Sunday, August 30, 2009

A new week, hopefully a better attitude

Sorry about my rant last time. If you continue to follow the blog, you will continue to see the rants I'm afraid. Like millions of other moms, facing millions of other disorders (some life threatening so I am feeling somewhat ashamed of the rant) we continue plugging along.

2009 school start

(first day of school, thank GOD that oversized shirts and
leggings are back in! She added the headband around her

She's been very excited about school...she's out to the car before I am dressed, and jabberwocking at home when she's done!

Sadly, we didn't make it one week without drama. I understand she was pushing some classmates around on thursday, and was banned from recess as a result. I'm trying to be open-minded about things, but had put "NO banning recess" into the IEP. It's so important for her to get out, that it will actually EASE her issues. Now I have to try and attempt to see WHY no one is listening to me, without pissing anyone off. That could mean they would just make her give up recess, and not tell me about it. THIS IS THE PART THAT SUX!

This past weekend, we went to Joplin for a big ham-fest Larry wanted to be involved with. Not really my cup of tea, but i drag him all over the country for things I'm interested in..soooooooooo

It started off bad...Molly thought we were naturally going to see Aubrey Jo. She talks about it all the time. I mean all the time...she's obsessed. She brings me my shoes and says Aubrey Jo! She continued to babble all the way..."Aubrey Jo", "Babe" (what she calls Gabe) and we even heard a Jager (the choc lab) When we bypassed Springfield, and i mean THE SECOND we got off on the 65 bypass, we heard a holler from the backseat. It always amazes me that she always knows right where we are! She has been gifted with the sense of direction left out of my DNA. ...and sometimes that is a bad thing.

I do not have the wall charger thingy to her DVD player...i had them all packed up together, she got into it, i hid it...and when it was time to leave, i could NOT remember where i hid it. That is how it is at my house...I'm constantly trying to put things out of her reach...she is constantly on a mission to find those places...and the house is constantly in disarray. If you go to a house, where one child is Autistic...don't form any opinions on the housekeeping techniques of that is what it is....i saw photos of a mom's house who had ALL kids with autism, and laughed when i saw all their mattresses on floors. We have a blow up on mollys floor because she "tornado" sleeps...and nothing is going to keep her in the confines of a "normal" bed.

So, we get to the holiday inn, she realizes that there is not going to be any Aubrey Jo, and meltsdown in the parking lot...she is not even going IN to the hotel. I might add that there a few hundred people glancing off at this incident. And to add the explanation point to the situation, she pees her pants. UGH! (she's not done this in weeks)

To decompress the situation, i pull out the DVDs, but of course the charger i DID grab isn't going to work today....and to top it off, walmart is out of stock of both types of these chargers. They will never have any idea of how important being 'instock' is to costumers.....

The meal at Olive Garden was great...but molly ate nothing. She is still on "Aubrey Jo" strike.

We call for bedding for the rollout...and they bring it at about she slept with us, on a horrible bed, leaving ALL of us sore and grumpy Saturday morning.

Larry gets up and is still rarin' to go to the meet...but molly and i lag behind. I'm determined to make this a better day. We head for the pool. It's an indoor pool and covered in bugs. YUCK! so her and i get into the hot tub, and then go to a fine breakfast buffet, which has all of her favorites on it. She again, doesn't eat.

Things settle down when we check out and head over to the convention center...the DVD charger for the car is working well....and she's finally a happy camper. I kind of wanted to check out the museum, but didn't want to chance a there we were in the parking lot, watching a dora dvd, and reading the 2nd book of Twilight..and watching her consume her first meal in two days. THAT is why we make the effort to keep things "in molly order". She doesn't ask much, but if it's not there, it's all chaos to her.

We did get a little AJ time on the way home, but not enough by the screaming and crying that happened for 10 miles after we left Aubreys house.

leaving Aubrey

We had just caught ally on her way out, so only got 1/2 hour or
so, and no Gabe (he was working) but it WAS a joy to see our little
miss-growing-too-fast. Aubrey has so much more hair, is saying "molly" and laughed and loved on her funny aunt. She really didn't have time for Gramma....cuz it's all about molly. Very Sweet.

View this montage created at One True Media
Molly says Aubrey Jo 8/30/09

sweet stuff

so that was the first week of school, and a shot at a fun
weekend, sometimes it works...sometimes it doesn't

i continue to have hopes and doubts...and i have business to attend to.

For right now, i can promise you...Autism Still Sux

Sunday, August 16, 2009

I hate Autism

Open House at School happens tomorrow, where we get to find a new teacher (eek!) and a new room. I think the chaos of summer school will help in this transformation...Molly should be THRILLED to have a homing spot, even if it's in a different place than last year.

We've been talking to our teachers, and have found out they have TOTALLY moved her spec ed room downstairs (im sure molly + the stairs had something to do with that decision) and rearranged all of the lower grade hallway.... so instead of just running in and dropping off our school supplies tomorrow night....i will be taking molly in at 5pm and staying until 7pm! :-) or however long it takes to make her feel at home, and understand the new layout.

Steph (sp ed teacher) looked just FRAZZLED the last time i saw her...she's pleased with the look and the layout, but like me, worried about what her "routine oriented" kids will think of the change. All the teachers i know have lived in the classroom this week, preparing it for the onset of kids...I LOVE YOU GUYS!! THANK YOU!!

This will be our first year with the dual diagnosis...I will be working on molly's welcome letter to send home to the parents of her classmates's gonna be hard one to compose this year. *sigh*

Down Syndrome affords a sweet, loving kid who interacts socially, knows how to laugh and loves to dance. I can celebrate everything about really has been a positive force in our lives, and introduced us to the most amazing parents & friends. We headed out into the world singing songs of diversity and had a little SPARKLER to show the world that just because she had a duplication in the 21st chromosome, it didn't make her all that different from your child.

Then, Autism entered our lives.

Autism, to me, remains the black cloud that hangs over the first diagnosis. I hate that it snuck in and has stolen my little social butterfly away from her classmates. I hate that it has stolen her words. I miss catching her eyes with mine and having her smile at me and run for a hug. We still have our little moments, but mostly I have become "the provider". Because of the outbursts, typical kids will shy away, now. Molly is learning to communicate her frustrations, but it's still easier for her to throw something at you....and she has a good arm. Adults can understand not so much.

She loves being among peers...but not too close. Her hugs come, but it has to be at her discretion...she doesn't understand why they don't make "Dora" clothing in her size anymore, and could care less about the Jonas Brothers.

I reallllllllllly hate that everyone has an opinion on how we raise our autistic children. We DO discipline, but i can't BEAT HER everytime she is just being autistic. If you learn anything from reading this rant...learn that you should keep your nose out of parental interaction with their autistic children....we find it rude and find YOU to be incredibly ignorant. She is not a typical child...things have to be handled differently....and while I'm on the soapbox...keep your disapproving looks and "if that was my child comments" to yourself, too. WE CAN SEE YOU.

Autism is just different. She retreats into her own little world and is perfectly happy there. She just needs a few supplies...something to dangle, some cheese pretzels, a glass of juice, and spongebob on the tv.

She does not need to be dressed, the cloth irritates her...she loves the bus, but can't tolerate the noise....She loves baths, but brushing her teeth feels like we're brushing them with razor blades...toothpaste like acid on her tongue, and cutting her nails to her constitutes an if you see a child strip nekked in public, or think their nails are a little too long PLEASE JUST UNDERSTAND.

Im a little more down about it today, as I got a chance to see her interact with her typical peers this week...and the distance between her and them has again grown by leaps and bounds. The only way to battle this is "inclusion" with the other 9 year olds...that is why even though she is not going to understand the math class, she will be sitting there with the other 3rd graders. She may be working on something else, but she will be there, learning to sit quiet, to take her turn, to raise her hand and which kid belongs to which name.

My attitude is always a work in progress. I seem to wallow in my grief as far as the Autism diagnosis...still stuck in the "anger" phase.... spent two years in denial..and i wonder how long i'll be angry.

I want to find a cure for this disorder, but even THAT scares me...if im angry now with no answers, imagine how ticked I'll be when i find out that this all could have been prevented. Down deep, i know i did something to cause it....although the govt won't ever tell me what it was. I doubt they ever do.

For now? Teach your children that it's ok to be different, that everyone has a right to be in class. Teach them that the word "retard" is NOT acceptable as an adjective (it has become a hate word) Teach them to take the time to understand those children who are different, PLEASE DON'T RIDICULE THEM....and teach them that it's ok to like them, it's ok to invite them to a birthday party, and it's ok to walk up to their mom and ask them anything you want to help you understand.

Know that one out of every 150 children's parents will thank you and respect you for it.

Monday, August 10, 2009

saying goodbye to summer

I am on vacation, and was suppose to be in Sacramento at the DS conference, but could NOT find airline tickets reasonably priced! (not $1800.00 to fly 3 of us) NEWSFLASH TO THE AIRLINES...i could have charged off a pleasure trip but I REFUSE TO BE HELD HOSTAGE by high ticket prices. You don't want to go bankrupt? You had better make it affordable to go...even if is Sacramento!! (had actually checked out flying into vegas for $39 and driving over...but finally just scrapped the whole plan.)

Then i pouted for awhile, because we did not get to go on vacation this year. Sacramento was SUPPOSE to be vacation...grrrrrrrrrrrrrrr. AND Dr Capone was a speaker at the convention (leading MD authority from John Hopkins on Dual Diagnosis) and I really, really, realllllllllllly wanted to hear him talk. BUMMER!!

So, the sarge came to the rescue..He took us away...away to explore arkansas, and then to swing around to see both boys & my itty bitty....YAY!

a popsicle and a field full of trains...perfect

We went to Eureka Springs, Arkansas.(go google it, it's a hoot)...solely to take molly on a train ride. :-) They have an engine and one antique passenger car that putts at 5 mph into the woods, and then back out again. Just a little ride, but she soooooooo loves trains, and we thought that maybe this would be a good way to see if she'll tolerate it! (with kids with ASD it's easier to try it close to home, and small at first) Plans for Amtrack are always floating around in the back of my head.

pre-flight checks

it's ok, as long as daa-eee is close

She loved all of it! She did get a little nervous once the horns began blowing (turned around and made a beeline for daddy.....not mommy, daddy) but settled down after hearing it a few one point the engineer even made the horn sing.

View this montage created at One True Media
My Montage 8/9/09

After riding the rails...we slipped into a motel, took a swim, watched a new dora dvd...and then headed off to eat! She likes the whole motel long as there is a dvd player, that is.


The next morning, we went to Turpentine Big Cat Rescue Sanctuary. This is another good google site, they do fantastic work at rescuing cats from people that get tiger cubs because they are soooooo cute, until they hit 200 pounds, as well as other circumstances. There are over 100 big cats there from all over the country, as it's the only one of its kind. They need all the help they can get as finances are what they are nowadays.


Ok...mama loved this stop and has wanted to go forever...but not so much's the paths...if there is a walkway, or a path that is visable...there is only one logical answer in mollys world..... WALK! Walk with a determination that would put "the little engine that could" to shame. Head Down, one arm swinging, and do not stop unless you are at the end of the path. Do not stop for any reason...not for rocks in your shoes...not for blisters...not if Spongebob himself appeared on the pathway....keep walkin.

UGH! she would not even LOOK at the Tigers, Lions, Leopards that were trying to get her we didn't stay long. There was only one path.

This big guy was rubbin up against the railing and lookin for some lovin from the caretaker....just like a big kitty!


Then off to Blue Springs....


Blue Springs is hundreds of feet below the highway on the White River. You walk down a gajillion wooden stairs and then on (get this)...A PATHWAY through the ozarks.


The nature-walk was abundant in wild flowers, hanging vine trees and covered much so that despite the 97 degree day, it was cool under the shade of the multitude of foliage.


looky how far ahead of us she is...MOLLY!! SLOW DOWN!!


All of my pictures are of the back of molly as she RAN the entire racetrack of nature...not even looking up to hundreds of butterflies, or fields of daisies. Mission girl had a goal in sight. zzzzzzzzzoooooooooooooom.


We spent the afternoon at Bill's over in Rogers, watching him work (ok she was in the bedroom with dora) and watching "Twilight" The movie wasn't half as entertaining as hiding behind a partition and listening to my baby boy explain to a felon what was going to happen if he decided to skip out on the bail. :-()!! or listening to him be sooooo understanding when the parents were insisting that the law had picked up the wrong kid for felony tagging...even though that kid was visable on 40 different videos from area businesses.

It's weird listening to your baby talk like a man. A wise, understanding but fearless man. Weird and Proud and's just indescribable the feelings. When did he grow up?

Later, we drove up to and had really planned on staying in Springfield, but Gabe had inlaw company in, and we were very sore from the motel bed (old age is rearing it's ugly head here) and the sarge was beginning to complain of "calf cramps" I had to laugh, as that walk out of the Springs?? Oh yea, straight up, and since Molly was jogging it...we both had to, TOO! It scares me to think of how sore it makes me to try and keep up with her now.....what is the future going to feel like???

Everybody agreed we needed to be in our own beds...and even though it meant a long drive in the dark, we were blessed with a big, full harvest moon to light our way...and as a bonus, a meteor shower to guide us home.

Home...i thought i needed a break from it. I was wrong.......unless of course you pick up two sheps from the kennel, and forget to put the cage in....then? oh that warrents the "Stink Eye"


Sunday, August 02, 2009



I haven't been blogging, the laundry room is still a heap of junk-storage, and there are baskets of clothes waiting to be folded. As i work on that, I see more evidence of fleeting time...there is ALWAYS one stack where i put the clothes that don't fit Molly anymore. Did she have a growing spurt? or was I just not paying close enought attention?

My life is still a blur...and I do not like it one bit. Work+shop+home+supper+playtime+bed....rinse and repeat....try to throw in some bill paying, signing classes, marriage tending, etc...and UNCLE!! I GIVE!!

Sometimes i feel like i barely am keeping my domestic head above the level of toys strewn across my livingroom.

This weekend though, it all comes to a stop (except for the hourly vacuuming) because my little g-baby Aubrey Jo is here. She's a mess, but a more cautious mess this time. I can't miss seeing her for more than a week, because she DRASTICALLY changes daily. She's growing too fast and that little brain is sucking up data at warp speed.

we have already taught her to say "bill" !! My youngest son is the light of her life, and is also down visiting this weekend. They play the "blubb blubb flap your finger on your lip" game...and now she says BILL!! followed by that motion/noise. (too cute)


She woke up this morning, before anyone else, and although happy to see me come to rescue her from the pack N play...her first word was "Maul" an appropriate word for her doting aunt, Molly Kate.


Molly is stingy with her toys, More stingy with her Brother and now there is a fight over the tippy cups....but still....Aubrey Adores Molly more than anyone else. :-)

AJ is still a monkey butt...but evidently has learned a few hard knock lessons, as she doesn't fly off the couch anymore but slides down, and if she should happen to get stuck on her descent...SCREAMS FOR PA PA!! lmao!


I just watched her dump her cereal bowl (no milk) on the floor, and look up innocently at bill and say "Oh Oh" For one fleeting second, with her big, bright, lashfilled eyes...and the curls at the back of her head...i saw Gabe. Her daddy, my baby.



Where did the time go???