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 today.....it'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 it..it 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 this..kids??? 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 amputation....so 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.

lightning, assessments, and Aubrey Jo

I started this earlier, but lightning crashed outside, causing Lucifer the Cat to jump from outside on the deck, to inside on the couch in one flying leap....and then the rains came. Hard rains, knocking out satellite computer and Oswald on television (OHHHHHHH NOOOOOOOOOOO) We're dodging the tornadoes up north (knock on wood) and just getting some violent rain storms that are short in duration.

Spring is FINALLY here, and the grass seems universally greener after a 10 minute monsoon. YAY! IT SMELLS SO GOOD!! My yellow daffodills are opening, and there are buds on everything else.

We are celebrating but tired here...miss Aubrey Jo has come to rock our world for the weekend. She's very comfortable at grammy's, but wouldn't sleep anywhere but WITH grammy. We snuggled on the couch all night...she stirred a couple of times, but with a few pats on the diaper, she'd drift right back off. Being acutely aware of her new found gymnastic abilities, and the speed in which she can pull them off...grammy didn't sleep too soundly.

She has changed so much!! Dang the ice storms!! I last saw her as an infant, and she returns 4 weeks later as a rug rat!

She is a dancing baby, imitates sounds i make,patty cakes, signs daddy and more, laughs, pulls ups and walks around cruising, stands independently for a few seconds..and can FLY on her hands and knees!!

She will make the "scrunch face" atcha:








WHEN DID THIS HAPPEN!! She's still quite small, making her antics even funnier as she is now the 'walking infant'



and ohhhhhhhhhhhh she loves her food...in fact, if she hears someone in the kitchen, or spoons rattling, or cupboard doors being opened?? she is ON IT! LOOK OUT MOLLY...she's diving in for your fries!!



Also? she is quite tasty



She came with a packNplay, but currently molly is in it, and against all of bree's parent's warnings, SHE is not.... but has run of the house (bathroom doors closed) and she's loving it! She runs down to see grampa in the radio room...chases the cats, and loveeeeeees sarge the german shep. He just makes her squeal! There is no taking your eye off of her...not for one second. I think also, i may rename her "woomba" as even though i've vacuumed 37 times, she still is finding things to pick up and put in her mouth. Yes, Gabe, the dog food dish is secured on the back porch!




I am so amazed by her sheer sharpness. She doesn't miss a movement, she doesn't miss a sound. Her eyes flit and scan and move her to the next escapade. I don't think I'm seeing her in such amazement because molly was so laid back as an infant, either....I think I'm amazed....because she is amazing. I see great things happening for this curious little girl.



We did have molly's assessment Friday...to see if she's on the Autism Spectrum. The interviewer came while moll was outside playing, so we had some time to set up before calling her in. The first thing molly does is run over and give her a big hug! BLASPHEME!! SHE NEVER DOES THIS! lmao...i believe molly thought the lady was shauna, as she was young and had beautiful hair!

She filmed the eval while running thru several tests. After she left, i realized i had answered some questions wrong...YES, she does repeat words consistantly...CAT CAT CAT CAT ...should i email her? Why i am so worried about things that i forgot to say....do i WANT her to be Autistic?

Nope

Thanks to Maria, who is dealing with many of the things we are....i want answers. In my heart i would rather not have the label, but i WOULD like some answers. Those answers won't happen for a month or so. It's a long process. I just know there is a magic key to unlocking molly's intellegence, as there is no doubt that it is there, and whether or not the key lies in a diagnosis on the spectrum, or someplace else...we will keep working until we find it. Molly has many contributions of her own to make.

I will end with my frustration/chuckle of the week.

The school sends molly home all the time. She is "out of sorts" or "pushing" or "has an ear infection" (she had a bad case of wax)" "has pink eye" "maybe the flu" and it's just CONSTANT!!!.... to the point that I was beginning to think that maybe molly is just too hard to handle, and it's easier to send her home than to deal with her. And what am i to do? Tell them she doesn't have an ear infections, or take her to two dr's to make sure. Tell them NO, we will not pick her up no matter what YOU think????


Today I opened a warning notice from the school. She's missing too much!

UGH!!

Off i go...the woomba is heading for my bedroom, which is referred to as the 'toy room' by the sarge anyway....too much FUN! OH LOOK, she's found mama and dadda...and is signing with thumb on her head...and saying mum mum mum (shhhhhhhhh don't tell ally)



I'll leave you with 4 generations (with one crooked little finger) of hands,
and hopes that spring EXPLODES in your area..the way it has ours...Don't forget to spring those clocks ahead, either!

Homemade Oatmeal in the ozarks

(slobber-cycles)





We get a snow day today!


Funny thing in Missouri, as it's (hopefully) the only snow we get for another year or two...
Funny because school and work were called off, 2 hours before the first flake hit.


We do not know about snow graders here in the south...we do have hard-working salt trucks, that dust the maze of two lane highways, crisscrossing
the woods of the ozarks...but other than that? we just wait until it melts!



Unfortunatly, that usually means that the INSTANT the weather man has called the forcast...there is a retail rush, that can only be seconded only by the pre-hurricane plywood purchases.


I'm worn out and my brain is still wobbly, from the number of presciptions that we dealt out yesterday, to panicking women with overloaded shopping carts.

It's tough on retail workers, but it's just part of the prep...



We have to have groceries, bottled water ...in case the power goes out (wells have to have power to function) and the propane tank needs to be full (oh yes, there is no natural gas for heating in the woods...everyone keeps a tank on the property) and wood needs to be brought in, split, stacked, and covered so that it will be dry and easy to light, if you heat by wood stove. (most do)


Groceries are purchased by the aforementioned cartload. Although our
biggest snowfalls are usually less than 10 inches, and are melted away
in just one day...we still have to buy enough groceries to last us until spring, just in case. (temp forcast for monday are in the 60's)


Then, and only then do we stop. We all just stay home and take a break from the real world. We rediscovers our families.....we eat, read books, watch movies, take naps and have converstations...we stay in our jammie pants and slippers.

It is against the rules to interrupt this family peace with outside visits. The only exceptions being visitors who didn't prep, or who are all-electric. We do open our homes to anyone needing shelter....so much so that our little town still does not have public shelters available. There is no need. There are churches, and there are neighbors...and everyone is taken care of.



Snow days in the southern states are 24-hour
family retreats.....family respite care.

Little Bill called me from arkansas at about 7am
(BLASPHEME the RULES!! the RULES!!)...and i
answered the phone on the first ring with a hissing,
witchy voice...not even checking the CALLER ID...
"shhhhhh you'll wake the baby!"

Oh yea, the other great thing about snow days, is your
little "bundles of joy" are SUPPOSE to sleep in....giving mommy and
daddy that one hour of bonding time that is so elusive during
the school year, and the work week. I was a single mom
when we first started loving snow days...and am thrilled to
discover all sorts of new tradions to add to them :-)

So, I wasn't happy with the BRINGGGGGG of my telephone
exploding into my snuggly morning....and threatening the
peaceful snores coming from molly's bedroom.


My youngest son just laughs, says "my bad" and then????

I hear the squeal of joy come out of him...the same way it
would when he was little and finally saw the words
"west plains R-7" appear on the TV scrolling list of schools closed.


"I'm doing donutsssssss in the parking lot!!!"

In Fayetteville, Ark..where he lives.. 3 hours west and a little south of us...
he gets the weather we're going to get ....one hour prior!!


It's not the forcast reporting that's spilling out of
him this morning...it's that snow-day has always
been Bill's favorite holiday of the year!

Ok, you can phone early...but only if you can make me smile that big....

Even when we were in the Pottersville house, 100 years old
with only wood stove heat...(there was a tad bit more preparation
for snow days in THAT house!) it was an awesome holiday.
No matter how broke i was....there were new puzzles, TWO gallons
of milk,(for snow ice cream) a pot of beans on the stove, and corn
bread in the oven.....the boys had developed a special
method to harvest only the cleanest, newest snow for the annual
sno-cream treat.

Food, and the aroma of that food cooking, seem to be at the heart
of the whole deal.... and now, a new tradition......the aroma of a potfull of slow-cooked oatmeal is what you wake up to. (in the south, regardless of HOW many mouths are in your house, you only cook in measurements of 'a potfull' or a 'mess of' ie..."a mess of fried fish').

We added oatmeal the first year Molly was here, and with the first of
what became annual winter trips to the hospital...they hooked me.

Of everything you've ever experienced with hospital food....
they still take the blue ribbon with the morning oatmeal.

I'm not sure if it was the way it
tasted, or it's texture....or maybe it was the joy in
seeing my "failure-to-thrive' baby girl's steroid-induced
appetite dive into the magical mush...I gained a new appreciation
for oatmeal that first trip in.


This crisp morning, there was a big ole pot of long cooked,
brown sugared & buttered oatmeal on the stove when
she finally did wake up.

We'll get to it shortly...for now I'm taking advantage of watching and
sharing in her awe of our new white world....and passing on the traditions
that we've made with this precious non-holiday.

Future plans include a trip to Springfield with tomorrow's thaw....Gabe and Ally find out the sex of my new grandbaby at noon....IF the thaw happens...weather
man-bill has informed me of another 4-8 inches heading our way.

I cannot WAIT for the first time i get to steal the new one away
to grammy's house....for HER first snow day!

IT'S A GIRLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLL!!!!!!!




(snow ice cream)

the rollercoaster of life

What a week!

No big upheavals, but i can't seem to get it together.
Like a post-holiday - pre-spring funk, everything is falling apart!

We're in the middle of a cold snap to boot, something southerners do NOT like! Cold here is somewhere between 35 and 45 degrees...and this morning it was FOUR!!

Got the pickup picked up from the mechanics..it had some weird fuel module out, and would just run out of gas spontaneously and periodically, even though BOTH tanks were full! Took them a week and a few hundred $$$ to diagnose THAT....

And yes, you've heard me whine about this since Christmas...the hi speed has been out for over a month now, and WILD BLUE is just NOW managing to find a technician to come to the house. At least he SAID he'd be here today...they've been saying that SINCE Christmas.

So we're snuggled in, today.

We had hoped to get to springfield and see my growing grandbaby, and give the kids a visit with Yeagar the wonder choc lab, whom i have temporary custody of...(he got too big for the apt...AND my house for that matter at a whopping NINETY POUNDS!) but Miss Molly has relapsed with the ear infection and congestion...and given the bitter cold outside and bad luck with vehicles, we thought it better to stay snuggled.

(on a side note, if you watch CNN today, you'll see Springfield! It's the home of the 7-11 clerk, who was being robbed...and took a broom to the robber! AAAhhhh yes, this is where i live, home of AMAZON WOMEN! hehehe YOU GO, GIRL!)

Yes, Molly AND daddy have both have been to the doctor this week..as well as both dogs!! (i think the puppy appt cost more) Sarge (german shep) has sprained his ankle, and yeagar has a yeast infection in his big floppy ears...common with the choc labs. (ew)

So I'm just gonna hide.

I did get to take a longggggg luxurious weekend soak, and was just rinsing, when we ran out of water!! EEK! Add a well-man to the list of visiting repairman today...

"Vos es los" (sp?)...something mama always said....
"Such is life."

This unending marathon of work/school/marriage/home/health...with a dash of break-downs, a sprinkle of trips to the doctor for added sparkle!

I'm trying to be patient..and trying to keep my eye on the positive.. I mean really, there is NO WAY i can clean the bathrooms or do the dishes with no water, RIGHT?

I do keep a supply of bottled on hand for coffee/expresso...made all of molly's juice earlier, just finished making a Biscuits &gravy saturday morning breakfast, AND did get my hair all rinsed out, before the flow slowed to a trickle...so ALL IS GOOD!

Another positive?? MOLLY IS POTTY TRAINED!! Now for you parents of typical children...i see those eyebrows raising...but those of us with kids like molly have discovered some things about our kids.

For one, they have really dull senses! I hate that adjective... but it's the only way to describe it.
Her favorite foods include foods that typically little ones would not eat...hot chili, salsa, orange anything..etc...they like to FEEL the food and the tastebuds need extra stimulation!
They never cry out in pain, unless there is a broken bone! Having such a high pain tolerance is NOT a good thing, either...we NEVER know how serious an injury is!

Hence the potty training. If you can't feel the sensation...you don't know you have to go!
As with all of her other achievements, this happened in ONE SECOND!
Last Friday night, we took her to the potty, for the millionth time...she resented it for the millionth time...
and then all of a sudden, the new sensations, the trips to the potty, all of it FELL INTO PLACE! and i saw the LIGHT COME ON in her eyes!

I knew the second i saw that look, that i could scratch 'pull-ups' off my shopping list. Something that's been ON my shopping list for SEVEN YEARS!! YAYYYYYYYY!! I think it will push us up into a new tax bracket!! YAYYYYYYY!

Sure enough, for the entire week (except when she succumbed to the sinus/ear infection) she has been running around here and at school, in big girl panties! I'm so proud of her!

Everyone is healthy, my new grandbaby has kicked his daddy in the face, and Gabe (daddy) has achieved a MOUNTAIN of accomplishments this week in his life. I am so proud of him!

Little Bill called with pre-tax-time panic in his voice..one of those rites of passage you hate to see your children move into, but on they go to learn all about the thrills of adulthood! He's still working hard, setting goals, and looking for property closer to mama! I'm so proud of him!

And as much repair as this week has brought us, we are healthy, we have the $$$ to pay for the repairs, the tahoe has one more payment and it's owned, and I'm still sticking to the diet, and have added a stepper to my possessions....
Now, to get it out of the box.

Hope yall are livin the life, and working hard. I'm SOOOO very much looking forward to a little vacation time, when i can travel and get to see some of you, and am anxiously awaiting SPRING!

Enjoy! and kiss the babies from aunty E!!

e

(prayers this week for elizabeth westberry...and the line

infections that are preventing her from moving to a

cancer free life!)