gym (and all other physical activities) were a total nightmare? What if you couldn't handle the anxiety of the day, and had crying/screaming meltdowns in front of your classmates? (what if you hit your classmates?) What if the cafeteria was too loud, so you had to eat lunch alone, with just an aide? And getting back to the educational part every kid hates, what if you actually had trouble with something like reading comprehension, and you hated doing your work because you didn't get it, not just because there were 1000 others things you would rather be doing? (and what if you were so inflexible that even if someone did try to help you, the knowledge you can't do something perfectly sends you into a tailspin?) These are just a few things Katie deals with on a daily basis that make school hard.

And what if people just didn't understand how to help you, or thought you had total control over your emotions and feelings, so instead of being helped you were punished? What if you were just a little kid, so scared about entering the building, you bolted at drop off, trying to run home.

My daughter turns 8 today, and she has Autism. She hates school, but not like every other kid hates school. All of the things I listed above, the things that don't exist in her world-close friends, party invitations, the ability to manage anxiety or have any emotional regulation at all-they are what make school a hellish nightmare. Every day it is like sending a lamb off to slaughter. I have no idea how to help her, and the only thing she is able to tell me is "I hate school", or, even better, "I hate my life". No specifics. No idea about what exactly is bothering her so I can formulate a plan to help. We can guess, but we don't ever truly know.

I get told a lot that the things Katie does or says are typical of every child. To some extent that is true. But it is important to realize, for Katie, it's just not the same. And that she isn't a bad kid, and that I am not a bad parent. I fight every day to make her life easier, and to feel less like I am making it worse by sending her to class.

I will say this, 2nd grade, thus far, has been far better than any previous year. We are finally working with a team leader who gets it. Who is bending over backwards to help Katie. Who genuinely wants to see my child happy, and who knows that she is not. Like I said, Katie is 8 today, and has been in the public school system since she turned 3. This is the first year someone other than us seemed to care about her, as more than just a number. This woman has been a gift, and I wish she could stay with us forever. It worries me that she won't.

I know it feels like the right thing to say to a parent whose child has special needs, that every kid acts like that, or says those things, or feels this way. We get that people are trying to make us feel better, but what would really make me feel better is the acknowledgment that things are not the same. That our struggles run much deeper than those with a typical child. I don't want your pity, but I also don't want someone telling me that all kids are like that, and it's perfectly normal. Trust me, that couldn't be further from the truth.



Tuesday, January 10, 2012

Ahhhhh, that's so much better

Before I get started with the rambling I'd just like to call your attention to my post title and tell you that you should be reading it with this in your head:





You? ARE WELCOME.

Child 1 is back to being himself and I'm so very very happy about that. On Friday after school is was like he had snapped out of it (in case you have no freakin idea what I'm talking about) and was smiling and laughing again. But I was afraid that it would all go back to the way it was before when school started again this week but it totally didn't. HE'S BACK! MY BABY IS BACK!!!

All last week it was like there was a lead weight lying on my heart (and I subsequently broke my New Year's resolution, but that's okay. I forgive myself. Today is another day. A journey of a thousand miles begins with a single step. Don't cry over spilt milk. A nod's as good as a wink to a blind horse. Hindsight is 20/20. A stitch in time saves nine. etc. etc.) He hadn't even been stimming, he was so depressed. I didn't even realize that until the entire house was once again shaking with his running back and forth on Friday afternoon, and MAN was that a beautiful sound.

So, much like Peter in the above video, the pressure has been released; there is no more buildup of steam that needs to be set free. The lead weight is lifted.

Much better. :)



Monday, January 9, 2012

Text conversations with the Hubs

Yesterday I went to Trader Joe's while Hubs stayed in bed with the boys. I went for a bunch of stuff but my most important mission was to get strawberries for a very cranky Child 2. Here is the text conversation we had while I was there:


Me: There are no strawberries

Hubs: I have relayed the bad news.

Hubs: Child 2 says you have to go somewhere that has strawberries.

Me: Oh does he?

Hubs: Yes he does, although he didn't say it so much as whine it.

Me: Ask him what his second choice is.

Hubs: 2nd choice is strawberries. Also his 3rd choice is strawberries.

Me: I'm getting grapes.

Hubs: He whined "OK" on the grapes.

Me: I think I'll blog this conversation.

Hubs: Cranky boy will suffer the wrath of Daddy.

Me: Oh, I'm definitely going to blog about this.

Me: Okay, I'm done, do you need anything else?

Hubs: A beej?

Me: I'll ask.



Sunday, January 8, 2012

"All Kids Do That" Part 2: Doctor Visits

This series continues, as promised! I've added a new tab up at the top which explains what I'm doing here and all that.

Today I'm happy to welcome Becky, who blogs at Defining "Normal", who is not only our first contributor to this series in the new year, but who has been very helpful to me in my organizational difficulties trying to make this series happen. You don't need to know the details, let's just all be thankful to Becky for being cool. Thank you, Becky!!!



This summer, my husband and I made an appointment for Katie at the eye doctor. I prepped her as to what was going to happen (mainly the eye drop portion of it.) I explained at length WHY those things would need to happen. I also really emphasized that she HAD to allow the doctors and assistants to do their jobs. She stated she understood. She was actually excited about going to the eye doctor. She was thrilled when we got there and went around looking at the glasses trying to pick out which ones she would have. She told me she wanted some that were yellow with purple flowers. Thank God they don’t make any that look like that!

We got into the examination room and she did great looking through all the various devices and doing what she was told. Then came time for the eye drops. I had attempted to prepare the staff about Katie. When I called to make the appointment I had told them that she has autism and that she does not like having her face/head messed with. I TOLD them that putting in the eye drops to dilate her eyes was going to be an issue. “Oh don’t worry, we deal with children all the time.” Well, you haven’t dealt with MY kid. When we arrived at the appointment, I reminded them, “My daughter has autism and she doesn’t like having her face messed with. The eye drops are going to be a problem.” Again, “Oh, don’t worry, we deal with children all the time.” *sigh* When it came time for the eye drops, I told the assistant, “Katie has autism. She does not like having her face messed with. This is going to be a challenge.” “Oh, it will be fine. I work with kids all the time.” What happened next was straight out of a time passed where they tortured patients at hospitals… They laid her back in the chair and I could see her beginning to panic. Then, the assistant came to stand over her and tried talking to her. The hands came up to the face and the yelling/crying began. Katie is a very vocal and verbal child. She is FULLY capable of relating to those around her how much she dislikes a situation, and she did just that. I stood back and watched in absolute horror/vindication. I tried to tell them! I mostly stood by to see the man struggle with the situation, but I finally took pity on him and I went over to help by holding her hands down. I told her over and over again, “Let the man do his job. You need to have these eye drops to make sure your eyes are healthy.” All the while getting louder and louder. She was also getting louder and louder. I can only imagine what the people in the other exam rooms were thinking. Now, since her hands were pinned down, she scrunched her eyes up. The poor man (kid really) tried to get the drops in. He had us go out to the waiting room while the drops did their stuff. Poor Katie was all red from crying and she was all sweaty from the stress the whole situation had caused her. But, she was happy to be done with it all and enjoyed looking at all the glasses. After about twenty minutes, the man (kid) came back to check her eyes… We had to try the drops again. The first go round didn’t take. *FUCK*

This time, when we went in to the room, I explained to Katie that we had to do the drops again because she fought so hard the first time, they didn’t get into her eyes. Panic immediately set in. Poor kiddo almost hyperventilated. The poor man came back in looking absolutely worn out before we even began and I could tell he was dreading this whole repeat experience. This time, I practically laid on top of Katie pinning her arms at her sides and used my hands to wedge her head still and pry open her eyes. She screamed like I was killing her. At the end of it all, the man looked at me wide eyed and apologized. A lot. Hopefully, he learned something from this. I’m sure he will remember it. I know that Katie and I will.

This is not something that Katie will just grow out of. She has an absolute dislike of these types of things. It is complete sensory overload for her. Yes, she will learn to cope with it, but this kind of stuff is ALWAYS going to be a challenge for her. Even though she knows having her ears cleaned and her earrings changed doesn’t hurt. Even though she WANTS it done, it is a huge source of stress for her, yet she doesn’t want to give up her pierced ears. “Normal” kids may have issues like this the first time or two it happens, but eventually they get over it. Ours won’t.



Saturday, January 7, 2012

If it seems too good to be true, it probably is

There have been a few controversies in the past few weeks that I've been following; they involve people claiming to represent reputable organizations that give things to families with autistic children. (I'm not going to mention any specifics because people like this tend to be litigious.)

The premise is the same, though: An organization says "we'll give you something for free to help your autistic child," and you think "wow! That's the best thing ever!" But then it turns out that they're just frauds and cheaters and you not only have lost your money or your time or whatever it was you gave them, you have also lost the hope that you had for the thing that was probably going to make all the difference for your child. The thing that you wish more than anything you could have, but it's just so damn expensive. This person came along and told you you could have it for free, but it turned out that they were liars. It's not fair. It's horrible. It sucks.

This is just my reminder to all the special needs families out there who are broke and desperate and pushed to their limits: people will take advantage of your need. People don't care that you're stressed beyond belief and have no money or time and you just want that thing that will make your kid's life a little easier. They just want your money; they don't care about your kid. It's hard for me to even believe that people like this exist, but they do. They do.

I would warn you to do your research before you make any commitments, but you probably don't have the time for that. While that's good advice, my biggest warning is that if somebody comes along with something that seems too good to be true? It probably is. Try not to get your hopes up, no matter how hard that is, because lost hope is so much worse than lost money or time.

And remember: there's a huge community of honest people out there who will have your back; don't be afraid to ask for help.

Related: Here is a good example of how people can be honest and good.



Friday, January 6, 2012

Things I Find In My House 12



uhhhhh..... doesn't somebody need that somewhere.... or something /



Thursday, January 5, 2012

Angst, ennui, desolation and other words I found in a thesaurus

Child 1 is depressed. He had an awesome winter break; I can't remember the last time I saw him so happy. There was no school, no schedule, he could do whatever he wanted and wherever he wanted, he got to ride BART all the time, he went sledding in the snow, it was fan-fricking-tastic.

Now he's back at school and he's really sad. It's awful. I haven't seen him smile since Sunday, I think. He's pale; he looks horrible. I try to talk to him and he tells me to "go away." Yesterday he literally pushed me away. I ask him if he's sad and he says "I don't want to talk about it." I ask him if he's happy and he says "no." Then he tells me to go away. I'm not even allowed in his room.

Probably the greatest gift I have received from this blogging thing is having become friends with adult autistics, who can (do their best to) help me understand what's going on in his head, because they've been there, too, for the most part. (I call them "Rachel and the Two Emilies." Okay, that's what I call them now. What happened to Laura, though? I miss her.) I can't remember which Emily once commented here that she always hated when her parents would constantly ask her what was wrong, because she couldn't tell them and yet they kept asking, and ever since she told me that I have stopped asking; stopped asking constantly, anyway. I have this problem, you see, and that's I'm really bad at not knowing stuff. If there's some piece of information that I know is out there, I want it. I want to know, good or bad, I want to know what it is. But I can't know, in this case, so I need to stop asking him. I need to leave him alone and just not know.

It's fucking killing me.

I hate this; I hate this, I HATE THIS!! I want to fix it... but I can't. Even if he told me "I'm sad because I hate school so very very much," there would still be nothing I could do to fix it, but at least I would know. I wouldn't be playing this constant guessing game; thinking that I know what the deal is and hoping that I'm right. But there's nothing I can do. I'm totally helpless. I HATE THIS.

I've been thinking lately about how raising your children is about making them be farther away from you. When they're babies, you know about every poop, every pee, everything they eat, every time they smile... and the older they get, the less you get to know these things, and that's apparently the mark of good parenting. That you know nothing about what they're doing and thinking and you just have to hope that one day they'll come back to you. I'm constantly fighting the urge to grab them up and run home with them to safety. But that's not what I'm supposed to do, as a "good" parent; I'm supposed to let them make their own way and hope that I've given them enough skills and self confidence so that they can do it.

Fuck that. Seriously. My baby is sad! I want to know why! Maybe I can fix it? Surely there's something I can do to help?? But he doesn't want to tell me, and I know that he hates it when I ask, so all I can do is sit here helplessly, waiting for him to smile again, which might be on Friday after school. I hope.

Stupid autism. :(



Just in case you thought today's post wouldn't be even a little bit funny, here is a haiku that I wrote last night while seriously under the influence of muscle relaxers (which work really well, by the way, my back is much better). I actually considered making it today's post, but that's really pathetic; even for me!


Brain no worky good
Can't make fingers do blog post
Okay, Jill sleep now



Wednesday, January 4, 2012

These are some things they don't tell you

Child 2 is going to be 7 in July; this means I haven't been pregnant for 6 1/2 years (see what I just did there? I know, you're blown away by my math skills, but it's okay. I am, literally, a professional, so don't try this at home, kids!) For those of you who have never been pregnant, although I'd be willing to bet that's only about 1% of you who are reading this, the body undergoes a number of "changes" during pregnancy, in addition to the obvious baby growing thing, and sometimes those changes can be rather creative, in that they have absolutely fucking nothing to do with growing a baby. Sure, you're expecting that your ass and your boobs will grow to alarming proportions, but Restless Leg Syndrome? WTF does that have to do with pregnancy?

The worst part, though is what they really don't tell you in those books about what you're supposed to be expecting during this glorious time is that a lot of this shit never goes away. Yes, that's right, that pregnancy induced Bells Palsy you acquired 10 years ago? That shit'll last a lifetime, it will.

6 1/2 years I haven't been pregnant now. 6 1/2 years and I'm still dealing with my stupid body's pregnancy "changes." Please. Let me tell you about them.....

1. When I was preggo with Child 2 I developed "pregnancy induced carpal tunnel syndrome." Basically, for 6 months, the thumb on my left hand was completely numb. The whole time. On a good day. The rest of the time my thumb and index finger were tingling and painful. I would wake up in the night with my entire hand asleep, so I started wearing this fancy wrist brace at night. That was annoying, and I was having enough trouble sleeping what with the enormous fucking baby I was growing, so I eventually just said fuck it to the fancy wrist brace and suffered through it. I finally got the feeling back in my thumb about 3 months post partum, however about once a year since then, it will randomly come back for no reason that I can figure, last a month or so and then randomly go away for also no reason I can figure. I will also wake up in the middle of the night with my hand completely asleep. It's happening right now. I'm wearing the fancy wrist brace again. :(

2. It's to be expected that when you have an enormous growth pressing on your bladder and cervix from the inside, and then when you shove said growth out of your glory hole, you're going to pee a little bit at unwanted time. Unwanted meaning laughing, coughing, sneezing.... breathing. Times like that. What is NOT to be expected is that this shit is still happening 6 1/2 years later!!! I've trained myself very well to CROSS MY LEGS when I feel a sneeze or a cough coming on, but I'm not always able to. Like that time I sneezed while I was getting out of my car and I had to get back in my car, drive home and change my pants. :(

3. I'll put this one simply: Before children my feet were a size 9. After children my feet are a size 10.

4. When I was preggo with Child 1, I don't know exactly how it happened but at some point I turned wrong or something and this spot on my back totally seized up. It was horrible. I was so fucking front heavy, so it makes sense, but it made walking and sometimes talking pretty much impossible. I'd be standing there having a conversation and suddenly I wouldHHHNNNNNNNNNNNNNNNNNN get this horrible back spasmmmMMMMMMMMMMMHHHHHHHHMMMMMMMMMMMM and make these crazy sounds because it just hurt so fucking much. Luckily (?) I ended up on bedrest the last 5 weeks, and nothing will fix an aching back more than 5 weeks of lying on your left side, amiright??? Pregnancy #2 came and went with no back issues, and then about 3 years ago.... SEVEN years after it first happened... I was vacuuming... fucking vacuuming... and the exact same spot seized up producing the exact same resultsHHHHHHHHHNNNNNNNNNNNNNNNNNNNNNNNNNN. I went to my doc and got some yummy pills because I didn't have the luxury of staying confined to my bed, and it eventually went away after about 2 weeks. The other night, though? I was filling up the bath for Child 2 and suddenly..... HHHHHHHNNNNNNNNNNNNNNNNNNNNNNNNNNNNNNNNNNNNNN, thus inspiring this post. Good thing I still had some of those pills left over....

So, it's basically like this...





(I feel it's important to add at this point that I am currently full of muscle relaxers, not to mention covered in Ben Gay, so if it seems like this post came to a sudden end, um....... *drool* At least I thought ahead and drew those pictures for you earlier!! zzzzzzzzz)



Tuesday, January 3, 2012

I love my online friends

I have the best online friends in the world. In fact, with a few exceptions, my online friends are better friends to me than pretty much anybody I can have a conversation with over coffee. (Exceptions: Cathryn, Lizzie and Emily. I want to mention their names, even though probably none of them will read this. Hubs doesn't count since he's required by law to be my friend).

If I go more than a few days without hearing from some of my online friends, I start missing them. How can you miss somebody you've never actually met? And there are people I have met whom I haven't heard from for months, and at this point I couldn't give a single shit if I ever actually hear from them again.

There are people I know in RL who only ever talk about themselves; how they are doing, what is going on with them and never even ask me how I am. And then there are people I know online who can tell by the tone of my tweets that there's something going on, and will text me to find out what it is. Just because you've sat in the same room with a person doesn't mean they're actually your friend. And the more I think about how wonderful you guys are online, the more it fucking pisses me off how much so many of the people I know in real life fucking suck. (except for the four I mention above. Okay, Hubs totally counts. Whatever.)

So, I'd like to turn that around in my brain, please, and instead of being angry and going off on a rant, I will make this an Online Friend Appreciation Post: I'm not going to mention names here because I'll probably leave people out and I don't want to make anybody sad, but I can think of at least 5 of you who are right now thinking "I wonder if she's talking about me?" and the answer is YES. YES I'M TALKING ABOUT YOU.

By the way, people: start thinking about the Great Twitter/Blogger Meetup of Some Time in the Spring of 2012.

Seriously.



Monday, January 2, 2012

Wacom tales







Wacom is the brand of tablet I got, fyi.