Cancer... I Hate You

I've  been busy avoiding this post for the last few weeks, but it seems I have no choice.  The time has come.  We're facing some difficult challenges in the next few weeks.  Cancer.  I hate that word.

One of my favorite people on Glen's side of the family, his father (and truth be told, Glen's dad is my favorite person on his side of the family), has been diagnosed with stage 4 adenocarcinoma of the lungs.  No surgeon will operate on him, and he's lost so much weight...  I'm struggling with the decision to go home (B.C, two provinces away), knowing that I'll push everyone out of the way and fight my way to him to take care of him...  Upsetting everyone in my way, I'm sure.  I just don't trust anyone to do it right...  You know what I mean?  I'm like that with everything in my life.  And even though he's not my dad, I just want to do right by him.  I don't want to see him suffer, and I desperately want to help him...

I've tried to discuss this with Dayton, but he's just not old enough to understand.  I suppose that's a good thing.  Unfortunately, I'm a little testy...

So last night, my son tells me "I'm afraid of going on an airplane mamma."
"Babe, you've been on an airplane before, many times.  You loved the airplane rides!"
"I don't want to go on the plane."
"Babe, you're gonna love the plane ride, trust me."
"I said I'm not going on the plane."
"No, you said you don't want to go on the plane, and I'm telling you that we're going on the plane, you're going to have a good time flying, and I'll be right beside you."
"But what if the plane crashes?"
"Mamma's gonna wrap her arms around you, and if the plane crashes, it will hurt me, but you will survive."
"Whew.  OK."

And I'm thinking "OK?"  What do you mean "OK?"
"Babe, do you not care if I get hurt?"
"Yes, but I care more about me."
"Ouch."
"Only ouch for you, not for me, you promised."
Double ouch.  What the hell?  I'm really trying hard not to get hurt by his words, but man!  Seriously?!  Does he not love me at all?  Ugh!  He's just like his father!  No, wait, I don't mean that...  Is he like his father?  I've got bigger problems than I thought...

So, after booking the flights, I'm gonna be busy getting picture schedules ready (thank God for the iPod touch), social stories ready to get Dayton prepared for the change of scenery and different faces, different routine, two hour time difference...  what else am I forgetting?  There's so much to do!  These circumstances are difficult enough to deal with without the autism, I'm not sure how I'm gonna make it through this.  I wish I could take my respite worker with me, but someone's got to stay behind and look after the damn cat.  Ugh.  


I'm going to be greedy this time, and consider myself hugged, just this once.  Hope you all understand.

Lou

Autism Moms Have Stress Similar To Combat Soldiers

When I read this article, I honestly wasn't all that surprised...  http://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/

First of all, let's face it.  Those of us with kids with any kinds of special needs, especially the type that alters behavior such as ADHD, we just don't get to rest-period.  We're on alert 24/7, with no escape.  Even during work, we're attached to our cell phones, and I've even heard of parents having pagers especially in case their child's school calls to come and collect their babes.  Personally, I've experienced the side effects of this stress and ended up taking a medical leave in February due to to the stress of continually having Dayton's school call nearly on a daily basis.  Thank goodness this is not the case this year...  so far.  I keep waiting for the proverbial shoe to drop...  I pray again that I haven't jinxed myself in this post, but it seems Dayton's teacher 'gets him', and so does his educational assistant.

I remember a time where I had an alarms system installed not to keep intruders out of my home, but to alert me when my babe tried to escape in the middle of the night.  Why he would try to escape me makes no sense...  I mean, I'm a gorgeous babe I tell you!  And I'm a super cool mom, always hugging and squeezing and kissing my baby right in front of his buddies.  'Cuz I'm cool like that and that's how I roll!

I did find it interesting that the article is titled "Autism Mom's" and there is no mention of "fathers."  I have met (via facebook and Autism Diva Help) two fathers who are very much involved with their children.  One of them is actually a single parent, who also is taking care of his two nieces!  God bless him, as two of the children are...  wait for it...  drum roll please...  TODDLERS!!!  It takes a very, very special man to undertake such a responsibility.  How many fathers are single parents, never mind taking care of their nieces on top of it, with two girl on the autism spectrum?  I can hardly wait to meet this dad in person!  He makes me ashamed for whining of my problems with one child...  Forget Superman or Batman...  This dad is my new favorite hero. 

"researchers say that parents need better respite options and flexibility from their employers..."  Yes, wouldn't that be nice.  Unfortunately, I don't see employers bending over backwards to make accommodations for parents with special needs kids.  They have a business to run, and time is money.  Missed time at work equates to loss of revenue not only to the parent, but to the employer as well.  And as far as respite goes...  I've been on a waiting list for two years now.  If I can't find a respite worker of my own, I go without a break, and so does Dayton.  Lets not kid ourselves...  the kid desperately needs a break from me.  As "cool" of a mom as I am, it appears that my little man thinks I'm "embarrassing."  Like when I expect a hug and a kiss before he boards the bus to go to school, dressed in my jammies and house coat, with my hair in curlers...  Then running after the bus screaming "mamma loves you baby!!!" and all this is on a good day!  I'm not going to describe myself on bad days like the past few weeks where I was sick with the flu...  It's just not pretty.  The run behind the bus resembles more of a zombie dragging its sorry carcass...  You know things are bad when your nine year old demands you "put your face on" before picking him up from the bus when he gets home from school...  

I wonder if this is what Charlie-Anne (my step daughter) referrs to as me being "over protective..."  Meh.


Consider yourselves hugged,

Lou

This Thanksgiving, I am Grateful For...

All I can say is THANK YOU LORD!!!  Thank you, thank you, thank you, thank you, thank you, thank you!!!  Did I say thank you?  Because I am one grateful mamma!

I've been so terribly sick this week, I think I need to go in and see a doctor.  I've been practically bed ridden, functioning long enough to keep Dayton safe, fed and smiling, that's about all I've been able to manage.  As soon as I get Dayton out to school, I end up back in bed.  As a result of this, I've had little to no energy to help Dayton study for his spelling test this week, and as I've mentioned in my previous post, I've felt terribly guilty...  But then, something happened.  Dare I say it out loud?  My babe is no longer a baby...  He's a boy.  I smart, responsible, young boy...

Friday came and I dreaded picking Dayton up after school.  I honestly didn't think he would do well on his spelling test, and that he would come home crushed.  Prior to this flu I'm battling now, we would spend at least an hour memorizing five words...  An hour of tears and frustration every evening. 

My babe, sorry, young boy came strutting off the bus with a huge grin on his face.  "Mamma, I got an A, not an A+, but I got an A."
"Huh?  You got ten out of ten right on your spelling test?"
"No, but I got an A."
"Huh?"
"I did good mamma!"
"Show me babe."
And he did.  Boy did he ever.  The boy got eight out of ten words right.  Seriously?!  Holly crap!!!  My babe (OK, so it's gonna take a bit to get used to not calling him a babe anymore) done good!!!  Without my help!  WOW!!!

I don't know what's happened, I mean this is a kid who couldn't read or write last year, other than his name.  He had some sight words, don't get me wrong, he had some words memorized, but he never spelled a word in his life!  And here he is, doing it without me!!!

So, this Thanksgiving, I am thankful to our heavenly father for hearing my prayers.  Thank you Lord for giving my son the chance to learn.  Thank you for giving us a teacher that cares.

Now let's talk about my health...



Consider yourselves hugged, and have a fantastic Thanksgiving day. 

Lou

Don't Cha Wish Your Girlfriend Was Fat Like Me? Don't Cha Wish Your Girlfriend Liked KFC? Don't Cha...

Ahh yes...  at its finest!  A mom came up on facebook telling us how her son this morning heard the new song by lmfao, "I'm sexy and I know it" on the radio, then proceeded to repeatedly sing this one line for an hour.  Made me choke on my coffee, remembering some of Dayton's finest moments.

For those of you not familiar with the term "echolalia," it is the automatic repetition of vocalizations made by another person.  Echolalia is a common thread with kids on the autism spectrum.  The repetition can happen once or last for hours.  Typically done a the most inopportune time.  Sometimes embarrassing, but mostly funny, at least with Dayton.

Scene 1:  Dayton just heard the song Don't Cha by the Pussycat Dolls.  You know the one:  "Don't Cha wish your girlfriend was hot like me, don't cha wish your girlfriend was a freak like me, don't cha, don't cha..."  Ahhh yes...  He liked the song so much, he memorized the above verse just by hearing it once.  Dayton kept singing the verse over and over and over again...  Oh my God!!!  What if he sings it in front of the boys at school?  What will they think?  They're gonna make fun of him and call him gay, I just know it.  How the heck do I combat this?!

Here's what quick thinkin' mamma came up with and started singing...  "Don't cha wish your boyfriend was built like me, don't cha wish your boyfriend liked KFC, don't cha, don't cha." 

I got a few giggles from Dayton, and pretty soon he joined in with me.  Whew!  Close call!!!

Scene 2:  Remember Aqua, and their song Barbie Girl?  Oh boy oh boy...  I mean, how could you not memorize the lines of that song?  It's so much fun!  And the tune is catchy, geared towards kids, but not really meant for their ears.  Dayton:  "I'm a Barbie girl, in the Barbie world, life in plastic, it's fantastic!  You can brush my hair, undress me everywhere..."  OH MY GOD!!!  Dayton was only five at this time, so no school bullies to worry about.  But I couldn't take him anywhere for a while.  Quick thinking mamma wasn't smart enough to come up with anything.  Furthermore, he had JUST started talking!!!  All this time begging him to talk, I wasn't about to tell him to stop!!!  Ugh!

Scene 3:  My all time favorite.  This was bound to come to light, so you may as well all hear it from me.  I have a nasty habit.  I am a smoker.  There, I admitted it.  I enjoy a cigarette.  Benson and Hedges Deluxe, 100's.  Ma'bad.  Far from perfect me is.  And I like to eat, A LOT.  I don't like to exercise, which is why the first thought to Dayton's Scene 1 that came to me was "Don't cha wish your girlfriend was fat like me, don't cha wish your girlfriend liked KFC, don't cha..."  But that still wouldn't fix HIS problem.  Anyways...  I'm a smoker, not a heavy one (oooh, no pun intended, bazinga!), but one none the less.

Dayton and I found a TV show we both enjoyed watching together called The Big Bang Theory.  You must have heard of it, it's freaking hilarious!  I swear Sheldon has asperger's, and he totally reminds me of Dayton.  Dayton's made a connection with this character and hangs on every word he says.  For those of you that have seen the show, do you remember the episode where Sheldon has to hold a secret for Penny?  The one where Penny lies to Leonard, telling him she attended a community college because she wanted him to think she was smart?  And then Sheldon not being able to keep a secret, takes cold medication to knock himself out because he can't sleep.  Well, in this episode he was so medicated, he uttered to Leonard:  "Mamma smokes in the car, Jesus is OK with it, but don't tell dad." 

Just at this time a law was passed making it illegal to smoke in your car with a child in the car with you.  Not that I ever thought it was a good idea to do it in the first place, law or not.

We're sitting at the supper table with friends and family and all of a sudden, completely out of context, Dayton says:  "Mamma smokes in the car, Jesus is OK with it, but don't tell dad."  The table goes silent.  Dayton repeats himeself again, and again, and again, and again...  Everyone looks at me without saying a word.  All I can say is thank God for PVR's.  If you don't have one and your child gets hung up on echolalia, you definitely have to get one and KEEP THE RECORDINGS!

I ran to the TV, found the episode and played it for everyone.  We all had a good laugh, tears of relief spilling down my face.  Whew!



Consider yourselves hugged,

Lou

Top 10 Snappy Answers To Annoying Comments About Autism

I'm too sick to be blogging right now, but felt so guilty for neglecting the blog, I thought I should dig this one out from my facebook account.  Someone had sent it to me a while back, so I can't take credit for it, but it's a good laugh!  I hope you enjoy it as much as I do.

If you're a parent with a child on the spectrum, you've probably responded to the same annoying remarks and questions a thousand times. Here's a handy list of responses that...  you'll probably never use out loud (but are fun to imagine using)!

1. He can’t be autistic -- he can talk! (or make eye contact, smile, engage)
And yet, amazingly, he’s still autistic! Y’see, autism is a spectrum disorder, and that means …

2. Oh, she must be SO good at math! (or science or music)
Actually, her great talent is in memorizing and reciting lines from Sponge Bob videos! (Or those annoying Thomas the Tank Engine songs!)

3. All he needs is more discipline, and he’ll get the message.
Yup, it’s true -- if you give a child enough time outs, he’ll just stop being autistic. And if I speak French to you loudly enough, you’ll become fluent!

4. You poor thing, it must be so upsetting to have a child with a disability.
Yes, it can be hard. And pity really helps me to get through the day and feel better about myself and my child. So…  thanks so much!

5. Will he be able to go to college (or get married or hold down a job)?
Hm. Good question. By the way, has your daughter’s divorce been finalized yet? And I’m so sorry to hear that your son was recently laid off from his job…

6. I have a friend whose child was autistic, and she cured him!
Wow! So I guess she’s enjoying the millions she made after figuring out how to cure autism? I bet her second home is a yacht!

7. If she can’t behave properly, you shouldn’t BRING her to the grocery store!
Wow -- that would be great. Should I fax you my grocery list, or send it by email? I’ll really enjoy the delivery service!

8. We can’t include him in typical classes, it wouldn’t be fair to the other kids.
Hm, that’s an interesting perspective. So I guess you have a pretty big endowment to pay for all the law suits? That must be great!

9. We can’t accept her at our school because she doesn’t have a learning disability
Ohhhh… what a shame! Oh, wait, look, she’s suddenly developed dyslexia! Can she come to your school now?

10. You should make more time for yourself!
You’re so right! So will you be babysitting tonight or tomorrow night?


Courtesy Lisa Jo Rudy's About.com blog. About.com is a part of the New York Times Company.

Soooooo Sick...

Ugh.  Flu season struck early in my home.  It seems as though since the first school day of this year, I've been spending my day time hours popping cold medications, knocking back DayQuil shooters like a morning alcoholic and taking random naps.   Unfortunately, I've developed another horrible habit...  My sinuses have become so congested, I'm beyond Kleenex and steaming showers...  I need a plumber's snake.  Maybe I'll just stick to alternating between the Drixoral and Otravin nasal sprays...  Seems a bit less dangerous.  Yes, I confess, I've become a nasal spray junkie.  I love my Drixoral nasal spray, and get down right irritated and itchy if I can't find the bottle for my next hit.  Who said being sick couldn't be fun?

My afternoons are reserved for Dayton.  Getting him home from the bus after school is always fun.  Dayton doesn't care that mom's sick, it doesn't even phase him that I am so hot, I wear my tee-shirt and shorts outside in the mornings while he's bundled up in his sweater, jeans and a warm jacket.  By the time he gets home from school, I'd better be ready to rock and roll baby.  This was not the case yesterday...

My babe got off the bus, and he looked so sad!  He looked ready to cry!  When I asked him "what happened buddy," he just dropped his back pack and jacket, sat on the pavement and said "mamma, I'm sick.  My tummy hurts."

I picked my babe up off the pavement and gave him a piggy back ride back home.  After settling him on the couch with his cat, I ran back outside to get his jacket and back pack.  By the time I got back, Dayton was begging for "medicine mamma...  Make it go away."  My poor baby!

I held and rocked my baby, cuddled him tight to me and watched cartoons.  I'm a cuddly kind of gal, and I relished every moment of the cuddles.  We didn't even look at his back pack.  Didn't do homework, didn't study our spelling words for Friday's test.  We just 'hung out' and cuddled.  And it felt sooooooooo good!!!

For those of you with kids on the autism spectrum, you know what I'm talking about.  When do we ever get to cuddle with our kids?  For those of you with kids not on the spectrum, let me tell you.  Almost NEVER.  Almost.

The only time Dayton allows me to cuddle with him is when he's sick.  He really doesn't feel well if he sits beside me long enough for me to wrap my arms around him.  These moments are so rare!  As a mother, I want to cuddle with my baby, but my baby doesn't really care to cuddle back with me.  So, I steal these moments with my son, and while I don't wish harm to my babe, don't want him to be sick, I also cherish the moment of intimacy with him.  Does this make me a bad mom?  I hope and I pray not.

Of course, being born a woman and a Catholic, I didn't stand a chance...  I feel guilty, not only for enjoying my son finally cuddling with me on account of his having a sore tummy, but not doing his homework, and I cat breed true by doze.  Today doesn't look much better.  Ugh.  Oooh, I know, a good shot of DayQuil, a squirt of Drixoral and a nice nap will make it all better!  Oh, and maybe a little gravol to stop today's visitor, Mr. Nausea...


Consider yourselves hugged,

Lou

A Woman's Week At The Gym

Yes, I'm afraid this post has nothing to do with autism at all.  I had read this a long time ago, and found it in my notes on facebook, and thought it fitting to share.  I have gained way too much weight since my tango with the kidney stone, and now it's time to get rid of the weight.  I hate exercise.  I mean I really, really, really hate exercise, and I really, really, really love to eat, except for anything healthy...  So, I need a good laugh to keep me going.  Hope this puts a smile on your face for the day... 

A WOMAN'S WEEK AT THE GYM - Oh so true

This is dedicated to everyone who ever attempted to get into a regular workout routine.


Dear Diary,
For my birthday this year, my Husband (the dear) purchased a week of personal training at the local health club for me.

Although I am still in great shape since being a high school football cheerleader 43 years ago, I decided it would be a good idea to go ahead and give it a try.

I called the club and made my reservations with a personal trainer named Christo, who identified himself as a 26-year-old aerobics instructor and model for athletic clothing and swim wear.
My husband seemed pleased with my enthusiasm to get started! The club encouraged me to keep a diary to chart my progress.
________________________________
MONDAY:
Started my day at 6:00 a.m. Tough to get out of bed, but found it was well worth it when I arrived at the health club to find Christo waiting for me. He is something of a Greek god - with blond hair, dancing eyes and a dazzling white smile. Woo Hoo!!

Christo gave me a tour and showed me the machines. I enjoyed watching the skilful way in which he conducted his aerobics class after my workout today. Very inspiring!
Christo was encouraging as I did my sit-ups, although my gut was already aching from holding it in the whole time he was around. This is going to be a FANTASTIC week-!!
________________________________
TUESDAY:
I drank a whole pot of coffee, but I finally made it out the door. Christo made me lie on my back and push a heavy iron bar into the air then he put weights on it! My legs were a little wobbly on the treadmill, but I made the full mile. His rewarding smile made it all worthwhile. I feel GREAT-!! It's a whole new life for me.
_______________________________
WEDNESDAY:
The only way I can brush my teeth is by laying the toothbrush on the counter and moving my mouth back and forth over it. I believe I have a hernia in both pectorals. Driving was OK as long as I didn't try to steer or stop. I parked on top of a GEO in the club parking lot.

Christo was impatient with me, insisting that my screams bothered other club members. His voice is a little too perky for that early in the morning and when he scolds, he gets this nasally whine that is VERY annoying.
My chest hurt when I got on the treadmill, so Christo put me on the stair monster. Why the he11 would anyone invent a machine to simulate an activity rendered obsolete by elevators? Christo told me it would help me get in shape and enjoy life. He said some other sh1t too.
_______________________________
THURSDAY:
A$$hole was waiting for me with his vampire-like teeth exposed as his thin, cruel lips were pulled back in a full snarl. I couldn't help being a half an hour late - it took me that long to tie my shoes.

He took me to work out with dumbbells. When he was not looking, I ran and hid in the restroom. He sent some skinny b1tch to find me.
Then, as punishment, he put me on the rowing machine -- which I sank.
_________________________________
FRIDAY:
I hate that bastard Christo more than any human being has ever hated any other human being in the history of the world. Stupid, skinny, anaemic, anorexic little aerobics instructor. If there was a part of my body I could move without unbearable pain, I would beat him with it.

Christo wanted me to work on my triceps. I don't have any triceps! And if you don't want dents in the floor, don't hand me the damn barbells or anything that weighs more than a sandwich.
The treadmill flung me off and I landed on a health and nutrition teacher. Why couldn't it have been someone softer, like the drama coach or the choir director?
________________________________
SATURDAY:
Satan left a message on my answering machine in his grating, shrilly voice wondering why I did not show up today. Just hearing his voice made me want to smash the machine with my planner; however, I lacked the strength to even use the TV remote and ended up catching eleven straight hours of the Weather Channel.
________________________________
SUNDAY:
I'm having the Church van pick me up for services today so I can go and thank GOD that this week is over. I will also pray that next year my husband will choose a gift for me that is fun -- like a root canal or a hysterectomy. I still say if God had wanted me to bend over, he would have sprinkled the floor with diamonds!!!


For those of you in the same boat as me, consider yourselves hugged!


Lou