Sunday, December 30, 2012

Autism ala Les Miserables

No, I don't think any of the characters were on the spectrum.  No wait a minute. That Inspector Javert guy was kind of obsessing a bit on Jean Valjean.  Like dude, it's like 20 something years gone by since he skipped parole over stolen bread.  Let it go. 

Anyway, there is a point to this post.  The kiddo has been doing pretty good over this long break.  I can't say that this time off of the routine has been that bad.  Other than being so far up my bum I swear he's lounging on my kidneys.  Honestly though, I saw that as a good thing that he was craving some sort of interaction and not off is his own head somewhere. 

My mom offered to take him for the afternoon so Daddy Fry and I could go catch a movie.  I guess by now you figured out we saw Les Miserables. (side note, IT WAS FANTASTIC!)  He had a good time as always at Granny's and ate her out of house and home.  Further convincing her that we never feed him.  I then suggested grabbing an early bird dinner at Applebee's.  He happily went and ate all his fries and his fathers.  (Hey honey, you ever notice that's why I order onion rings? Stops the fry thievery)

Got him home, got him showered and pajamaed up.  Thought, "Sweet!" and then ALL HELL BROKE LOOSE!  Frankly I still don't know the full how and why.  This boy melted down into an epic fit of rage.  The likes I have no seen since the pre Risperdone days.   I think he started to realize that even though he had an awesome day it still was not the usual routine.  He started in on a missed bike ride and that was it.  Into the zone of no return.  I thought we could ride it out.  Sometimes he's just got to scream.   Time outs galore.  We tagged each other out and took turns with him.  He was very aggressive towards my husband.  It finally got to a point after two hours of me looking at the husband and saying "Eff this.  He's going to bed"  Melatonin and more drama but dammit if Daddy didn't wrangle that boy off to dreamland. 

 While I'm listening to the last bits of screaming/protesting coming from the kiddo, I drive myself mad trying to figure out what the hell was it that set him off so bad.  Maybe it was this?  Or that?  Or WTF!?!?!  Like I said, could of been the bike ride that didn't happen but we've had to miss those before due to events or weather.  So I am left wondering once again if there was something we could of said or done differently that would of kept it from going there.  It can really break my heart sometimes not to be able to make whatever is making him so "Les Miserables" go away.  I'm a mom.  I'm suppose to make it better.  I'm suppose to hug him and reassure him but when he's like this, hugging is the last thing he wants.  In fact it makes it worse.  So my maternal instinct is of no use here.  There was no talking him down.  I just had to hope we would have a better day tomorrow. 

He woke up today extra early but it's par for the course.  Still a little pissy but was able to come round.   I gently encouraged my husband to go into the office to "catch up on work" but also I knew he could use the quiet time to decompress.  Hell, he earned it after getting the boy in bed.  So if he spent the time drinking coffee and checking Facebook, I don't blame him.  I would of done the same.  The boy seemed delighted to go to the supermarket with me and help.   We kept to the rest of the Sunday as per usual.  With the exception of setting up the Wii and having a grand old time bowling.  Not his usual Sunday afternoon activity but maybe today will be different.  Knock wood, so far, so good. 

I just jinxed myself by typing that didn't I?  When will I ever learn?

Thursday, December 27, 2012

Christmas Break is no break.

Hey there!  How's it going?  We survived yet another dooms day prediction of the end of the world and Christmas.  Way to go! Kind of proud of the kiddo.  It was a whirlwind of activity for a few days and he handled it better than most adults do.  Of course there was no sitting at the table to eat with everyone.  He continued his cocktail party style of dining.  A nibble here, run away, come back, repeat.  Predictably he was able to sit still long enough for dessert.  Behold the power of ice cream. 

Santa was good to the kiddo this year.  Some new DVDs of movies he's seen in the theater and liked but will now ignore for a few months until he warms up to the idea of viewing them.  Or I just shove one in the player in a fit of "oh my god I cannot watch Steve get stumped by a dog again!" And then he'll obsess on them.  I look forward to hearing some new key phrases repeated by him again and again.  Speech therapy by Disney Pixar for the win!

Our big gift to him was a desperate attempt on my part to get him something age appropriate, so we got the Wii.  (and to quote my dad, what does Wii stand for?  What is it? That's pretty funny right?)  In true fashion we still haven't set it up nor is he asking for us to do so.   Why?  Because darn it there's Mouse Trap to play with and when I say play with, I mean set up his own rules and just make the little ball go through the maze a thousand times in a row because that's what happened on some Baby Einstein video that he remembers from years ago.   So project goal for the weekend is to set up the new gaming system in hopes to teach turn taking and working on motor skills.   Also, so Mama can kick his butt in Just Dance. 

Off from school till next week.  It's Thursday now and part of me is like "oh we can make it.  That's not to long to go."  A few hiccups of no therapy this week.  Damn those therapists that actually want to spend time with their kids!  What about our needs?  Just kidding.  I'm used to it now but there is still a part of me that looks at things like Christmas break as anything BUT a break.  A kiddo that thrives on routine and a schedule written in stone isn't to keen on puttering around the house to much.   Maybe I should get him a pair of yoga pants in his size. Perhaps that would make him more relaxed like I am right now?   Maybe I can get him to fixate on doing laundry for us.  Seeing as he makes so much of it.  Can folding clothes become his new hobby?

So that's the long and short of it.  Daddy Fry is back at work.  Mama Fry is seriously earning that paycheck I don't get. :-)  If all else fails to entertain, I'll just take him out for another side of fries.

Friday, December 14, 2012

A letter to the new autism parent

Welcome to Club Spectrum!  You didn't want to be here.  Don't feel bad about that.  No one signs up for this gig.   Think of it this way, at least you now know what the Hell is going on.  Better than not knowing at all.  Mama Fry ain't no expert but I do have some tips that help you from going bat shit crazy. 

1)Pace yourself.  You are about to start a never ending marathon.  Know when to take a break.  Embrace the couch and some bad TV.  Or if you are one of those gym goers, do that.  Avid reader?  Go fire up that kindle or go old school and buy a few books.  You're going to have a lot of time in therapy waiting rooms.  Might as well enjoy reading some check your brain at the door novels.  Know it's okay to get absolutely nothing done on some days.  Or weeks.   

2) Get off the Internet.  It can scare the crap out of you. Seriously, stop playing Dr. Autism Google.  You're looking for the autism cure needle in a Internet haystack.  Step away from the search engine. 

3) Get on the Internet.  I know, opposite advice.  Here's the twist.  Get on social networking sites.  Talk to other parents.  Get to know them. Not just what they did to treat X Y and Z. You'll get a better understanding if those choices are right for you.  Autism can make parents feel very isolated. Sometimes it is hard to get out and network.  Facebook, Twitter, and online groups are awesome.  Mainly because when you are in the dark on your kid's iPad hoping like heck the melatonin will kick in soon, you can chat away.  (Don't you go Googling melatonin yet.  You read this all first buddy!) Autism parents/caregivers are always awake somewhere on the planet. 

4)Be prepared to hear a lot of advice you did not ask for.  Warning, it never ends. I find sarcasm and raising my eyebrows  over my glasses helps a lot. 

5) Respect your elders in the ASD world.  Now don't go taking their world as gospel but recognize what they do works for them.  You'll see why as you earn your stripes.  The kiddo is 8 and we've been dealing with all things autism since he was before 2. Trust me newb, what you are telling me to try, we've done. Seriously, do you really want to be the type of person I just described in item number 4?  Don't be that know it all parent out the gate. Remember they have been sleep deprived much longer than you. They will be quick to shut you down.

6) Accept the fact that you are going to try stuff that is totally not going to work.   That miracle thingie you just read about in a chat group won't do jack all for your kid.  Meanwhile every other kid who has, is thriving.  It's the luck of the draw with this folks.  You meet one kid with autism, you have only met one kid with autism.  Some cures/therapy/meds will be duds.

7) Autism is effing expensive.  So when Grandma or Uncle Frank wants to know what your lovey wants for their birthday, CASH IS KING!  Don't be afraid to ask for therapy and or lessons for something as gifts.   These folks care about you and your kid.  They'll be happy to know what they bought is actually getting used.   Not sitting around collecting dust.

8) Accept that some folks who buy gifts for your kid won't do the above.  You're going to get a lot of gifts that your kid won't even be remotely interested in.  They meant well.   They knew it was a hot toy.  Save it.  You never know.  Maybe in a year or two, they might like it.  Or donate it.  Regift it.  Return it for therapy cash.

9) Be open to doing stuff you think is ridiculous.  You really just don't know what your kid is going to respond too. Give it an honest college try before you realize if it's a hit or a miss.  This means diet, meds, therapy, supplements etc. Just try.

10) Take your kid out everywhere.  I'm serious.  It may be small trips at first but it is the best thing you can do.  You're teaching them coping skills.  Life happens.  People have to food shop, go to the bank, post office etc.  You would be doing it anyway if they didn't have autism. Know their limits of course.  Baby steps first.  Today, it's a trip to buy milk.  Another time, maybe it's a trip to the pet store and the library.  Life from now on will take military like planning. Warn them what's coming but go about your business.  They smell fear.  Seriously, the more panicked you are, they will turn that dial to "11".

11) Allow yourself a pity party.  Moan, cry, rant and rave and do it when you need too.  More than once.   Just remember you still have a kid that needs you.   So don't dwell in it to long.   If you find yourself doing it to far to frequently, know when to ask for help.  Be it from a partner, family member, friend, or doctor. Yes, this isn't what you planned but it's here.  So now what?  Exactly. 

This isn't about getting through it to an end point.  This is your life now.  This is your new normal.  I can't promise it will get easier.  You will just get better at dealing with it.  Be it through humor, prayer, yoga, crafting, blogging, or a thousand other escapism activities. You will do this.  You can do this.  Remember for as hard as you are working, so is your child.  So now and then, relax and just order another side of fries. 

Sunday, December 9, 2012

Autism, you're doing it wrong!

Or so I've been told.  A lot.  Lately.  Almost daily.  Can you tell I have some stuff to get off my chest?  Bear with me folks. This one is a rambling mess.

Since dipping my toe into the autism blogging waters boy can I just tell you how much my views on autism have changed?  Well not really.  More like my views on how folks view autism now range from "Wow that's a really interesting perspective." To the more extreme "WTF!?!?" On many occasion.

I knew opening up a door to my life to the World Wide Web that I was bound to hear some criticism. I get at.  Here's the thing.   I'm not an expert.  I'm just a mom with wifi and a smartphone.  Up till this, I kept my arse out of the autism warrior mom wars for completely selfish reasons.  I value what little sanity I have left.  I'm only trying to help one kid and one kid only.   MINE!

I get that some folks although well meaning just cannot stop themselves from telling me or another one of my fellow in the trenches with me parents how we are screwing up our kids.  I suspect if we were all just parents of neurotypical kids only, these folks would still be telling me how much therapy my kid is going to need because of me as an adult.  I know these people just exist.

Some are nothing but clueless shit stirrers.  You know it.  I know it.  They can paint that perfect picture of what they CLAIM to be doing.  Doesn't mean they are actually doing it.  Or if it is really working as well as they say.  It's really easy to put on the mask of the perfect parent hiding behind a computer screen.  I do find myself  rolling my eyes and trying like Hell to let it roll off my back.  To not take it personal.  It's really hard sometimes to not engage.  To not explain more than once why we do what we do.  I've ignored it as much as I could but yeah there are days I've had to break out the delete and block buttons.  (Not gonna lie.  Trying to figure out a way to build a real life "Ban" button.  Hurry up science!)

The Facebook page that is connected to this blog has exploded in a way I could of never of fathomed.
Even though I really didn't think it could ever grow like it has, I am so grateful it did! It's been so supportive to me to say in a quick status "Oh my god I want to slap Steve from Blues Clues!" and immediately I'll get a ton of comments from folks plotting the deaths of SpongeBob or Elmo.  Folks who get that their kid's quirks aren't so bad because they will be the first to admit they have their own. (I am so jealous of my son's weighted blanket).  People who know that when one of their kids has autism, the whole family has autism.  It's just a completely different way to live.

If I have learned anything from this experience, I'm living autism the way it's right for this family.   Just like everyone else is doing what works for them.   Even if I think it's nuts.  You can save yourself a lot of heartache if you stop panicking you're doing it wrong.  You probably are, in someone else's eyes. But who cares?  Is it working for you?  Then game on dude and order another side of fries.

Sunday, December 2, 2012

There's sick and then there's autism sick.

Like most things with the kiddo, even the simple yet miserable event of a cold is extra complicated/annoying/frustrating due autism.  Don't get me wrong.  I know any kid when they are sick are not fun to be around.  But allow me to explain/whine.

There is no "Mommy I don't feel good" coming from this kid.  Ever.  This is a kid who dropped a 12 pound bowling ball on his toe, breaking it, and kept on playing.  Is he gonna be able to stop and tell me he feels hot or his stomach hurts?  No, he's more of a visual kind of guy.  He'll tip me off by throwing up all over himself and then falling back asleep in it. (True story from the rota virus incident of '09).

There will be no taking of his temperature other than feeling the back of his neck and maybe if I'm lucky the ear thermometer. (Which I know is not accurate but you know how long it took him to tolerate that?!?!?  Yeah I'll use what I got).

I always knew I was really sick when my mom rolled the old 13 inch black and white TV into my room.  Mom's orders, stay in bed.  She used to really get serious taking my temp and my pulse.  That's when I knew I better stay still, sip my flat ginger ale and watch cartoons.  I have a son who will be running a 102 fever (I think) and will be running all over my house!  I will have to hide foods that I know are much to harsh for his sick tummy because he won't listen to reason that the B.R.A.T. Diet is his friend.   He has been known to barf while running.  Barfing freaks him out completely and only seems to rev him up even more.

Then let's add the fun of medication.  He won't take meds straight at all ever. I've resolved myself to that.  He knows I put his daily supplements and such in milk.  We've made that compromise.  But when he's sick, milk is the last thing he should be having.  So while feeling miserable I get to wrestle with him, trying to get some Tylenol in.   Of course wrestling/fighting/fussing usually leads to more running around up chucking.   I find my washing machine just sighs a lot when it seems me coming with another load of puke clothes.  I give that old girl a lot of work.

But this is the worst part of autism sick vs just sick.  He's gonna regress.  Something or things are going to get lost in the shuffle.  A typical kid will probably have a quiet day or two before they are fully back in the swing. My kid?  It could be a week.  Maybe more.  We'll see some skill lost.  It might take complete retraining to get it back.  If at all. Yes, he'll be happy to see that order routine back but he won't be fully on board with us again.   If anything, he's probably going to remember how when he was sick, I wouldn't let him go swimming while he was barfing and therefor I am the meanest mom ever.

This is one of those times I really lose my mind.  I'm his mom.  I'm suppose to make it better and I don't even fully know what's wrong to make better. Last night it was clear to us when he willingly skipped his whole nighttime routine to go to bed by 7 something was up.  I will now obsess on every sigh, sniffle and behavior for the next few days.

 After he was out like a light, the husband poured me a glass of wine.  Aka, "Mommy's meds". No, he did not have to fight me to drink it. :-)