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. 


  1. I'm with you on all of that. Except the nurses and sometimes even doctors where I have taken my son look at me as though they are thinking "I'd get it out of him, you don't even know your own kid." I know it's not my imagination either. One time at the dentist office I was being stared at with disdain because I wouldn't make him open his mouth. He knows what he's doing, he knows they want his mouth open so he will not do it and the more upset those morons get the more determined he is to not obey. Hope your guy feels better soon!

    1. Shades of Oppositional Defiant Disorder there, bless your heart, I had/have a heck of a time dealing with that with a fully communicable child, I could not imagine dealing with that with a child that cannot communicate, at least not in a normal fashion. Hang in there, you are doing a great job, I am sure.

    2. the word retard mean that they developed later than expected, and just because the autistic kids can learn some things does not mean that the kid is not stupid or retarded because they are. I'm sure your kid might be nice some of them are, but some are mean little bastards. you are all just very protective mothers because you love your children which is ok, but that doesn't mean I'm going to stop calling people retarded that are retarded. and you said that they shouldn't feel like they're less of a person, well truth is they are less of a person & if the kid understands that then maybe he is becoming a little bit more intelligent. . but the truth is they won't understand it they might understand that people are using in a negative way but they don't understand things the way other people do, because they are retarded

  2. Yes. RSV in January like to have done me in. The pitiful gazing at me like, "fix it." Only I don't know what hurts. The fear of the stomach- I can do sick, just not the stomach. The High fevers and having to research each medicine to see if it was ok for her to take with the new anti seizure meds. Plus, I seem to be more emotionally invested in number four than the first three. For some reason her inability to communicate it all makes it harder. The lack of sleep only adds a whole new level of crazy. Praying tomorrow is better.

  3. Here's hoping for a very speedy recovery!! PEACE

  4. oh hun all I could do is cry with you! Id laugh but seriously that post is EXACTLY where I am today! Doing the Dr dance, doing the running to the toilet to 'just miss out'. Dr wanted a sample, ofcourse kiddo couldnt produce at the surgery, but of course he could cover the entire back seat on the way home. grossss!

    enjoy your fries, Im buying shares in a coffee shop I think :)

  5. I'm so sorry for your sleepless night and sick kiddo. I hope he feels better soon! I want to thank you again for your blog... I know it sounds silly to say that, but I'm a special education teacher... As teachers we sometimes like to think we know what goes on at home with our students and their parents. But, we don't. Yes, we teach, love, and take care of kids with disabilities for 8 hours day... but then we go home and have hours to not worry about tummy aches, feeding, picture symbols, giving medicine, or tantrums. Your blog is refreshing and a good reminder of how hard of a night/day parents of my students may have had. I truly enjoy reading your posts.

  6. I know what you mean, it hurts to not understand what is going on with your own child. I hate when I feel like that and hate to see my child in pain or sick and not be able to help. I hope he gets better soon and that you get some rest.

  7. Aaaahhhhhh, I am so sorry, you have to go through that,I do hope he is feeling better today, but I am sure that as with not knowing when he is sick or not feeling well, it must be just as hard to know if he is feeling better. One small consolation, my "normal as can be" son when he was little KNEW how to communicate he was not feeling well, yet inevitably I ended up with puke, on the cough, the carpet, in my truck, because he could not tell me that he was about to puke. I swear he was 10 years old before I got the "mom I have rotten egg burps", which usually meant he was about to puke. Hang in there hunny, I am sure you are doing an EXCELLENT job as a mother, God, must have known you like puzzles, because he sent you a life long one!!!

  8. Feel better soon Kiddo!!! And Mama, I hope you can get some rest! I know I mostly view autism as sunshine and rainbows (that probably annoys the hell out of some) but I hear ya on this issue. Even though Liam is verbal, he too lacks the knowledge to say when something hurts. It's always a mystery for us too. And yes, I get so pissed when time and time again, he gets asked by the dr and nurse. He ALWAYS says, I'm fine, even when burning a 104 temp. He can't "feel" what is wrong with him. Ear infections? no pain, the ear drum ruptures, blood starts to leak from ear, then I know he had one and take him to the doc. So you're not alone, I know how frustrating it is. Just know I am here for you and I am hoping things get back to "normal" soon, whatever normal is :D <3

  9. Oh I feel you here. I Hate not knowing what's wrong with my kid when he's sick. Sometimes, he'll be a crabby, moody, angry, miserable kid for a day or two - then he wakes up coughing & congested. Ah-ha! He must have a cold, he probably had a sore throat when he was so miserable, b/c I know that's how all my colds start. But he can't tell me he has a sore throat. He can't tell me if anything hurts. He'll sometimes now tell me he has a boo-boo, which is usually just a little hangnail - but that's it. This morning, he stood up from the couch to play, got all wobbly looking & lay down on the couch, coughed & looked unwell. I raced to the dryer to grab a clean towel, sure he was about to puke. He even let me put the towel over his lap & the sofa, which he never does without a fight. I thought, he must be feeling awful. I asked him if he was okay, he said "no." But this means nothing, b/c when he's crabby, he says no to everything. Five minutes later, he got back up & was playing & smiling & totally fine for the rest of the day.
    I'm glad he wasn't sick, but ugh! For once, I thought I was prepared!

  10. Today, I was your husband. Escaping to work and leaving mine with the sick child. I totally get your being sick and tired. It is so hard when our child cannot communicate WHAT is wrong so we play a game of guess what could be wrong?

    I hope he feels better soon. And you get some rest. (Oh and I totally cracked up at the dogs. My pup is the same way, except last time I had to stop him from trying to clean up the puke himself!!)