Sunday, March 31, 2013

Still here

I missed a week!  I've been trying to give myself a break about that.   French Fry Inc. has been a hospital ward as of late.  So I should cut myself some slack but I know it's gonna make me feel better to write some stuff down after the past two weeks I have had.

Kiddo got sick, very sick.  Followed by my husband and then me.  All three of us in so much pain and fever.  If that wasn't enough drama, kiddo got better and the two adults in charge of him were both still sick we could barely see straight.   Not good.   Then we got slowly better but then my husband thought "Hey!  You know what would be a hoot?  Getting bilateral pneumonia!"  So he did that too and No honey, not so much a hoot for you or anyone else in here.  My hands are now raw from constant washing and I'm keeping the good people at Lysol in business.  All right already universe!  We have done the plagues times ten here.   Ease up would ya? 

Oh is everyone finally feeling a little bit better?   BOOM!  Easter break from school!  Good, cause you know those four days the kiddo was back for, that really wore him out.   Cut to the scene in two weeks time when they tell me "He seems a bit off of his routine"  Gee ya think?  D'uh.  :-)  Strangely enough his teacher wasn't open to the idea of having him stay at her house for the week.  I don't know why.  I would of sent him with food money. Geez. 

Here I am on Easter Sunday doing laundry I ignored for two weeks.  (we were reaching scary levels of no clean clothes.)  A week of no school ahead of me and a bunch of chores that went out the window during our virus whirlwind.  You know all those dinky little things you do every day in your home to make it run?  Well when you don't even do those, holy crap balls! My house is at that point I contemplate just lighting a match and walking away.  Let's see if I can get the kiddo to think cleaning out the bathroom sink is fun.  Lord knows he gives me enough work around that toilet with his lack of aim.  Here's a rag.  Go to work.  Oh is this boring to you?  Don't worry.  Back to school for you in a week and then I will keep all these chores to myself again. 

Till then I will take it each day.  Just get me to bedtime will be my mantra.

Monday, March 18, 2013

Sick and tired of sick and tired.

Cliche? Yes but I'm much to tired to come up with anything better than that.  ASD parents, you feel me?

The kiddo came down with some sort mystery virus on Saturday and it is still lingering all these days later. Now that I think about it, pretty much every illness he has had can be described as "mystery". Why? Because I never know what's going on with him.  Not really.  Communication issues never become more alarming than when your kiddo can't even tell you "hey I don't feel good".  I usually get a glaringly oblivious sign like him up chucking down my shirt.  When I'm cleaning chunks out my bra, then I figure out something is up.   There is no warning bells at all with my kiddo.  My husband was the one that got the barf baptism last night at 2:30am (YES!) on his arm as kiddo slept across him.  (Yeah he still crawls nightly into our bed.  Please, I will deal with that battle another day)

So there we were, scrambling in the middle of the night to fix the collateral damage that a sick kid can bring.   Sheets to be changed, pajamas, washing various body parts.   Two dogs at our feet the whole time going "What?  We're up now?  Really?  This seems unusual but while you're up, throw us a milk bone would ya?"  Finally settled all parties down and I stare at the ceiling in the dark waiting for my son to get sick again because he will.   I mean all moms know it won't be just the once.   So no point in falling asleep when I can just sit there and worry about when he will do it next.   Except he doesn't.   He sleeps.  I don't.   I'm really sick and tired of the sleep I do not allow myself to take.

I'm no fool.  I know my husband was more than happy to be going to work today.   The kiddo sick day versus tough day at the office?   Yeah, if I could of left, I would of too.   I don't blame him if he enjoyed his day off of sick duty.  He was sick and tired of us. 

We start the pattern of crying, moaning, running, jumping, crashing and sleeping any and everywhere.  I get out PEC pictures.  I take out sick social stories.   We talk and talk and talk about being sick.   I model taking my temperature.  I beg and plead that this kiddo can at least identify the body part bothering him.   He tells me he is happy, he sticks to his making friendly conversation scripts.   I'm really sick and tired of scripted conversations on days like today.

We go to the doctor's because I really don't have a clue what's wrong.  I am hoping maybe he'll see something like an ear infection or whatnot.  Something that has a set treatment and a duration I am familiar with.   Nothing.  Just a run of the mill virus.  Of course I did the song and dance with both the nurse and doctor of explaining "No I have no idea what hurts on him. See if he'll tell you."  I'm really sick and tired of having to explain that every sick visit we go.  Hello, you're in the medical community.  The communication issues and autism, you ought to be on top of by now.   Here, make a note in the chart. "Mother will look like she's about to cut a bitch if I ask why she doesn't know what's bothering her son".

I am sick and tired of playing the "slip him a mickey" shuffle with any medication.  I find the more doses we go through, the more on to me he is.  No he won't take pills.  Chewable or not.  Liquid only if it's mixed with juice.   Even then it must be served in a juice box, ice cold.  He has another medication he takes for anxiety that we must get in.  The levels have to stay constant.   That becomes additional stress.

I am sick and tired of not being to know what is bothering my child.  Days like today really get under my skin.  I'm his mom.  I ought to know and I don't and that just sucks. A thousand and one different ways my son has taught me how to communicate differently but when it comes to illness, we just hit a wall.  He can't tell me and I cannot read his mind.  He does not understand my pleas to rest and be still when he's crawling on the couch to jump on it.   I do not know what he means when he randomly screeches and grabs my hand to press his chin into it. 

All I can do is hope that he will sleep well tonight and tomorrow might be better.   That maybe by the end of the week I can have a nice scripted conversation over a side of fries.   I will never be sick and tired of that. 

Monday, March 11, 2013

IEP recap!


Actually, in all fairness, this was probably one of those most successful IEP's we have had for the kiddo like EVER!  Either we got lucky or we're just getting better at them.  :-)  I suspect me screaming at the last one probably helped for this one.  So does that mean I'm setting ourselves up for next year to suck?  Aw crap I hadn't thought of that till now.  Nah I can't think like that.  I got to keep my head in the game.  

So a basic recap. For the first time in five years the OT was present!  Not only was this new gal there. She was there ON HER DAY OFF!  Big props.  I appreciated that.  Although I had worn flats and was ready to take off my earrings at a moments notice to rumble.   Didn't need to!  How awesome! She has started typing with him.  She gave me the links and passwords to the online program so we can do it at home too.  Then she said something that almost made me kiss her on the mouth.  "Typing,computers, it's where this world is going anyway.  Let's build on it."  Hot Damn woman!  You get it!  That turns me on! 

Four years after we fought to have a behavior plan put in, we were finally able to take it out due to the best reason. He isn't having the behaviors anymore!  Strangely enough, the whiny meltdowns still happen in this house. So work in progress here but at least in public, he's doing okay.  Got to take one with the other.  (and before you start leaving comments asking if we are doing the same things here as they do in school for them, YES!)  I know some of you just get it.   They are perfect in school and just melt the HELL down once they come home.   I guess he feels more at ease with flipping his lid here?  I'm not sure but seeing as we all kind of put on a public face of politeness, really, what's the difference?  Whatever, it's gotten better.  It will hopefully continue to do so. 

The one sort of bad news is next year he's gonna get a new teacher.  Now he's had this one for two years now and in these past two years he has made huge progress.  We're talking a kid who used to come up with a daily excuse of why he couldn't go to school to one who gets bummed when it's a week long break.  She just gets my kid.   Hey maybe the upside is once he is no longer under her care I can take that gal out for a much deserved round of drinks.  Lord knows she's earned it.   I guess I got to suck it up buttercup but I'd be lying if I said I didn't need a good social story to accept the change.   I am floored by this woman who could see in my kiddo all the awesome I see everyday in him.  There are no words to express how that makes me feel. 

I did get one little dig into them.  Couldn't let them get off Scott free could I?  With the handwriting thing, the goal has been to get him to do print his name.   I pointed out to them "Hey, if he's only going to learn one thing with handwriting, shouldn't it be signing his name in cursive script? And it wouldn't it be easier for him.  Seeing as it's one flowing movement and half his handwriting problem is taking a pencil off and on the page?"  The look on their faces was kind of priceless. Gobsmacked!  Nobody thought of this till then?  Other almost 9 years old are learning this skill.  Why shouldn't he?

 He started cursive today.  Guess who's kicking ass in it?  :-) Which is good because Mama's handwriting is terrible.  Perhaps he can give me a few tips.

Tuesday, March 5, 2013

"I didn't mean your kid."

Really?  Who's kid did you mean?   When you let the word "retard" or the phrase "that's just retarded" fly out of your mouth.  I shouldn't be upset because you didn't mean my kid.

Listen up.  It's 2013.  Get hip with the lingo. The "R" word is no longer cool.  In my mind, long before I even had the kiddo, it wasn't cool.  Buy a thesaurus.  Find another word.

Stop using this term to equate the neurological make up of my kid to when you don't like something.  Don't use this term when you or someone else makes a mistake.  My kiddo is NOT a mistake.

You are equating an entire population of people to something negative.  You probably know better than to use the "n" word.  Or the "f" word.  So why not this one?  Maybe because you think my son won't understand and call you out.  Guess what?  I understand and I have no problem calling you out on it.  And the whole, "oh they won't catch on" Yeah, I call bullshit on that too.   My son might not catch on at first but upon hearing it again and again and using that same tone, he will start to understand what it means.  He will start to think his very existence is something bad.

I get it that some people don't know or didn't mean it.  I'm 38.  I'm in that generation where we started figuring out that using a medical condition as a put down or a punch line is really not cool.  Some of us even take it one step further and actively call people out on it when they hear it used.  I know there are even some people who just don't use it around me because they know I will tear them a new one but probably let it slip out in other places.  If you can make the effort not to do it around a certain person, you can do it for everyone else too.  Get your act together.  We owe it to our kids.  No matter what their neurology.

March 6th is Spread the word to end the word day.   Take the pledge at   Share this on facebook.   Talk to people about it.   Explain it as this.  Why would you want an entire population of people to feel like they are less than?

If they say they didn't mean your kid, remind them they are talking about some one's kid.  Some one's pride and joy.  Stick up for all kids.  Not just the ones you know.