Spring Breakage and Prayer Request

Once upon a time it was Spring in Southern Virginia.

 And then it wasn't.

But Spring Break came anyway, so the family prepared to go on a trip to Busch Gardens, Williamsburg.

On Easter Sunday I was worried about The Skink's cough, but luckily her doctor's office had a doctor in that morning. As we were planning on leaving for Busch Gardens the next day, I wanted to have her seen (and heard) before we left.

We went home with a prescription for amoxacillin for...     an ear infection. Doc didn't think the cough was anything to worry about.

So off we went on our wondrous spring break adventure to the land of many lands.

The first day, I attempted to put The Skink on some of the fun kiddie rides. No pictures. The kid was basically cursing me out the entire time for sticking her on a lame ride! So we asked her what ride she wanted to go on and she immediately pointed to the giant swirling swings of death. (Yeah - she takes after me like that.)

With more than a little trepidation, I stood in line with my tiny, 30 lb. kiddo and then helped her into one of the double swing seats so I could sit next to her and deal with any freak out she might engage in.

Her face lit up like a Christmas tree as the ride started, and she only became more excited as the swings went higher and faster. When the ride ended her face fell and she looked at me with big brown eyes and asked, "Again, please?"

So after what seemed like 27 rides on the swings, we finally talked her into trying something different.

The Battering Ram!

 
Can you see her? She's right in the center of the photo with Broadway's arm around her. Look at that smile!

Yup - that's my family!

Then on to the next fast ride...

I was a little worried because Broadway and the Hubbs were making the teacup spin like a cyclone. How did The Skink feel about it?

That's my girl!

After walking around the park for a while and taking in the many sights, the kids lobbied for a new pet.

I said, "No." 

The trip was fun, but The Skink's cough grew worse and worse, even though she was on antibiotics and getting two breathing treatments a day. So with no improvement to speak of, I took her to the doctor again last Wednesday after we were back in town.


Remember last year when The Skink was in the hospital for viral pneumonia... TWICE? Well...

I asked the doctor's office to put a "PulseOx" on The Skink to see what her oxygen sats were...

The doctor said he wouldn't call the ambulance if I promised to drive her straight to the hospital myself. (I cheated a little and swung by the house for some necessities like PJs, cows and my contact lens cleaner.)

After a brief stay in the ER, we were taken up to a room, and she has been there ever since. 

Sing with me now:
It's notfun to stay at the
Y...
M...
C......................................................... ........................ zzzzzzzzzzzzzzzzzzz 

On Thursday, a Patient Representative came to the room and asked The Skink what toys she would like to play with. Not wishing to bore the poor lady (or make her job too easy) The Skink got creative. She perked up and squealed, "A basketball!"

"You want a basketball in your hospital room?" the lady asked dubiously.
"Yup!"
"Do you like Barbie dolls?"
"Yeah, they're OK."
"Is there anything else you want?"
"YEAH! I want a BIG, BLACK... GORILLA!"
(Judging by the laughing, I don't think the Patient Representative was expecting that request.)
"Ummmmm... " (stifled laughter) "Uh... is there anything else I can get you?"
"Yeah!! I want a giant, brown bellybutton!"

(At which point everybody within ear-shot lost it completely... )

Much to our surprise, the Patient Representative reappeared in 5 minutes flat bearing a mini basketball, a Barbie doll and a BIG, BLACK... (plush) GORILLA!

I dunno... I was a little disappointed my kid didn't get her giant brown bellybutton... but then again, can you even imagine what my dryer's lint trap would look like if I ever had to wash the thing?

After 2 days in the same clothes, the Hubbs was kind enough to trade places with me on Friday night. I came home and promptly came down with what I  believe to be strep throat, meaning there is no way I can go back to the hospital and risk exposing other children in the ward. At least not until I have been on antibiotics for at least 24 hours... but my doctor isn't open until Monday!

This morning (Sunday, April 14th) they did another x-ray to see what progress was being made, and hopefully answer why The Skinks O2 sats were still lousy. Much to our dismay, her pneumonia has gotten worse!

How can it be worse? Why? My poor baby!

So - I'm stuck at home feeling lousy and unable to go see my sweet Skink who is in the hospital.

"Stressed?" you ask?

Yes -

...but thankfully I live on a beautiful farm and I have chickens. Broadway, Iraq and I laid in the warm grass today and we agreed that chickens make everything better... I mean not like a cure, but like... their antics and cuteness help take the edge off.

Yeah - I do know I'm nuts. Thanks for asking!

So in the morning I'll get my kiddos off to school, feed my landlord's horses and run off to the doctor to verify that my neck is not actually transforming into a tree stump, but is just inflamed due to a nasty Strep infection, get a prescription, drop off clean clothes for my Hubby and The Skink, buy chicken feed, run by the grocery store and try to be home in time for the other two kids to arrive home from school.

I'm sorry? What is this rest you speak of, and where is it to be found?

So if you have a moment, let me please ask a favor. If you pray, please send up a prayer for my sweet Skink. If you send healing thoughts, they are welcome and if you are a finger crosser, have fun typing 'cause I'm going to ask you keep your digits entwined until my baby is better.

Thank you in advance!

*

The Letter I Wrote To My Daughter's Principal

Dear Mrs. X et al,

What can one frazzled mom say aside from, “Yeah – she did it again?”

As far as we know, she got both the lotion and the ear buds from different students on the bus. She claims she can’t remember where she got the change, leaving us to wonder if she might have taken it from one of the “Men In Black” considering her apparent loss of recollection. (Or perhaps aliens took the change and planted it in our daughter’s sock drawer… we may never know!)

Although it has occurred to us that she may have been a packrat in her last life and simply suffers from flash-backs to her former rodent state, Iraq’s psychiatrist tells us that her kleptomania falls under the OCD behaviors… that fall under her diagnosis of Asperger’s. Of course to us it all feels like falling under a cement truck. The good news is that the American Psychiatric Association is removing the “Asperger’s” diagnosis from the new revision of the diagnostic manual, meaning our daughter will no longer have the condition.

(The bad news is that this just makes her diagnosis “Autism.”)

           

At any rate, we are currently returning afore-mentioned contraband to you. Feel free to punish our daughter as you see fit… (Does the school have a dungeon? She’s a little short for her age so perhaps “The Rack” would be a good choice – and far less intrusive than thumb screws when it comes to writing assignments.) If you decide to turn her in to the police, just tell them you found her as a wandering street urchin…  or a sea urchin… whatever. It will keep them guessing for long enough to give us all a few hours off.

Please accept our deepest apologies for our daughter’s behavior. She has been doing this since she was 2 years of age and has continued stealing regardless of being subjected to every form of punishment suggested by at least 10 mental health specialists as well as some disdained grocery store patrons (who invariably started their suggestion with, “If that were my kid I would…!” ). To date, nobody has suggested The Rack or thumb screws.

…I’ll be checking eBay.

Thank you for understanding… or for not understanding but continuing to provide a quality education for our daughter.

Sincerely,

Iraq’s Mother

Iraq's Mother

Gender Bias and an Autism Diagnosis in Girls

I wanted to share this very good article (complete with references and research to back up the claims) about the differences in the presentation in autism with girls. This is one of the reasons getting a proper diagnosis for a daughter is far more difficult that getting the same diagnosis for a son.

See the article here.

Does Schizophrenia, Bipolar Disorder, Autism, Depression and ADHD Run In The Falily? You BET it Does!

And I can pretty much name a family member with one (or more) of those issues! 

A group of researchers has now found a common genetic link for each of these disorders related to calcium channels in the brain.

Read the entire fascinating New York Times article here:

Oh - and as a side note, the most "normal" appearing direct relative I have is my mother... who has issues with her calcium levels.

Go figure!

So It's Been A While...

Yes - it has been a long while.

Iraq has been a tough kid to raise, but she has found a new love...

Horses!

She started riding in December. I am able to work at the barn part time and earn lessons for her... which suits me just fine!!

The Skink...   Still adorable! She was invited to sing a solo of "Jingle Bells" at the annual school board meeting, and reportedly was the star of the show. Her amazing teacher (who loves her to bits) got her the most adorable outfit - my kid looked like a princess!!

The chickens are growing up. Gunnar is getting to be a big boy - and very handsome too!

The Skink got a drum set for Christmas... which she loves!

Iraq got two fuzzy chickens (Silkies) for Christmas. They are much quieter than The Skink's gift and they lay eggs!

This one thinks it's a wookie, apparently...

Iraq's first time cantering. Don't let her expression fool you - the rest of the way around she was beaming!

And today the girls enjoyed a picnic... with guests.

Hungry guests...

Yes - farm life has made an extraordinary difference in our lives... and our choice of picnic guests! But we're loving every minute of it. We still have our challenges, but challenges just seem a little easier when you're surrounded by beauty... and chickens.

(If you happen to like chickens, please check out my other blog: Natural Chicken Keeping)

*

The day after - Spooky Happenings on the Funny Farm

The day after the Chicken Zombie Massacre:

As you can imagine, at first Iraq was quite dismayed to find their carefully carved Halloween pumpkins had been so unceremoniously defaced by the chickens, but soon made a certain peace with the fact that chickens like raw pumpkin almost as much as children like pumpkin pie.

Little Millie was even invited to a private dinner. Who knew chickens would eat kitties?

And then, in keeping with the spooooooky Halloween mood, Iraq and The Skink scalped those poor pumpkins and ran about the farm brandishing their trophies like a couple of Native Americans after a successful battle!

 Hmmm... that one's already growing some hair!

Whooping and hollering, the two girls ran about the yard with the pumpkin scalps.

The chickens might have been frightened had they not been Zombie Chickens and zombie chickens fear nothing because they are undead! It would be an interesting thing indeed to attempt to bake a zombie chicken only to turn on your oven light and find it tromping about happily inside your oven!

And the heck with the four and twenty blackbirds backed in a pie... I wonder how the king would have reacted to the pie being opened to release four and twenty zombie chickens?

I'll bet the Little Red Zombie Chicken wouldn't be caught undead running around claiming the sky was falling! No - she'd be lurking in a back ally clicking, "bu... bu. bu...bu... brru... brru... brr... brains!"

The Birds (1963)
"...and remember, the next scream you hear may be your own!"  

 "And what," you ask, "do zombie chickens look like? After all, a decomposing chicken must make a bad molt look like a good hair day for a zombie chicken!"
Well, I'll tell you. Zombie chickens look a little like...

GUINEAS!

 

And then as the moon rose into the sky, the children (who seemed to think they had been zombified too) went out to greet the dark shadows lurking in the distance.

 

“I will not be threatened by a walking meat loaf!”
An American Werewolf in London (1981)

 

 

But as hard as she tried, she could not suck the brains through the calf's thick skull... which was just fine with her mother who didn't want to have to compensate the landlord for the calf! 

And they all lived spookily ever after!

*

Zombie Chicken Attack!

(You didn't think I could leave the day on a negative note, did you?)

We interrupt your regularly scheduled programing to bring you images of the Chicken Zombie Apocalypse currently taking place in Virginia!

It's a terrible thing to behold! You can't hear poor Jack screaming as there are too many zombie chickens in his mouth! Jack was never known for being a potential Mensa member, but so far the zombie chickens have eaten most of any brains the poor guy had left... and quite a bit of his face, too!

Jack used to smile all the time, but now he bears the most macabre expression. Never again will he fall for the old "Just a quick peck on the cheek" thing. Lies! They didn't have friendly kissing in mind, but evil brain and face guzzling intentions!

And now the unthinkable! They're eating Demonic Hello Kitty!

Uhhh.... "Goodbye Kitty?"

Om nom nom nom!

(And for those of you who may be wondering... yes - Iraq had a meltdown over the Hello Kitty pumpkin. We printed out the "before" photo of it, and she carried it around the rest of the day.)

*

Asperger's, Autism, Down Syndrome, Coping with Parental Frustration and Those Thoughts I Don't Like To Think

I've always taken great pride in the ability to see the good - the silver lining - in my life and in my daily challenges with my kids. I've blogged time and time again about the good and fun things that go on in our family, and yet I've also been pretty open about the not-so-great things that happen... I make jokes about both the good and the bad. I'm usually pretty good at being somewhat witty sometimes. (Yes - that is a nearly nonsensical sentence on purpose. - LOL)

Today I'm going to talk about some frustrations that have been building up lately. I'm going to talk about how. for the first time since she was born, I've let myself wonder what life would be like without her. It hurts to think that way, and it hurts to admit it... but I'm going to, and I'm going to share it with you.

Both the hubby and I are frustrated. We're tired - exhausted really - and we're leery about the future. The vast majority of parents experience plenty of bumps in the road, but live with the knowledge that once their kid turns 18, they as parents will be rewarded for their toils with a certain amount of new freedom.

When our kid turns 18, we don't know if she'll be capable of being granted independence within our society...

And I should mention here that I'm actually NOT talking about our daughter with Down syndrome. No - I'm talking about our daughter with the Asperger's diagnosis. We're not too worried about The Skink. She is so social and outgoing she'll probably have a job through high school and at some point her dad and I will be begging her to stay and not to move out.

No - I'm talking about our very high-functioning autistic daughter. Asperger's... the diagnosis initially fell on our ears like music because it meant there was a word for the hell we had been putting up with since her birth.

 (She's beautiful, isn't she?)

I don't want to give the impression that all children with Asperger's are hellish. They are NOT! If you've met one child with Autism/Asperger's, you have met one child with Autism/Asperger's. Simple as that. They are all very different and they all have their very own quirks and personalities. In fact I am an Aspie myself, and my mother would tell you I was incredibly fun and easy to raise! (My high-anxiety quirk as a child kept me out of trouble. I was far too straight and narrow at that time to do anything I saw as being "against the rules." I know what you're thinking - "Holy cow! What happened?" LOL - with time I learned the world would not implode if I let my rebel side lose... at appropriate times of course.)

Our daughter just happens to have some very hard to live with quirks. She did not inherit my "don't break the rules" thing. Nope... she seems to seek out new and more devious ways of breaking rules. And she seems not to care a bit about ramifications or punishment. No matter the punishment she receives, she will continue doing the same negative behavior over and over and over.

I've talked about her stealing (kleptomania) a number of times. See one post here. The issue continues. She "relocates" stuff from her brother's room, stuff from the medicine cabinet, stuff from her classmates' desks at school, stuff from her grandparents house and stuff from wherever else she decides to take from. Well... I should rephrase that. Her kleptomania is an OCD behavior - a side effect of the autism spectrum disorder. It is something that can not be talked or punished out of her. It just is, and we just have to deal with the issue one day at a time. (Yes - we do punish each and every occurrence - that we find out about - all to no avail... but we keep on trying.)

She still has meltdowns. Lots of them. The pent-up stress from the day is released at home each evening like a dam breaking. Anything at all can be the catalyst for the release. Homework is a given catalyst. If she doesn't melt down over homework, it could be anything else - like not being allowed to eat ice cream just as I'm getting dinner on the table. It starts with a whiny voice... like a jet engine warming up... and progresses to tears and running away, throwing things or even violence. In this state she can't hear reason... in fact I'm not sure she can hear anything at all. Once the dam starts breaking, there is nothing that can be done to hold it together. Nothing. Ever.

And this doesn't always happen only at home. She has a very low threshold for stimulation and tends to become very overstimulated in busy, loud or colorful places... like the grocery story, fairs, festivals or any new and different place we might try to take her.

She is dependent upon a set schedule and doing things in a very set way. Any variation from the schedule or trying a different way of doing something causes a huge amount of anxiety in her that can erupt in a myriad of ways.

She has exhibited a variety of very unusual behaviors over the years. For a time she was urinating in strange places. Into purses, onto toys, into cups that were kept like treasures in the back of her closet. Thankfully that little habit has gone away!

Then there was the Mark of Iraq phase where she would mark all of her clothing and much of the rest of the family's clothing with a single cut from scissors. On shirts it was usually in the front, just to the side of the left arm.

Instead of playing with her toys in an imaginary way, she prefers to line them all up in neat, straight lines. This is ongoing.

She takes food and eats (part of) it in strange places... then leaves the rest in hiding. Granola bars, pop tarts, yogurt, cheese... you name it. Sometimes I don't find it until I tear the place apart looking for "the smell." Other times I just follow the ants to it or stumble upon it in a sock drawer or some other odd place by chance :(

She hoards or squirrels things... She may take a bag, backpack or purse and fill it (stuff it, really) with apparently random items, or simply make great piles of things in random places. Nobody is allowed to touch any toys that are lined up or in a pile... ever. Or else!

She is downright cruel to her little sister, but she just doesn't understand that she is being cruel because she is not in possession if the clear sense of empathy that other people are born with. She is having to learn empathy... but for her it is just a matter of going through the motions (when she wants to).

And lately? Lately her newest trick has been hiding. Not like hide-an-go-seek hiding, but creepy hiding. Like hiding under Daddy and Mommy's bed. We've found her under there (and punished her for hiding under there) numerous times in the past months. Once we discovered her under there while we were... ahem... you know. And she keeps doing it. We now have to check under our bed and in our closet before we... you know. And that does nothing for the mood!

She also hides behind one of the couches in the living room. I have no idea how many inappropriate murder mysteries she has witnessed from back there. It's exhausting trying to remember to check for her in this place or that when we've already dealt with a day of melt downs and OCD behaviors and just want to sit in a semi-coma-like condition for one hour and watch a weekly series.

It's exhausting!

We've had therapists come into the home and work with her and work with us. The therapists are required to work with us under the assumption that many parents just aren't parenting well. Every time we get a new therapist (we've had a few because Iraq is hard to manage) they soon come to the conclusion that yeah - we have tried everything... to no avail. So usually they want us to go back and try something again. We always do... to no avail. But if it was deemed "worth a try" (again) by the therapist, we do it.

We've tried positive reinforcement, negative reinforcement, every combination of both reinforcements and a certain extent of letting her have what she wants to lower our parental stress level (as suggested by her psychiatrist). The behaviors continue.

And you know what everyone (doctors, therapists, teachers, etc.) tell us now?

"Well, just keep trying!"

For 9 years we have just kept trying. And at the same time we have been (still) dealing with a wide variety of bizarre and unusual behavior each and every day that most other parents will never be confronted with. Ever.

And because she is so difficult , we never get a break. When we moved from the city to the farm in August, my wonderful mother kindly took the two girls from August 17 until the evening of the 20th so that I could dedicate myself to packing and moving. My poor mother was dealing with some bad arthritis pain at the time, but by the 20th she called me, almost in tears, to say that she couldn't keep them any more. That 5 days was long enough!! While it hadn't been 5 days, I totally understood where she was coming from! Every day spent with Iraq takes the work of 3 or 4.

So while the one thing Daddy and Mommy really, really, really need is a vacation, it is unlikely we will get one any time soon. We went on a cruise when Iraq was about a year old - my fantastic sister watched Iraq and Broadway for us for a whole week - but that was the last time we were away from her (until the move which wasn't exactly a vacation by any stretch of the imagination).

You know what? It is hard. It is really, really hard, and there is no defined end in sight.

The Skink? In comparison to her big sister, The Skink is really, really easy! Even though she wasn't fully potty trained until she was 6. Even though she still doesn't understand simple things like staying out of a road or other basic personal safety issues. Even though she has had some health complications related to her prematurity. Even though she learns things slowly. She is still far easier!

So why am I writing all of this? I'm writing it because I don't think I'm the only person - or that my husband and I are the only couple - feeling overwhelmed by autism. I wanted to share it so that other people who are at the end of their rope (and still being told by the professionals to "Just keep trying,") know that they are not alone. I am sharing this to give people who do not have a child in the autism spectrum a little perspective. Do you know how crushing it is to us when you give us dirty looks in the grocery store because you assume our child is just spoiled and that we are bad parents?

And finally I am writing this because I have not gone into depth about these feelings before, and I don't want anybody to be under the incorrect impression that I am an awesome and infallible mom who wears a "SuperMom" cape under my clothes. (Well - not usually - it gets too hot and constricting, I find.)

Yes - there are days I would sell my middle-kid to the first band of passing gypsies. Of course those are the days that the gypsies don't pass by. There are days that I fantasize about life without this child and all the stress and drama. I believe I wouldn't have high blood pressure or have had a cardiac arrest were she not in my life.

And then I feel horrible and guilty for allowing myself to think such things. What kind of parent am I who would wish away her child? I am falling short of my expectations of myself... which are far from perfect to begin with.

I am a "good enough" mom... but to keep it real, I'm also human and I have my moments.

So please leave a comment! Don't forget to include the dates and times you can "babysit" my 9-year-old for me!

JUST KIDDING!

I love my readers and I wouldn't want to torture you that way!

*

Calling All Turkeys

Well, as promised, a picture of The Skink wearing her penguin nebulizer mask and orchestrating her own "breeding teetment."

Over the last year she has gotten quite talented at taking care of her own breathing treatments, going so far as to tap the medication cup to use up the last of the droplets. All I have to do is put the medication in and tell her to do her treatment.

Daddy got up with the gang to get them off to school this morning and says The Skink didn't sound too bad this morning. YAY! (She's still getting 2 breeding teetments a day until further notice, though!)

As for me, I spent the night perfecting my turkey calls. Not sure if any turkeys fell for the ruse and came out of hiding as I was bent over the toilet at the time. Yup - one of those nasty 12-hour deals which has left me with one heck of a dehydration headache... but thankful it wasn't a 24-hour bug!!

So - I'm keeping it short and I'm off to take a nap!

By the way - what do you think of my new layout??

*

Twisted Wheezer on the Loose!

Yup - this morning The Skink had the audacity to get out of bed sounding reminiscent of coffee percolating through an old coffee maker. Luckily she was a perky percolator. She bounced out of bed (wheeze), tore off her pajamas in record time (wheeze), and demanded a different pair of jeans (wheeze). She got dressed (wheeze), bounded down the stairs (wheeze), and yelled, "Yay! School!" (wheeze).

I asked, "How 'bout a breathing treatment?" to which she replied, "Yay! Breeding teetment!" (wheeze).

Ya know? Tomorrow I'm actually going to try to remember in my un-caffeinated stupor to get some pictures of my happy-go-lucky, wheezy Skink wearing her penguin nebulizer mask.

And why does spell check not know the word "nebulizer?" It keeps asking me if I want to "neutralize" my child!

No... I don't!

That would be twisted... much like my child in this photo. What? Is she doing some sort of macabre Halloween pose? She looks like she just slithered down some stairs and out of a horror movie! (Which means this picture is definitely one for this year's Christmas card!!!)

Now that's how you make the most of hypotonia!!

*