31 August, 2007

Smells like Teen Spirit, No Wait. It smells like Crap.. Yeah Crap.

Did you know that the spa at Grand Wailea is one of the finest spas in the world? It really, really is beautiful. Descartes and I had a couple's massage on Thursday morning when we were in Wailea and it was absolutely wonderful. Beautiful temperature, the Termé HydroTherapy before hand makes you feel clean and pure and the pre-massage "peaceful pampering continues as a personal spa attendant gives you a complimentary body scrub of Hawaiian exfoliants" Wow, if someone could just come loofah my whole body once a week and gently rinse me off with warm water... I just might make it through this crazy life.

Because this is what happened just before we went to the spa:

My brother’s room was attached to our room, so we opened the door between the two rooms so the little girls could play together, and little Bubsy is in love with Jake, so she is very precious and constantly wants to go look at him, hug him and say "Hi". Since little Bubsy has never really been watched by anyone but family we made sure she had her own nanny… so my kids had one and his kid had one.. so two adults three kids two 6oo+ square foot rooms. Gerard and Pinky had an earlier spa treatment than we did, so they left first and came back first.

Basically we were all in my brother’s room watching the two little girls be extra cute, and we were all ignoring Jake. It is hard because he can entertain himself so easily that it is sometimes possible to forget that we should engage him since he can’t engage us as readily… well he was in the other room (our room) then there was some yelling, and it sounded like he was very frustrated. Then Pinky says “Ewww someone has the poops, bad”. So Descartes went to check Jake and I checked Lucy. Then I hear “jennyALICE! I’m gonna need some help, and Lucy should stay in there”.

Well Jake had pooped, and his diaper had fallen off which explains why he had come to the door between the rooms a bunch of times (lousy mommy... if I only had hindsight all the time.. I would catch all of the cues).

Descartes took Jake to the shower, I took towels to the floor and began scrubbing out what his right foot had stepped in and squished onto the floor. Descartes didn’t know it was on his foot when he made Jake WALK across the entire hotel room. It was a mess. Then Gerard and Pinky had to leave so Lucy stayed in with Bubsy for a bit longer until we had it together… our nanny (who we did not rehire after this incident.. we found another awesome one instead) had arrived some time during this fiasco and was with both little girls and Lisa, the other Nanny.

I scrubbed and blotted and dried and wiped and took a big pile of trash out of the room, and a wash load of towels to the linen service room which was right next door to our room (and told them it was bio-hazard and they asked me to put it in a separate place… nice protocol). So then we left and the room was just a little bit stinky but really not that bad considering. Descartes put out coffee grounds in glasses from our bar service figuring if it can help drug dealers hide the smell of dope, surely it could help one small family with a stinky room... as it turns out you should just spray sunscreen spray.. Hell, that smell covers everything and permeates your clothing through a few washes even once you are home... ahh but I digress.

So Descartes and I cleaned everything up, cleaned up the kid, and popped open the door between the rooms again. We left to the spa in desperate need of some pampering.
It was amazing. Really. Very, very spendy, but worth it. Then sitting on the lanai at the spa I just thought... this is so, so nice. I love my husband, my children are being well-cared for and we are out and about during the day by ourselves.. a true rarity for many adults with kids.. somehow it is okay to go out at night, but God forbid we spend time without them, as a couple, during daylight.

Then we got back to our room. The first words out of my brother's mouth... "Thanks for leaving the door open Jennyalice, now our room smells like shit too. Dude, you guys need to buy some candles."

  • I apologized.
  • I pulled both of my kids out of my brother's room (where they had been playing, Jake against the sliding glass door, tapping and Lucy playing with Bubsy and both nannies.)
  • I closed the door between the rooms.
  • I paid the nanny and said good bye to that little 20-something year old.
  • I called housekeeping and begged for someone to come clean the floor.
  • I started to cry.
My brother's room didn't smell like shit because of the accident earlier.

It was because Jake was sitting in a shitty diaper. A ripe, been-there-since-my parents-left, stuck on and rotting his skin with poo-acid type of dirty diaper.

Probably explains why the little Nanny-girl said "He was sort of agitated the whole time, but he was okay."

It is amazing how quickly 2.5 hours of relaxation and massage can be nearly wiped away.

No pun intended.

If it is that hard

for me to open the package of Provolone Cheese... perhaps I shouldn't be snacking on it.

That's all I know.

29 August, 2007

What do I Look Like to You? Don't Answer That.

I got to spend some time with my dear friend Kaycee tonight. In town on business, we haven't seen each other in years, after spending every single day togther most of our childhood.

She was in my wedding, and I in hers. We wear the same size shoe, and she let me borrow her Guess! overalls in 8th grade. We met when we were nine years old when we were both best friends with Sue.

Kaycee has recently started reading this blog. I asked her if it was odd to have this relationship with me when I wasn't actually there. She said it is hard not to be close enough to hug me.. which is nice, since I need a hug on most days.

She said the hardest part about reading is that the person who shows up online is not the woman she knows. "In real life", she said, "You are the strongest person I know, fearless and constantly leading the rest of us, and online there is another part of you that is vulnerable and fearful and doubting yourself and the way you are taking care of Jake and Lucy. In all the years I've know you I have barely ever seen those parts."

hmmmm I was trying to figure this one out. I am thinking maybe it's because I try very hard not to burden my every day relationships with ALL of the crazy stuff in my head.. now if you choose to read, that's your own business, but I cannot imagine having any single friend who could possibly bear all of me. Just as I don't think your spouse should be "everything". You need a couple of friends who "get you" and some who like your kids, and some, at least one who likes your spouse. You need someone who makes you laugh, and someone who will hold your hair if you puke (from the flu or otherwise)... people to eat with, people who camp, someone who thinks you're sexy, smart, funny, whatever those words are for you...Descartes is a little of all of those things, but he can't hear it all every day, neither can my mom and she made me.

Grinding Away

Jake actually went to school part of the day today...

oh and just a note to anyone who ever goes on vacation... do NOT open the mail the minute you get home, because at 11 pm there is absolutely nothing you can do about the erroneous letter that states your disabled and institutionally-deemed child has been dropped from Medi-Cal, and the charge that someone fraudulently made on your MasterCard in Australia buying flowers, which you had already had reversed, has been put back onto your card because they do not have all of the proper paperwork. You can however pay your bills online if you must....or , like I did, you can marvel that after a crazy spending-spree kind of summer there is still money in the bank, and auto-pay is working just fine..

okay back to Jake going to school.. new aide in the class, same aide for Jake, same great teacher....and FOUR new kids.. making a total of 14 kids. Jake is the only one with a 1:1. I walked in and it looks like daycare. The new kids.. not a good match for the classroom. and one of them definitely needs a 1:1 if he is going to stay. I am very sad. If they add another aide Janet might be able to make it work. She is a great teacher and is very calm and has things under control... but if she doesn't? Well, I have seen it before that Jake's 1:1 suddenly becomes a little bit more like 1:2 or 1:1.5 because what is the aide going to do, not help? We fought hard to get him a 1:1 and he really needs it. think this year is critical for his development, and with 14 kids in the classroom I do not think he will a)feel comfortable and b)get the attention he needs. He is capable of academics, and if the class shifts more towards life skills (which he also needs, don;t get me wrong, I know my kid is delayed.. not in denial no need to "sit me down").. anywhoo if it is shifted to an all life-skills class I will be very disappointed. I am going to talk with the principal tomorrow and ask about getting the classroom another aide. The class list on the wall outside of the office lists 10 kids.. so they dropped those four new kids on Monday morning. Kudos to Jake's teacher for being able to figure out on the spot how to organize them into work groups for the activity centers.
okay must make dinner for starving Hawaii time children... just put them in the hose in the back yard. this 90+ degree weather is killing me.

Same. Same

 
Just like the Grand Wailea..'zactly like it.
Posted by Picasa

28 August, 2007

All Done Airplane

I am going to write out of order, since I cannot get my vacation notes online right now...

so we are home. great trip, hard trip.

Great trip:
  • family
  • water slides
  • gigantic drink glasses
  • diver scallops
  • sister's engagement
  • one-in-a-million nanny
  • Sage left barbecue in my fridge (meat is currently being devoured by my husband).

Hard trip:
  • water slides
  • panic attacks
  • screeching Lucy
  • apparently must take plane flight both to get there and come home
  • poop
  • no mai-tai or lei greeting upon arrival back in Bay Area
  • Housekeeper could not get into house while we were gone due to diligent door locking by house sitter.

27 August, 2007

On Island Time


SO apparently I am not as technically talented as I previously thought myself. It has taken me nearly a week to figure out that the reason I could not log the computer on in my room was due to the fact that I needed to let the hotel pick an IP address for me.. oh well. it is probably better this way, as now that I am online I realize that the connection is so very very slow. Perhaps it is the only thing that isn't grand about the Grand Wailea. I have stored a few thoughts, so I'll just post as I get the time...

We arrived last Tuesday. Hours ahead of the rest of our family, which is good since our children were done being close to other people or nice to anyone. We figured out that we are not going to Europe any time soon with these children at these ages.. and certainly not Australia, and probably not even the East Coast. I am not looking forward to the flight home... there is no vacation waiting at the end of that flight.

Now having said that I must also say that I am so proud of my children...especially Jake. He was such a good boy on the flights.. yes flights.. we had a layover and plane change in Honolulu. He was very cuddly and nice for nearly the entire flight from SFO to HON. In fact the only real problem he had was that he had to poop twice. Not sure if y'all know this, but airplane bathrooms are very very very very small. And my son is craptastic..and not potty trained. After Leelo's great potty training adventures I am inspired, and will be working hard for this when we get back, but alas we were stuck with one poopy boy and one small bathroom. He waited as long as he could. We had talked a lot that morning about trying to poop before we get on the plane etc. Then when he needed to go, he started to get the sillies and climb all over Descartes. He knows when he needs to go, just gets stage fright or something when he is there... anywhoooo all of the worst things happened, poop all over the place, Lucy only wanted Mommy, and Daddy can barely fit in an airplane bathroom by himself let alone with a 4 foot something 6.5 year old.. all this and Mommy forgot to take her crazy pill. We survived. Once you let go of the idea that children should not sit on the floor of an airplane bathroom you can pretty much get through most things.
So other than the toilet thing... Jake did very very well. Just played in his seat next to Daddy and ate every single possible snack we handed him. It was like a 5 hour snack session. The food on the plane was gross. So gross that Lucy actually took the turkey out of her mouth and very gently handed it back to me and said "No. No".. and my kids will eat just about anything.

We later learned that getting up at 4:30am CA time, after a poor night's sleep, travelling all day with small crazy children, skipping lunch, then adding heat and alcohol, well, it can make Mommy and Daddy a little bit wobbly.
We made it though.. all the way the Kahaluhi Airport Maui...got our rental car and landed safely at the Grand Wailea. Our room was ready early. And whoever thinks this room has no ocean view... they are crazy. That is Molokini and Kahoʻolawe in the distance. Our room is perfect with a door that opens to my brother Gerard's room so Pinky and I can share hairspray (ha ha) and little Bubsy and Lucy can play with all of the toys those good parents brought for their daughter.

20 August, 2007

Back to School!

A link to an article about getting Special needs kids ready to go back to school.

18 August, 2007

Who do you THINK has your Vote?

My lovely husband just told me about a very very cool site where, by entering your feelings on various subjects, you can get an idea of which presidential candidates fall in line with your way of thinking. It is flawed of course because you can say that something is important or key to your personal platform, but you can't say that one subject is 10X as important as another issue. You also can't say things like "I want a candidate who has some sense of International policy", or "I want a candidate who is not-Mormon". (This is my own, very large bias.)

So go ahead Choose Your Candidate then let me know how close it is to who you thought it would be. I wasn't surprised that Mitt Romney and I are pretty far apart..pretty much if embryonic stem-cell research is important to you then most of the Republicans are out...except for John McCain. I have always sort of liked McCain, maybe it's because he goes on the Daily Show with Jon Stewart, or because he is one of the few Republicans running who is against warrantless wiretapping, torture and Guantanamo. Giuliani and I don't have a chance together according to this little decision matrix. And Tancredo, well he, (she?) and I apparently couldn't be farther apart. And since I didn't who it he was until I just Googled him..guessing he wasn't going to get my vote any whooo.

Back to that website...when I went through quickly, without weighting, it appears that my personal platform is near the purported platform of Kucinich, Obama and Edwards. Then Clinton and Gravel...Gavel? who the hell is that? So Descartes says to me "Kucinich huh? Could you pick a candidate with a slimmer chance of winning? I think not."

Hey. I'm not voting here, I was just playing a little game...

The whole thing is a bit sad honestly. I really am at a loss this time around. Good thing I have over a year of listening to political blah blah-ing to make up my mind.

On a Roll

we are having good days lately..must be something to do with me feeling sucessful with work, and with trying new things with my kids also Descartes is more relaxed lately...he's starting to think about relaxing in Hawaii.

So on Friday after trying the new tether with Jake and successfully shopping with both kids (as I have heard this may just be a miracle with two typical kids... so I felt extra good about it) I was able to meet my friend Sage for lunch. I had called her earlier in the morning and when she phoned back I found out that she had only one of her kids, but two kids of another friend of ours. So the whole gaggle of us met at Johnny Rockets. I am not about to say that it is the best food in the world, but Jake and I used to go there every single Wednesday (early day at his old school) and eat lunch together. The staff learned enough about us to bring me an iced tea without asking, and vie to wait on us since I always leave a big tip (it goes along with the messy table). When we walked in this time, my waitress said "Oh she is so big (about Lucy) She just turned one, how was her birthday?" How cute is that?

SO anywhooo we were able to take over the back booth and Sage and I proceeded to order copious amounts of french fries, and were able to speak a few words to each other between getting kids to be okay (and they were all SOOOOOO good)..then even better.. Got to see another friend who was there at the restaurant. random

and so very nice, because our dear other friend is in chemo right now. breast cancer... nasty stuff that chemo, makes you lose your hair and all, but let me tell you (as I told her).. she looked damn near radiant with smooth skin and her same clear happy eyes and her sweet laugh, and her joy... she is the kind of woman who is joyous. It is almost palpable. I'm not sure if it is faith, or a strong marriage, or a strength born of many trials, but whatever it is, she is one of those "good eggs" and someone I love being around..plus she thinks I'm funny...and she gets all of my wise-cracks.

We left Johny Rockets and made our way over to one of the other Mama's house (the one who owned two of the kids Sage had with her) and proceeded to play.. and eat Otter Pops, and talk and wow, my kids did great and the other kids were precious.. and I can do this.

I am just so lucky to know these great women, who get me and love my kids. It has taken awhile but there is some sort of somethin' somethin' going on for me, some good combination of things.
I think Descartes and I have some great plans for our Jake this year
good times...good times

17 August, 2007

Ready, Set, Relax

Turned in a part of my project last night very late ...so I got to spend the day playing with my kids..what joy.

Tried a new "tether" on Jake. Basically, actually I was going to write down what exactly I did, but thinking more carefully after writing this entire post. I am going to perfect the design and sell it...basically Jake is attached to me and Jake can have his hand at his side. It is adjustable for Descartes.

Jake was bugged a bit at first, but was much, much more relaxed for the (quick) grocery store run. I talked with him about how it may be uncomfortable, but it was still a lot more comfortable than holding mommy's hand the entire time.

I was so ready for evil looks from people, and you know what? Only three people noticed. Two of those were little twin boys about Jake's age...and frankly I think they started looking at us because Lucy kept saying "Hi buh, Hi Buh" which is "Hi boys". The only other person was a 40 something year old woman who gave me a look like a therapist seeing a good tool would look. Sort of "Oh. Wow. That is a very simple fix to a very complex social, behavioral and developmental issue."

I am so glad I finally sucked it up and tried it. I have been so terrified that I would need to decide which kid to "save"..and I'm sure I will still think some of that, but it is nice to know that I won't need to chase Jake around a Safeway store.

I am going to perfect this design.. after I see that it works a few times. I did need to watch his toes on the cart wheels and his hands on the products on the shelves. .but no mishaps and got all of the things we needed.

The rest of our day got even better with lunch with Sage and old friends and kids playing and Otter Pops etc.. will need to detail to morrow as I am sososososoos sleepy now and my bed is covered with sweaters that I am not taking to Hawaii.

16 August, 2007

On Tuesday

I can't wait to sit in a
Mostly sunny place
Even with isolated showers.
as long as it is 68 to 89 degrees.
with East winds
gently blowing 10 to 15 miles per hour across the flower lined paths .

Chance of rain 20 percent.

Chance of a smile being on my face 100%

Rain Gear? Check. Earthquake Survival Gear? Check.

We are going to Maui on Tuesday... looks like the hurricane will be dwindling to a tropical storm... and that 5.4 that shook the islands? well let's just hope additional ones hold off while we are there, and that "The Big One" doesn't hit while we are away from California.. I would really hate our poor babysitter/house sitter to need to deal with our life earthquaked life whilst we are away.

15 August, 2007

K-I-C-K-E-D O-U-T!

It is going into the baby book.. I may even frame it for now.. It is official

Lucy has been kicked out of day care.


I will post the official letter I received just as soon as I stop fighting with my printer/scanner (that I just finished telling Sagewas so wonderful!)

KICKED OUT! Seriously... seriously? Jake was kicked out of a home day care too, when he was two. He was old enough to "count" as a toddler, but still needed the attention of a baby.. and Lucy, well the director thinks she "required more 1:1 attention"...

I think she is bored.. that is my guess.. I think she needs older kids.

But, uhm , yeah.. my NT kid was kicked out of day care.. oh and while I was talking with the director, Lucy let herself out of the screen door went over to a play structure, climbed up a ladder and went down a slide by herself. I asked when she started that.. and the director told me that "the little ones don't normally play on that one".. yeah. I think she's bored.
at least that is what I will tell myself 'cause I do NOT have time for a pity party about me and my special needs children.

Jeesh.. so I am thinking about putting her in a pre-school and lying and saying she is two.. they would only think she was a little slow...if she could just get potty trained this week we could probably get away with it!

************update********
here is the scan!

13 August, 2007

and I think I'm going out of my head

was seriously just going to write that Lucy finally went down for a nice long nap so I could get something done.. and I hear her CRYING... ARGHHHHHHHHHHHHHHHHHHHH

I am so frustrated today... maybe I am just sad because my sister Demanda and husband Jaster just left, and I just feel better when they are around.

hey no crying.. maybe cryBaby is going to give me a ten minute break to focus on work.


*****************2 minutes later *************
the dogs just barked at a phantom and she cried again.. maybe she will go back to sleep.

my head is about to pop off.

09 August, 2007

No sleep

can't sleep. I actually got out of bed. I even had a sip (really mama just a sip) of B&B accomplished one task: made car and driver reservations for our upcoming Maui trip..

In other news Jake has figured out how to climb across the chimney flues which are oddly enough stacked in our backyard and cemented together to form a retaining wall. (God knows what the previous owners were thinking?!)I had to tell him today that he could only crawl 6 feet out where the drop was only 5 or so feet from the ground, because even though he was able to make the 7 foot drop safely (the retaining wall has stairs beneath it so that the height starts at about 2 feet and ends at 12 feet) .. I told Jake that if he bonked his head then Daddy would be really mad at me. Which is true.
I was telling my friend AhHa (okay I haven't figured out what her name should be...) that Descartes is truly the mama bear in this family.

He follows Jake more closely, disallows Lucy from climbing etc. I guess at some point I realized that if I tracked every movement of Jake.,.. then add Lucy.. I would die. My buttocks would pucker so tight that I would just implode. I simply would not be able to live this life. So, for example, Lucy stands up in the tub.. (because that's what we do in the shower...hello inconsistency much?????) and Jake apparently can climb half-way out on the retaining wall. And I let Lucy eat sand that one time. And there are other ways.. but I think CPS is already tracking us :)

Nature Article about Autism Funding

Special report
Autism Speaks: the United States pays up

Abstract
In recent years, autism has become the golden child of the fund-raising circuit. Meredith Wadman looks at a US public-relations success that is driving research funds and expertise towards this childhood condition, and asks who is missing out.

Toni Braxton, Matthew Broderick, Bill Cosby -- perhaps not names you would associate with social or communication difficulties, and yet in one night, they helped raise $1.45 million at a fund-raiser for research into one of the least-understood disorders affecting children: autism.

Star-studded events such as that fund-raiser at New York's swanky Lincoln Center in April are the latest front of a public-relations battle to raise money for research into childhood diseases. In the United States, it's a battle that autism seems to be winning.

"I was sitting in the nosebleed section and it was $1,500 a ticket up there," recalls neurologist Gary Goldstein, president of the Kennedy Krieger Institute in Baltimore and chair of the scientific advisor committee for Autism Speaks, the group that organized the event. Goldstein recalls a 2005 Hollywood fund-raising concert featuring Jerry Seinfeld and Paul Simon."Every four months there's something like that, and that doesn't count all the golf classics," Goldstein says.

In less than three years, autism has emerged from relative obscurity on the fund-raising circuit to become the disease du jour. The 1,000 biggest US private foundations nearly doubled their autism-related giving to $2.7 million between 1998 and 2005, according to the New York-based Foundation Center. The Autism Society of America, the founding father of autism groups, has also seen its budget grow steadily to $20 million. More striking are the contributions of two newcomers: Autism Speaks alone raised more than $33 million in 2006,
its first full year of operation, and it is well on target to meet its goal of $55 million in 2007. And the lower-profile Simons Foundation, which began funding autism research in 2003, has spent more than $40 million and plans to spend another $100 million over the next five years.

The commonly held belief that the prevalence of autism is rising may be partly responsible for the cash flow. ...

But in the past two years, two people have had perhaps a greater impact on autism's visibility -- and coffers -- than any other single force, essentially rewriting the book on how to raise money for disease-specific research: Bob and Suzanne Wright, who founded Autism Speaks in 2005 after learning that their grandson had the poorly-understood condition.

Bob Wright, then chairman and chief executive of media and entertainment conglomerate NBC Universal, provided his business savvy and his extensive connections to a Who's Who of American stardom. He also brought urgency. "I know how devastating this problem is to families. I am reminded of it daily," says Wright.

In 2004, Goldstein presented the Wrights with a graph contrasting charitable autism spending, then at about $14 million, with the $100-million-plus raised by disease groups for juvenile diabetes, muscular dystrophy, childhood cancer and cystic fibrosis -- all of which are significantly less prevalent. "To move this field forward, we need that kind of money," Goldstein told them. Less than a year later, in February 2005, the Wrights launched Autism Speaks, which merged with the National Alliance for Autism Research and Cure Autism Now, in 2006 and 2007 respectively.

Today, the organization has 141 employees and thousands of volunteers in 41 states. "At the rate the group is growing, I'd be shocked if five years from now it's not raising $100 million a year," observes Goldstein.

Although there are other private groups focused on research and treatment, in the past the public's awareness of autism has not been as high as it could have been. "We were really out there by ourselves on awareness," says Wright. A public-relations coup changed that: last year, the group won a three-year campaign of free, slick publicity from the Advertising Council.

The New York-based Simons Foundation is a very different player. Formed by Jim Simons, a mathematician and hedge-fund billionaire who has an autistic daughter, the organization is spending tens of millions funding individual researchers. It's also financing a $12-million collection of genetic information and cell lines from 2,000 affected families that will be made freely available to other scientists. The database is called the Simons Simplex collection, and is to be stored at Rutgers University, New Jersey.

In 2006, Simons recruited Gerald Fischbach, the former director of the National Institute of Neurological Disorders and Stroke, as his scientific director. Taking the job, says Fischbach, was "a chance to focus on just the very best science".

Terrific scientists

According to Fischbach, the swell of interest in the disease has been boosted by new genetic techniques and imaging tools. He notes that 11 of the 18 scientists to whom the foundation will soon make three-year grants of up to $3 million are new to the field. "You couldn't attract terrific scientists if there were no good ways to approach the disease," Fischbach says.

There is a dark side to the surge in autism funding.

The upward trend in money and interest has been mirrored at the National Institutes of Health (NIH), where funding for autism research has grown from $22 million in 1997 to $108 million this year -- with 16% of that growth happening since 2003, while the rest of the NIH has been essentially flat-funded.

At the CDC, which in 2000 spent just over $1 million on epidemiological research on autism, spending has soared to $15.1 million in 2007. Even the Department of Defense is getting in on the act, spending $7.5 million on autism research this year, largely thanks to Autism Speaks, which successfully lobbied Congress for the money on the grounds that autism in military families costs more than $200 million to treat annually.

The most recent legislative achievement of the autism-research advocacy groups is the Combating Autism Act, which was passed in December 2006 after intense lobbying. It guarantees that the spotlight will stay on the disease, requiring for the first time that the government draw up an annual strategic plan for autism research, identifying gaps and opportunities, all with the input of affected families.

"The advocacy groups here have had an enormous impact," says Tom Insel, the director of the National Institute of Mental Health, which with its $62-million spending in 2006 made the largest financial contribution of the five NIH institutes that fund autism research. Insel, who also chairs an inter-agency committee that coordinates autism research for the federal government, says of the advocates: "They hold our feet to the fire, and make sure we are relevant and accountable."

But something distinguishes autism advocates, especially Autism Speaks. "They are actually raising very substantial amounts of funds to do a lot of the science themselves," adds Insel.

Bigger share

That fund-raising prowess has generated both admiration and envy from disease groups that could be considered competitors. For example, since the doubling of the NIH budget ended in 2003, NIH's cystic fibrosis funding has fallen from $117 million to $85 million; funding for childhood leukaemia from $70 million to $53 million; and funding for Down's syndrome, which is about one-fifth as prevalent as autism, from $23 million to $13 million.

"Why is Down's syndrome funding low? Autism I think is a big contributor," says Jon Colman, the chief operating officer of the National Down Syndrome Society. "It's dominating priorities."

Fischbach concedes that what's good for autism has to be bad for others that rely on NIH funding. As long as the biomedical agency's budget continues to be frozen year after year, he argues, pouring new NIH millions into autism necessarily means funding less research on some other diseases. "There is a dark side" to the surge in autism funding, he admits.

But other disease groups say that they have benefited from the rise in autism's profile -- some by learning from Autism Speaks' example, and others because autism can coexist with other, lesser-known diseases such as tuberous sclerosis and fragile X syndrome, which causes mental retardation. "People are beginning to talk about the probable genetic basis for most autism. And then often, if not always, they mention fragile X as an example," says Robert Miller, the executive director of the National Fragile X Foundation in Walnut Creek, California, who was pleased when a recent cover story on autism in Newsweek made a passing mention of fragile X.

But despite its new visibility and funding, autism remains a little-understood and untreatable disease, and it is unclear how much this well-managed public-relations exercise will change that. Insel is optimistic, though. "Autism has attracted the attention of the most stellar geneticists and neuroscientists," he points out. "So I'm hopeful."

------

Clinical Precision
Disease advocates should influence, but not dictate, research priorities.
Nature.com
August 8, 2007
Disease lobby groups have always made energetic efforts to ensure that the formidable resources of the US National Institutes of Health (NIH) are brought to bear on the health issues that interest them; and that is as it should be. When these resources are expanding, there has been room for most of the participants in the process to feel that they are winning. Now that the budget of the largest research agency in the world is effectively frozen, there are likely to be more losers.

In the case of research into autism - a common but poorly understood developmental disorder - effective advocacy has seen a generous increase in NIH support specifically targeted at the disease, even since the real growth in the agency's total budget came to an end in 2003. Unfortunately, some of autism's success may have come at the expense of research into other children's diseases (see 'Autism Speaks: the United States pays up').

Autism research also garners an unusually strong level of support from private sources, including funds raised by the disease group Autism Speaks and contributed by philanthropists such as Jim Simons, a mathematician and hedge-fund billionaire whose daughter suffers from the condition. This year, these sources will spend some $50 million - roughly half what the NIH is spending on autism research. Typically, disease groups can muster charitable funding that is only a small fraction of what the NIH spends (see Nature 447, 248-254; 2007). That leaves them scrambling for slices of a pie that is no longer growing.

The power of some advocacy groups must be tempered to some degree. Scientists, especially those involved in the basic biomedical sciences, are also scrabbling for a share of these funds. The NIH's success has been built on a tacit accommodation between scientists, who run its 27 institutes and centres on a day-to-day basis, and the public, as represented by Congress. Institutes have been established - often against the scientists' advice - to deal with specific conditions or diseases of particular organ systems. Then Congress has, in large part, left the researchers and physicians in the agencies to pursue their work as they see fit, without indulging in too much micromanagement.

This has enabled the NIH to maintain a formidable reputation for scientific integrity and excellence, while also appearing to be reasonably responsive to patient needs. It has produced an agency that does a great deal of basic scientific research - with unknown and largely serendipitous benefits for the development of drugs and devices - as well as plenty of laboratory and clinical work devoted to particular ailments.

The public is paying for the NIH's annual budget of $29 billion, and it is entirely appropriate that it should energetically articulate its demands of the agency. That is one of the roles of the disease-advocacy groups, and their input, as any NIH institute director will attest, provides invaluable assistance in assigning research directions and priorities. That said, the power of some advocacy groups must be tempered to some degree - especially in today's difficult funding environment. Otherwise, these groups' ability to influence budgets is likely to dominate, to the detriment of both basic laboratory science and of research targeted at diseases that have weaker constituencies.

It falls to the scientist-administrators who run the NIH to work closely with members of the congressional appropriations committees that fund the agency to make sure that this does not happen. Both groups understand the careful political balance that has allowed the agency to thrive; they must act as moderators whenever the more energetic lobby groups are pushing the agency's agenda too far in the direction of one public-health issue at the expense of others.

08 August, 2007

Night night Lucy

So LittleLucy went to bed tonight without nursing first. I have been a little worried that the girl was never going to get off the boob..now, of course I am already saddened and missing the idea of Lucy being a tiny baby...she's not anymore. I know, but until I stop nursing completely I can imagine that she is still a baby, just a little bit.

and when she is done nursing my body will be done creating and feeding babies. that is a very liberating thought... and one that makes me wistful too.

Nope.. two it is. done

Buried in Cotton

Seriously... how do we have so many items of clothing in this house? I am really being buried alive.

The only thing I can think of is that Jake changed sizes three times this last year (at least pant sizes) and Lucy is changing sizes about every three months too.

And I am now smaller than I was when we got married (which just means I was a cow at our wedding!) so I have clothing from size 10-16 plus maternity..oh yeah and I used to work for that giant clothing company that seems to be "falling into a chasm" not a gap (oh how i miss those days of "Oh my gosh you work there? Wow." We were the Google of clothing companies...beware Google!) so I already had a lot of clothing..

And Descartes, well he's the kind of guy who owns his own tux, and fly fishes, and hunts, and bicycles, and gardens, and he has all the gear for each of those parties..not to mention the ones he doesn't do often, but for which he is well-equipped (hey keep your mind out of the gutter!) like tennis, swimming, backpacking, house painting, car repair, rowing, and disco dancing (he has a blue ruffled tux shirt, just in case!)

I have been going through clothes this morning and I am giving Sage many things.. she will have a whole new pile of stuff to go through when she gets home.

07 August, 2007

old photo good laugh


I just saw this photo again and had to post it.. it is from Thanksgiving last year, so Lucy is 5 1/2 months.. my insane husband sent me the photo titled... safety is no accident...

and yes I think that Lucy is flipping me off.

yeah what- --ever

what ever I said yesterday about forgetting to take Wellbutrin.. HAHAHAHAHAHAH
this morning if I could have double dosed without risk of seizure I would have.

Descartes had to go to the dentist. He pretends like he is not anxious, but I know he is. He just says "I don't want to go". Basically he was very quiet and needed an abnormal amount of prompting to help get kids ready today. He is so good with them in the morning these days that I realize it now makes me a bit irritated when he isn't, poor guy.. just can't win :)

and I am going to try to work on my project today... and pray that Lucy does better at childcare so that she may be able to stay the rest of the month. That is a longer story.

and Jake's aide doesn't come until noon.

and the housekeeper comes this morning, so I am instantly reminded that my house is overrun by clothing (all clean, but still) and I am a failure because I can't even keep my own damn house clean by myself.

and Jake ran FULL STEAM into my ankle this morning. I can apparently handle having my ankle twisted right from under me, or I can handle being stabbed by two troll toenails, but I cannot apparently handle both at the same time without tearing up and wanting to swear, and dropping nearly to the floor in pain. How did I ever give birth? Then he fought me with every single pant leg off and new pants on... then a bit more with a new diaper,

and made me chase him to put his yogurt/meds combo. (this last one being a job Daddy has been doing mostly.. so it was extra irritating to have to chase Jake with yogurt/meds in a bowl with Lucy following and yelling "that, that, that, THAT" because she wants some too. and she can't have even a bite because it has time release Adderal in it and it would do God knows what to that little hellion!)
and so
I am off to take Lucy across the city to her little daycare.

06 August, 2007

Little Lucy, Big Mouth

So Lucy really has been "talking" since she was 5 months old. I swear. She turned to Descartes and said "Hi Dada" in a whisper voice...after I whispered into her ear. Really.

I am obviously obsessed with her development, not only because that is what parents do these days, but also because I am so, so NOT going to miss it if there is a moment when she starts to veer toward special needs. We will catch it and therapy the hell out of her..right, hell I think she is a special needs kid all right.. she is making me insane with her cute little abilities. Basically she is fine, more than fine.

She is a 13 1/2 month old crazy little monkey who on Friday knew these words:

  • Momma
  • Dada
  • Jake
  • Dog
  • Dora
  • this
  • that
  • doll
  • fish
  • bye bye
  • night night
  • hi friend (barely distinguishable)
  • Where Jake?
  • more (in sign language)
  • all done (in sign language)

then on Saturday
she added:
  • hold this
  • all done
  • uh oh
  • please (in sign language only)
  • here, this
  • Manda (my sister)
and that's all I can think of because I am too tired. Oh and we taught her how to color on Saturday.. but she still can't stack three blocks.

I am obnoxious.

Trigger Happy

So I find no shame in saying that I take Wellbutrin. See I said it. Okay, some shame...I need a crutch. My doctor said very nicely.."jennyalice, You are having very, very normal responses to a very extreme situation.. and I don't see the situation changing any time soon".

But what I have noticed lately is that I have been forgetting to take it sometimes, and here's why I think this is...

  • I have had consistent childcare, both in number of hours and with the proper nurturing of my children.
  • I have been giving away and throwing away things from my house to try to dig our way into a cleaner easier life.
  • I have been completing some contract work.. for that same beautiful SF company.. and they appreciate what I can do.. and pay me accordingly.
  • I have a "new-ish" group of friends who are very supportive and brave and funny and who appear to like me.
So what I have figured out is that I need a few things to feel human: a little time away from being a mommy, a little control over my environment, a few moments where someone thinks I'm smart, and a couple more when someone thinks I am funny. That's it. On a day when I can also add going to the gym, making dinner for my husband and reading a book.. well that sounds like a life of luxury.

Most days I get a "trigger" which reminds me that a little round white pill will make life a lot smoother...like I look into the unfinished backyard which I began to undo for my kids, but will most likely never finish, or I try not to get kid's poop into the cracks on my hands which are there from washing my hands so much because I change so many diapers.

Some days the "trigger" comes at 4am when Jake is wandering the halls and I am unable to get up to help him because I still have Lucy nursing for what seems like all night long for these 13 months of her life.

Whatever it is, lately I haven't noticed those "little" triggers, the days aren't as tough when I have some of those other things going on. hmmm....

03 August, 2007

Hey! Nobody Drowned!

Went to Squid's amazing house the other day..with both of my children... and we all went in to the pool and they are both still alive!

I know this sounds sort of dumb, but I am still really having a hard time taking both of my kids places by myself. I know I need to get over it, but I am so terrified that I will need to choose which one to save. Do other mothers with NT (neuro-typical) kids have this same gnawing feeling in the back of their mind?

Jake is so much calmer than he used to be, and Lucy is rather capable, but I am still mostly amazed that there haven't even been any close calls. Maybe I am getting better at this.. or maybe I have been hiding out at the house for most of the summer under the guide that I have "a lot of work to do".
Related Posts Plugin for WordPress, Blogger...
all writing by me © 2004-14 (unless otherwise noted)
The opinions on this blog are my own, and in no way represent the many groups, foundations and communities with whom my name may be associated.