Fire on the Mountain

I consider myself an Ozarkian now, although I hale from Nebraska, have roots in Wyoming, and spent the bulk of my young adultness in Colorado. The majority of my dad's side of the family live from Central City to Denver, and my brother and sister have also migrated there. My mom is currently with my sis in Colorado Springs, where she is getting the best medical treatment and dialysis. Yesterday, my mountain, Pikes Peak, which towers over the city of Colorado Springs, became engulfed in fire...and is quickly moving towards the city.


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Chapel Hills


 




 Air Force Academy the devastation and loss of the Flying W Ranch Please take a second this morning, and pray for a resolution to this disaster. Pray for the firefighters and law enforcement giving their all to get it contained, pray for those that have been displaced, will be displaced, and those that will be starting over with nothing. Please Pray for Colorado

How Smart is My Kid?????

When trying to describe Molly to workers/teachers/case workers/doctors/nurses, I always tell them how smart she is. They usually give me the "pity look" ...like I'm still swimming in some kind of IQ denial. She is smart! and very tuned-in to those closest to her!!  I think she is also smart enough to figure out that if you flip your teachers breakfast tray onto the floor, mom (whom she KNOWS was not preparing for a work day) will probably come right back to school and pick you up.


In addition to the Sarge (hubby) and Molly Kate, we house 4 pets....2 dogs, Sarge and Mizzy....(yes, I am aware my dog and hubby have the same name) Hattin the Cat & Lucifer ;I have tried not to get too attached to them, them making it easy to achieve that goal for me in the spring with ALL THAT HAIR....but my resume would read..."a lover of animals" right after 100% Mom. 


One of my cats is old, probably 16 yrs or better...Lucifer, the crotchety old overseer of all that enter this home. He rules the puppies as well as any workers or visitors that come into his realm. He prefers grandpa's room now, as it's off limits to little girls, and as much as he loves them his old body doesn't tolerate them too well.


and one fairly young...4 to 5 yrs. The latter is my grand-kitty, leaving home with my eldest for the big city as a tiny kitten, only to return home. His now-over 10 pound size, and inability to cope with Sissy's 18 hour away-from-home days was wearing thin on the both of them...he's a needy thing.  >Hattin the Cat (Shauna came up with that cleaver spoof on Dr Seuss) is quite the clown, and even the crusty ole Sarge (daddy) who vowed to me his dislike of ANY felines has come to refer to him has "his cat" Molly just calls him "Coo" (don't ask, i can't tell you...she calls Old man kitty, Lucifer..."cat cat cat cat CAT!!")


So Monday, I notice that Hattin is not acting his typically irritating self (running by, taking a flying leap and biting my arm, for fun) AND he doesn't want to partake of his nightly treat. (Usually he SCREAMS & trips me until i give him the treat.) So Tuesday morning, I call the kitty doctor, who's up to his whiskers in sick animals, and make an appt...we have to wait for Wed morning...THIS morning, right after i drop Molly at school. I have to guiltily mention at this point about feeling a little grrrrrrrrrrrrrr at the fact that on the ONE day off that didn't involve  an appointment of one kind or the other, BAM, the CAT has to go! 


We got up this morning, and Hattin was not to be found. 


Called the vet, my fear evident in my voice, as I hear his receptionist say "I'M SOOOOOOOO SORRY!" which nearly sends me into tears, but I am super woman, and WILL find this cat if it kills me....and it feels like it nearly did.  Crawling through the woods in the spring is a prickly thing to accomplish. I have found the blackberry patches that are ready to pick, and returned several toys to the fenced yard,  but am scratched to pieces, and probably ate up with chiggers. (something only southerners will understand)


Each time I left to explore a different side of our property and the adjoining sheep pasture, Molly would pull on her shoes and ready herself to help me. "No, Molly, Mommy is looking for Coo, Coo is gone, and you need to stay here with daddy" ,.....and so it continued all day. Mommy was short tempered and focused on a task, and although I wasn't paying attention to Molly too close during this time, she was paying attention to me.


I did take a break and take her swimming, but ventured out soon afterward to explore the woods behind the house. At one point I thought I may have heard one "meow" and did a dash that caused me to sprain an ankle, but never heard it again. 


I finally gave up and came in to soak off the chiggers, (hide/cry in the bathtub) and no sooner had slipped in when there was a knock at the door....and then i heard it....the loud Hattin wail...


Jumping out of the tub and grabbing a towel,  I throw open the door to see the Sarge standing there and cradling a very sick kitty. 


"Where WAS he?"


The Sarge just looks at me and says "I don't know, Molly just walked into my room, and handed him to me"


By the type of dirt that was falling off of him on the vet's examining table, I'm guessing he crawled up under the deck to die.


 He is currently at the kitty hospital staying overnight for observation. Blood tests have cleared him from any fatal, tick-born  illness, and now we just wait for him to recover. 


Yep, that kid of mine is something else........and Very Smart!
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Hattin the Cat died that Saturday night....*sniff* We are so grateful for having him in our lives as long as we did. He was a HOOT!!

Where did i go? I've been hiding.

wow....still reeling i guess. Still getting used to having a kid on the spectrum.  I heard a mom refer to her denial & depression of the Autism as "Pre-Diagnosis" and laughed. I knew just what she meant.

She KNEW that her child had fallen onto that spectrum we had heard so much about, but wasn't doing anything to hurry along a diagnosis. Some parents want to know, they need a reason, and i think those are mostly the parents of NTs. Those of us that have a kid already born with designer genes, don't want another dx.

Then, i got the dx. (that's diagnosis for you NT parents) (NT= "neuro-typical" for everyone else..hahahah or "typpies" as i say, as in  "my other kids, who are all typpies") Yes, we have our own language.

I had a great team at school. They saw it happen, too...and started making adjustments for it while waiting for me to catch up. We started referring to it as "the A word" in IEP meetings. This started happening the summer between 5yrs and 6. In between the two times she attended Kindergarten.  I thought she was angry because we held her back....and hung to that reasoning for 2 years.

Then we contacted an Autism specialty group called Judevine, later bought by a bigger group and renamed Touchpoint. I am still happy we went this route...as they sent a trained eye out with a camera...filmed the testing, and then took it back for review by other experts. It took 6 weeks to get their results back, but the day the envelope came (Larry opened and read, just nodding at me) I got phone calls from all over the state. Technicians wanting to come in and teach us how to teach molly, support, and technical advising. They were wonderful.

I was not wonderful. I cried for a year every time i tried to verbalize the word Autism. Every single time.

That is when the blogs slowed down. you know, if you can't say something nice.........

Then i saw this statement from the blogger group:
http://autismpositivity.wordpress.com/about/

 A couple of weeks ago, someone somewhere googled “I Wish I Didn’t Have Aspergers”.  The phrase popped up in a blogging dashboard and struck the blogger as being particularly sad.  She wished she could have answered.

We don’t know who it was.  We don’t know where he/she lives.  We have no idea if he/she found what he/she was looking for in that search.

So, we got to thinking.  What would we say to that person?  What if it was a kid, desperately trying to make it through tough years of intolerance and ignorance?  What if it were a person who might never stumble across the amazing voices speaking for autism acceptance?  What if that person thought himself/herself all alone?  What would we say about the present?  What would we say about the future?  What would we say about happiness?  And hope?

Each of us in the autism community –- self-advocates, parent advocates, friends and family, teachers, health professionals—we would all have different messages for #IWishIDidn’tHaveAspergers.  But likely we would all try to send the message that there is a brighter future and that friendship and support are out there.

We are asking every blogger in the autism community to write a message of positivity to #IWishIDidntHaveAspergers.  So that next time that individual (or another) types that sad statement into Google, he or she will find what they need – support, wisdom, and messages of hope from those who understand.

And – for those of you who do not blog but wish to join in – please post your positivity message to http://autismpositivity.wordpress.com/ or send us an email at autismpositivity@gmail.com

Please join with us on the last day of Autism Awareness/Acceptance Month – April 30^th – in a flash blog .

Those are some pretty amazing people. And now that I've been slapped out of my funk,  I will also try to get back on the writing horse  and share my Molly, and all her glory, with all of you. She will be 12 in June, and it's time for me to get over it, and get on with it. 

Today? they asked her to stop riding the bus. 

*sigh*

Autism Awareness

IT'S NOT A BEHAVIOR ISSUE!!!

did that get you attention??? You might think you are a better parent

than me, and that you have the inside track on raising the perfect child....

You aren't....You Don't

THE CHILD NEEDS TO BE BETTER DISCIPLINED!!

Wrong again...it is not a behavioral disorder. Disciplining someone who

has not commited a crime is cruel.

IF THAT WERE MY CHILD, I'D TAKE IT OUTSIDE AND WHOOP IT!!

you can't beat the autism out of a kid, anymore than you can beat the brown out

of her hair....the only thing you do is hurt her, and make her distrust the outside

world even more.

TEMPER TANTRUMS SHOULD STOP AFTER 2 YEARS OLD!!

it's not a temper tantrum. It's over-stimulation. You see, she is very sensitive

to stimuli that you cannot even sense. She pulls the scencys out of a drawer and throws

them outside....she cannot wear clothes that haven't been washed, she cannot have a sheet

on her bed. Loud, warehouse/gymnasiums ceilings cause an echo that make her cringe.

When there are too many sensations happening at once, and being unable to verbalize

the terror, she just melts. Sometimes this includes screaming, throwing, hitting or head-banging.

It is just a method to make everything else that's attacking all of her sensory inputs....stop.

You yelling at her doesn't help the situation.

So don't stare...and keep your opinions to yourself. If you happen to be with one of these

ignorant parents, do me a favor and try to educate them. "She may not be spoiled, it may be

that she is on the Autism Spectrum" is a good way to start out.

Autism does not define her....it is part of my beautiful child.

She can learn to control

She can learn to trust

She is extremely funny and humorous, with a dash of ornery.... just like me

She has beautiful eyes

She loves to swim

She loves the Black Eyed Peas, and can rap with them.

She loves being outdoors especially now, when spring is blooming.

She loves her pets, and even the dogs "get it"

She loves playing with other kids....don't shun her. we MISS the

birthday party invitations...we MISS the playdates.

Don't be scared. Just ask us...we'll tell you. We have no problem in answering

honest questions....we DO have a problem with "know it alls" talking behind

our backs.

Your Autism Awareness Lesson for Our Day.

Help Queen Ashton

Hi, sorry it's taken me so long to get back to this. Ashlyn wow'd us all last 2007, when she was elected Homecoming Queen of her town of Hidden Valley. Her mom and I linked then, because Ashton had so many similarities to my Molly...ie Down Syndrome and Autism. Her mom, Leah is my go-t0-girl with questions about special little girls, like ours, her being a few years more down the road than me.

A few weeks ago, Ashton had to go to the ER because a cold had settled into her lungs...double pneumonia. Unfortunately, for whatever reason, she is not going to survive this bout. Her little lungs have just had too much work, are full, including a mass on them, and they have been sent 'home' with Hospice.

Home is the operative word here. Currently, all of their belongings are on a U-Haul truck, as mom was in the process of a move to Oklahoma. They are at Ashton's Aunts home, by the water, a favorite place of the family.

Mom's Christmas wish is to get her family together. They are trying to make it to Oklahoma, where Ashton can be reunited with her sibs, and have one last Christmas together.

If everyone I knew on FB, and who read this blog would donate just one dollar....we could at LEAST get them gas money.

Please help me bring a family home for Christmas. If you don't paypal, send me a check, and I will contribute it for you.

Lets make this a Merry Christmas for a very deserving young lady and her wonderful family.

Love,

e

Docs? Don't forget to listen to the Mommies!!

Long time no see. Life has once again taken over anytime I could have to sit down and share. I should be in Springfield today, visiting my bestest girl, Stephanie, molly's teacher and advocate, who had to retire from her life's calling to battle an autoimmune disease that mirrors MS. She is getting treatment at Cox today.




We love you Steph, and little miss rattling chest has shut down ANY plans we had today...it's perfect pumpkin patch weather, too....but we are staying home, drinking hot tea, nebulizing and praying this doesn't take her over.

In the time that we've been offline, My mom crashed severely, and the port that was installed into her arm had healed enough to allow her to start dialysis. She is in Colo Spgs with my sister, and we worked out a visit with her a month ago. It was so good to rejoin my parents, and see sibs I haven't seen in TOO long! My baby brother Rich, namely.



got to go thru some old pics...this is the way we used to look!



My sister patty has been in charge of the dialysis, which happens Monday, Wednesday and Friday. My appreciation for her saving mom's life, will never be effectively described to her.






Dad is here with me, and struggling with issues of his own. Today is their 63rd Anniversary, and it's sad that they have to spend it miles apart from each other, but unfortunately some things are just the way they are. We continue to work towards some kind of reuniting for them. Happy Anniversary, mom and dad!!




Molly was VERY happy to see Aunt Patty, and understand where Gramma went...she has been looking for her at our house! ;-) To adulate again, the power of listening that Patty has, after a 15 hour drive, Molly was met at the door by her, and she had a stack of solo cups to give to Molly. Patty understood that molly was gonna need some 'stim time' and that stacking cups has a HUGE calming effect on Molly. Simply amazing to me, that someone GETS IT!



Also during this time, Gabe, My Beautiful Gabe Graduated with TWO DEGREES from College. Words cannot express the pride i have for him, as he did this while becoming a husband, and a father 2 times over. He also is Amazing, as is his whole family:





And Kelsi Graduated from High School in Kansas City....I might add...both graduations happened on the same day!!



Having a super happy summer! Then.......


On Aug 23rd, at 5am, with no fever or any head traume, and sleeping peacefully between the sarge and i..molly had a grand mal (tonic clonic) seizure. Her first and we're praying her only one....It sent us into a whirlwind of testing (or trying to test) and a new world of neurology! First we made an early morning run to the ER...this was after it took me too long to dial 911 (i missed it twice) By the time I actually got an operator on the phone, and she made me understand that I needed to give her our address...The seizure was over. When we tried to walk her to the car, she had only 1/2 function of her left side. That arm was flopping, and she was dragging the left leg....I rode in the back all the way, just knowing she had a brain tumor. It was the longest ride of my life.






The CAT came back all clear...The nurses were worried about mama now, she was freaking them out....Sorry about that nurseys, and yes, I was 2 seconds away from total heart failure.



Molly has no idea what happened, and was actually pleased to be where she was, as Miss Stephanie met us at the hospital, wowed us with her instant diagnosis of the CAT, and even asked the nurse to give me a copy of it on CD format...something I would have never asked for. Her mom was right when she tried to explain to Steph that maybe she is going thru her own trials, to be a vehicle for those of us just starting down the path of neuro-opportunities.




One of the follow-up tests required us all to go to Springfield and stay up all night. I worked till 9pm, then we drove to Spg, got a room near the hospital (2 beds ok?....no beds are necessary) Molly and i would walk to the Caseys mini-mart once an hour all night long. She actually did better with it than the sarge & i. (ugh)







They were to perform a "sleep-deprived EEG" which i went into blindly. It wasn't until i chatted with a "pro-mom" who was also there for the same thing. Her boy was a teen, and started seizing at age 3yrs.

She told me that they would attach all the leads (yea, right) let the child sleep a little, and then startly them awake trying to INDUCE a seizure with strobe lights and a tired brain....then they could track the seizure with the EEG and identify what side of the brain was affected, etc. EEK!!


I had been on the phone for the 4 weeks prior to the test, begging them to find an alternate way to do the test...my little girl is 114 pounds of solid mass, that will not allow anything to be attached to her person. It's one of the quirks of the OCD that comes with the spectrum. I knew there was no way it would happen....they were adament about "non-sedation" for the procedure.

So, no one listened.....I get so tired of being dismissed as a psycho-mom by the medical world. And as it happened, even though we took the time to prep, and she stood for 'the hard part' which was scrubbing holes into her head where the leads would be placed, she would not allow such an invasion of her personal self.








I'm betting i will still pay for the procedure..the bills have not started to trickle in yet.

I was also berated by the sarge, for my opinion of the pediatric neurologist. He made me uneasy and seemed irritated if i had a question....and spoke in archaic medical terminology..for instance, when i told him that there was indeed a family link with seizures, he asked if the other family members were "also retarded"

?????? really?....retarded????

I couldn't help but think that if he spoke like he was still in the 70's...maybe he wasn't open to new and improved ways to treat. To me, I got that answer with the whole "sleep deprived" EEG fiasco....and our meeting afterward. He was irritated that molly did not perform, he did not acknowledge her OR the sarge in the examining room, he was irritated that i didn't feel like we needed to start seizure meds, even though she made it through another cycle with no second seizure.

She continued to stay awake for the drive home, and until i put her in the bath. It was gonna take a full bath as she had attacked some chocolate ice cream when we got home. What a little Trooper!



VINDICATION from the sarge on our way out of the meeting....we won't be going back to see doctor "Simba the lionhearted maned, douche-bag, Dr R-word" In fact, I'm just going to be safe, and watch that she is never in a position where a second seizure would be life-threatening, and wait. I will live in this denial bubble until she gives me cause to change lanes....then we'll head for Children's in St Louis, and start the process all over. We can do the EEG In-Patient, but it is too expensive just to do, without failing the procedure we just failed. I don't understand why we just couldn't go that way from the git-to. I wonder when they will start listening to the mommies.

A very Patriotic Father's Day

Blessings to all the dads out there! ESPECIALLY those that deal with kiddo's that are packing something extra....DS, AUTISM, anything at all that makes "a day off" as much in fantasy land as "riding the unicorn" We applaud your extra effort.

We combined passions yesterday, and took MY dad to a Military Memorial Service. We went to lend our voices to the Westboro goons, who like to frequent these things, and upset already grieving family members, but I don't even think they got across the state line! Probably just as well, they may mess with the rest of the country, but know well enough to avoid Hillbillies at all costs. :-)

Molly and I watched from a great vantage point, Dad ended up going inside to escape the heat but was pleased to get a hero's welcome from all the Vets that came after him. I only saw one man that could have possibly been a WWII vet there:





The turnout was amazing...though not all the way across 160 from W. Plains to Gainsville, there were spots where people came out in front of their homes, bearing up under 98 degree weather, and stood solumnly with flags flying. The entire Tecumseh fire station was present, all vehicles decorated and ladders high, with flags at half mast.





The view in, leaving no wondering exactly where the church was:







And the freedome riders coming in:

http://www.patriotguard.org/







There were hundreds:






They started a quick meeting with the Pledge:




Even my post office guy!! WHO KNEW?




They came from all over Missouri and Arkansas:


















In the heat, they snapped together flags and made a line. 15 or 20 stood back, and every 15 minutes they would go and replace on in line so that the line stood for 3 hours, blocking any twits, and giving the family a beautiful entrance to a sad day.






Pfc Matthew England will be laid to rest at Ft Leonard Wood today, with another Honor Guard accompanying him, this one announced only in person so that no evil-doers could see it on their website. He will be the first KIA interred in decades. It felt good to Honor such a Hero, on such a special day