Tuesday, October 30, 2007

So the letter got printed in the paper. . .

Yeah, ok- not trying to be a dork, but that is pretty much all I can do. . .or is it? For those of you who know me, and even those of you who e mail me wondering what is my deal. . .surely you must know that I have more to do with this, right? :)

Here is the thing, so many social changes have come with those advocating change not sure they could even change anything, in this case, I know I can, because things HAVE changed. I have children who had hundreds of dollars worth of shots, and thousands of dollars worth of medicine, and even more in uncovered doctor's expenses because of the short sightedness of the insurance industry. . .and I can use that to my advantage, for the cause of helping kids not as blessed as mine, a total bitch for a mom who would NOT sit still and "wait and see", and for those kids who cannot afford to wait. . .so, I am taking this torch up. . .stay tuned!

After MUCH careful consideration, I give to you. .

BUTTER PUP

DARTH MUFFIN
COCOA THE WICKED!!!

Sunday, October 28, 2007

Stats is done. . .for now


and other than an alarming lack of association between my variables. . .all is well.

So, why am I grateful to the Wiggles? Long before the dreaded autism word was a part of our lives, I already knew something was wrong with the way Precious was acting. He was not speaking at all by the time he was 2, Cocoa was born, and the doctor thought he was just mad- but I knew. So, we finally figured out what was wrong-autism, and the thought of what was going to be, what was, and of course, what was not made life a pretty tough thing for awhile.

Precious was NEVER a sit and rock kid- he was a jump off the bed across the room kid, so days were exhausting, and stressful. Plus, as he grew, it became clear to him that WE did not get him, and we did not help him when he needed it, because we did not understand what he needed. . .so we, as a collective, were pretty stressed.

One day, in utter desperation, I turned on the TV, determined to sit for 5 minutes and mope- and Playhouse Disney was running a show I had never heard of- 4 adult men in pastel shirts(see above) dancing and singing about kids stuff (note to self, Google these freaks AT ONCE) I was about to turn it off. . .and Precious did the strangest thing- he started to dance and sing. . .SING the song after a few minutes of listening. . .I was horrified and ecstatic. . .most in awe of my child, in this moment, actually comprehending, and listening! Wow, indeed.

So, these years later, and he is still a big fan, mostly of Captain Feathersword. . .but the group as a whole continues to capture his full attention.

So, I am going to be FOREVER in debt to 4 Aussie men who defied gender stereotypes and made me aware of my son's potential. . .found out later that all 4 have education degrees and that many other developmentally delayed children have had a lot of progress using their music.

G'Day!!

Get ready to . . . . .WIGGLE!

Precious "getting down" with The Wiggles


Meeting Captain Feathersword!!!


Yep, next weekend, we are going to see The Wiggles!!!!!!!!!!!! Precious is sooooooo excited, and well, I am. . .er. . .EXCITED for him:)



Bluntly put, I have never been a big "kid specific" entertainment fan. Even when I was one, which I am beginning to doubt I ever was if today's childhood experience norm set to to be used to measure such things, I did not like costumed, made up characters, and CERTAINLY DID NOT WANT TO MEET ANY OF THEM. I would be such a freak today- even Butter, Mr. Practical, was thrilled when Optimus Prime phoned the house last week (I never said I would not arrange such kid activities for my babies) I never went to events like this as a child- no money and often they were held on Saturdays, which would leave me out.



So, I myself have never seen The Wiggles live- but Precious saw them just after bing dxed, and STILL had a great time. . .this summer we went to Six Flags, and he LOVED the "fake" show(see above)and he. . .sat for over 2 HOURS between shows so he could watch the show again!

Ok, so now you know my deep dark secret. . .I have no real appreciation for this kind of "entertainment". . .bad bad BAD Rainmom. I do have a reason why I will always be grateful to these people, this group- I will tell THAT story later. . .
M out

Thursday, October 25, 2007

AN INEXCUSABLE OMISSION!



Introducing Kenzie Michele
Born August 31, 2007
My brother and his wife and 3 daughters are all well.
I am now a foremother. . .tradition and superstition be darned!!!!

A Letter to the Editor


Submitted this morning. . .
The Wisconsin budget. Sigh, what a mess. Buried under the new taxes and the perks for the usual suspects, the absence of the provision that would have required insurance companies to pay for therapy for autistic children like mine was not really discernable. However, families like mine felt the loss deeply.One of the first things that echos in the mind of parents as they struggle with the initial diagnosis of autism is the hope that therapy provides. The hope attached to the intensive expensive therapy required cannot be underestimated. This treatment is one large piece of solving the puzzle, and while my son is one of the fortunate ones, it is the shoving aside of the many parents and children who are in desperate need for this help, and the ones who have yet to be diagnosised that saddens me. This jettisoned provision was important, and it would have helped many parents in their struggle to help their children deal with autism.

Tuesday, October 23, 2007

My happy place lately





Anyplace these people are is my happy place:)

I cannot WAIT for this semester to be OVER!

Stats is still a thorn in my side- that WOMAN is not to be satisfied. . .and while I respect the fact that she deems it unnecessary to PRETEND to like me. . .I would have appreciated, at the very least, a lack of OPEN HOSTILITY! Sigh.


However bad it gets, I have to tell you, my Precious gave me the BEST early b-day present EVER. . .

Precious: Mommy, where ARE you?
Me: Right here.
Precious: Come HERE Mommy, I NEED YOU!
Me(running): Are you ok?(slight panic)
Precious: Hug and kiss Please Mommy?
Me:kisses and hugs aplenty
Precious: I love you, Mommy

Pure BLISS!!!!! My Precious told me he loves me!

Me: heart wells, so do tears:)

Rainmom makes it rain. . .

Tuesday, October 16, 2007

And now, a word about school

Ok, stats is going better- finally understand Stata and have been doing well on the outputs. So, cool.

However, a long standing, transAtlantic feud is now home to roost, and it is getting beyond pathetic.

I shall explain- Bck in 2005, an instructor I have know since undergrad(which for me is 2002) was having a party at her "estate." When I got the e mailed invitation and saw who was invited, I assumed I was invited in error, and deleted the message. This instructor approached me in the hall and was insistant that I should attend. I scrambled to make arrangements for childcare, feeling QUITE important and daydreaming about the supposed status as "promising doctoral student" ready to be feted around. . .and was CRUSHED and HUMILIATED beyond belief when I arrived at the estate. . .dressed for the party. . .and told I would be serving the drinks, thus saving said instructor A TON OF MONEY(so she said) and well, I heard I was thanked during some conversation, I did not hear it, as I was dealing with a red wine spill in the sunroom(honest to G-D, I was!!!!!) wow, what a night. So, I hung out with the caterers, got asked to serve at another function (complete with business card) and cried myself home. . .not a penny offered, even for gas!

So, the relationship was a bit strained. . .at least on my end. She asked me to code some data for her as an overload, since I had a 50% appointment already, because she was off to England(hence the trans Atlantic), she apparently was unhappy with my refusal to work MORE than the 10 extra hours. . .and was rather put out. I did not realize HOW put out until this week- when I saw her between classes, and she did not return my greeting-despite having seen me. . .no big deal, but YESTERDAY was so ridiculous. . .I had to see another prof down the hall from her, walked by her office twice, the second time, while I was passing, she SLAMMED the door as I went by looking right at me!

Alllllllllrighty then, I guess I will not be asked back to serve at HER estate again- which, of course, cuts me sooooooo deep. . .NOT!

Good thing I no longer need her for my committee, bet she thinks I do, but I do not! I hope:)

Sigh, I could have used the serving experience, in case this whole doctoral thing doesn't work out!

Normal Parents FEAR US

See?? http://news.yahoo.com/s/ap/20071016/ap_on_he_me/autism_video

Sigh-when is a child not a normal child? When you frame them in the "BEWARE your CHILD COULD BE AUTISTIC" dynamic!

So, watch the video, but if you have kids in the "high risk age group" 12-24 months. . .watch at your own risk. . .autism could be lurking around the corner!

Ok, that is pretty bitter, I am having horrible day, and this video is so sad! This is why-

QUESTION OF THE DAY
How do you tell the difference between intense concentration in a child, and autism spectrum behavior?

ANSWER- It is the question between big picture and individual behaviors. Big picture- Precious had a TON of behaviors that made me realize very early that he was autistic- it was not just intense concentration skills- it is the sum of the parts of the development, not slices of autistic behavior and oooops, AUTISM GOT YA!

The definition of the situation is also important- if you are looking for autistic behavior, chance are you will find it. . .within the context of "looking for signs", where it gets iffy is when these behaviors are not put into the context of "normal development" and are seen as proof of autism, instead of part of the child's total self.

Parents, there are SO many things that go into the diagnosis- do not freak out if your child has a few of the "signs". . .
M

Sunday, October 14, 2007

One unsung hero. . .until now

Casey The fearless

What was THAT??
So, I have to be honest at this point- I was wrong about this dog. Let me explain, I did not want another dog. We had a dog for 12 year-Ladyhawke. She died, and I was in NO hurry to get a new one. It was too much work- too much hurt if G-d forbid something goes wrong. But Butter would not let it go. He kept up with the constant pleas, so I decided to get this issue done with once and for all. I went to the pound thinking there would be no dogs available. 3 HUGE rooms full of dogs to choose from. Sigh. So, one whole room had to be avoided because the dogs were pretty kid unfriendly. So, went to the kid friendly dog room- and a massive barking session began- all the doge were going nuts. . .except a little black lab looking pup. Who sat straight up, looking right at me, as if to say "what TOOK you so long???" So, got her out for a look- and despite all my efforts, I LIKED HER. Sigh.
So, the DEAL BREAKER, I took Precious to see her. The pound lady told me that 2 other families had been in since yesterday, but that Casey had jumped all over them, and they took a pass on her. So, I am thinking- deal breaker. Except what happened next sealed the deal. Casey came out, and took one look at Precious, and headed straight for him. Sat right in front of him and waited. Precious pretended not to see her. . .for awhile, then he held out his hand slowly, and Casey waited, until it got close, licked it very gently and waited. Precious bent over to pet her, and she nuzzled him- did I mention she was a 7 month old PUPPY??
I got her the next week- and the next day a new therapist started, and Precious was not interested in working with her and started to cry-Casey pushed the door open and stood in front of Precious barking and growling until I said it was ok, after I had checked everything out.
This morning, I was wrecked after staying up too late working on Stats- and woke up late, well, later than usual. I did not hear Precious and ran to his room- Casey was there already-in his bed his arms wrapped around her and she was alert and waiting for me. Once I told her I had him, she trotted off to play with Cocoa and Butter.
I am sorry that I did not want her at first, she has made such a difference in our lives. I actually referred to myself as "mommy" to her the other night- I NEVER did that before. Sigh. I am hooked, I am officially a dog person.

SO, what do YOU think Autistic parenting is supposed to be like!! Hmmm??

Ok, so fair enough, if I am calling out other autistic moms, I should be able to provide an example of what it should be like, right? Wrong! I do not suppose to say that mine is the definitive way to do this, autism, in my opinion, the ultimate social construction, and no autistic parent should be feeling obligated to follow any of my leads. . .I do not consider them leads- they are paths I have taken. Nothing more, nothing less- the way I have led my son to his current state, may not, and perhaps should not be used as The Rosetta stone- Autism whisperer, puleeze!

My problem with the whole "spotlight on famous moms who have autistic kids" is such- in these articles, and the way they were written, it seems like autism is something that can be cured (not proven yet) can be caused by shots (disproved as recently as 2004) and that diet changes can eliminate the problem (again, not a cure some kids who showed improvement with the gluten/sugar free diet have regressed)

The diet thing drives me nuts because some kids have the over stimulation issue so intensely that they literally cannot eat food- there are 7 year olds like Precious who drink ensure/formula and some baby food because they cannot tolerate to swallow anything else. There are 7 year olds, 10 year olds, 3 year olds who are on tube feeding because they cannot swallow at all.

All that I know is that seeing Rainman and reading about these 2 specific kids will not ever fully lead to comprehensive understanding about autism, because these kids with this condition are still individuals, and what works for some will not work in others. . .at no time did I ever mean to say that I alone was the voice of the autistic mom- and I will not let celebrities do that either, simply because you have some sort of fame doesn't mean you are less mortal. . .right?

So, more to come, as I have more to say on the subject. . .for sure!

One of those lives

Leaves!!!!!!!!!
Raking is still fun:)
Hard work!
The Three Leafers
Precious not happy to be shopping!




Total smackdown of the therapy supervisor yesterday- found out she is not liking my hour mongering. . .I want Precious to have all the hours he can get. . .as he goes post intensive after the new year! So, I had the NERVE to comment to her supervisor that I felt she was shorting him hours, because she was not happy with my frequent questions about why he is so low. . .oh oh, I would hate to be her tomorrow, as I had words with the man about her attitude in general and he stated that she was having the same problems with her other moms. . .hmmmm




So, stats class is totally kicking my ass. Not from any real lack of understanding, just for having to deal with the instructor- I guess I have just been so spoiled by the ones I have had in the past. My committee for my Master's was top rate, and I got spoiled by their like of students and teaching. . .sigh! I am rusty, I have been trying to review, especially logistic regressions, but she has no tolerance for my rather "remedial" questions. . .we sha see if my Ordinal regression is up to par, wonder if I do well. . .will she think I had help? Too funny as some of the class is e mailing ME for help!




So, other than that we are holding it together- I have selected my doctoral chair- Amanda will be doing the honors! As Ann and I have parted ways, well, not that I am grieving, Amanda is the best choice!