Sunday, December 30, 2007

WII Games my kids love and hate

Since I obtained a WII through my blog connections, I figured it was only fair to blog about it.

  • Super Mario Galaxy - my daughter is amazing at this game
C hates it, so we bought him some Orange Box thing - the best value in videogame history it touts. So far it seems to me like Half Life whose name I only remember, because it's a fun name for a first person shooter game
  • Lego Star Wars - still going strong though I bought it for them as my birthday gift near Thanksgiving. They laugh and laugh at this game. They never tire of the jumping and running around. My husband is amused by the Star Wars story.
  • Guitar Hero though they both love to watch it, not play it.
  • Boogie - thought it's not so fun for me, because I have to sing "Doncha" over and over and over again. I wish WII would come out with a real karoke game.
  • WII Sports - a surprise one, but my son still loves the fishing game and sometimes the shooting game, though sometimes he says it's too scary.

  • Cars - The voices and animation and crazy driving held my boy's interest for a while, but after a couple weeks he stopped asking to play it. It's not interesting enough to hold adult interest and he still needs an adult to play with him.
  • Zelda - "Too scary" say both of them, though they happily watch the Lego figures blow apart. My husband likes it, but not enough to play it when they're not around.
Crossposted to my LJ.

Thursday, December 27, 2007

Mostly good Christmas

I had a mostly good Christmas. A few rocky spots, but the kids romped through with minimal crying.

They did stay up until 11pm on Christmas Day and then Little T fell out of bed at 4am with a loud thump and woke up crying. This symbolizes my Christmas for me. Mostly peaceful with occasional and unexpected thumps.

I'm still figuring out where the thumps come from. Part of it is that we visit my parents' house very infrequently except during the holidays. Mostly it's all managing the kids so that stress is minimized. Little T in particular has a certain routine and when that routine is disrupted, he cries. For a typical kid, this would be just part of the holidays. With Little T, I get into this space where I feel he's wasting calories. A bad space. We're a few months away to removing the g-tube forever. A feat we've accomplished by not stressing about calories and just working on feeding him.

Little T ate and ate and ate at my parents. I've never seen the boy eat so much. Honestly this was the highlight of my Christmas. I say this not to minimize the other joys of Christmas, but just that seeing him eating with such gusto after months and months of struggling with bags and bags of messy formula and vomiting and reflux filled me with such joy and pride.

Another joy was to see my little niece so healthy and active and curious and to watch Little T's utter adoration of her. He seems to regard her as his younger sister. In Burmese, there is no word for cousin, your cousins are your brothers and sisters. That's clearly how he feels. He loves babies in general. But he greets my niece as if she was the best baby on earth. She of course responds with a joyful smile. My niece doesn't bestow her smiles on everyone. She's a serious intense little girl who has things to grab, people to look at. It's funny how even at 6 months, personality is clear. Even as a newborn, she gazed at you with great intensity.

I had other joys and other rocky spots, a personal rocky spot -- my wrists and hands just gave out at about 7pm last night and started just aching a lot. A wrist soak and stretches and a good night's sleep got them to tentative okayness. But they are on the edge. Typing is one of the least stressful things I can do with them. Even so, I will rest them and end this post.

Monday, December 24, 2007

We hold it within ourselves to be good family

My package for my parents has spent Christmas eve sitting in the UPS warehouse about 40 miles from our house, so alas not in time for Christmas. I ordered in on Dec 18, so UPS does not get my Christmas cheer this year. But it does mean we will visit them again once the package arrives, so I guess it is good cheer for my parents.

We did avert one Christmas crisis by buying the last two Christmas puddings at Andronico's. Otherwise my mom would make it herself which takes at least 7 hours. I kid you not.

But the kids are really excited this year mostly about spending time with extended family and that's what Christmas is about for me. A friend who's had a particularly hard year this year blogged "We hold it within ourselves to be good family." And that's what I strive for.

Personally I don't care if we have Christmas pudding or not, but it matters a lot to my dad. So after a lunch with my brother's in-laws, we drove to Andronico's. My son was already fast asleep and my daughter who normally loves shopping refused to leave the car. I thought about whether to spend the wrist points to get out of the car and carry those puddings. My husband offered to do it. I briefly wished my service dog was already here. But I decided that getting the right pudding was worth it and my husband doesn't know about Christmas pudding. So off I went. I returned and discovered they had overcharged us. My husband just said he'd go back. He understood the cost to me to go back again.

My mom only vaguely understands my daily pain and my dad not all. My service dog may teach them. I have no idea. But I've decided it doesn't matter. My children don't understand the costs of the things I do except in vague terms. Sometimes we talk about wrist points. And I don't really want them to. I try to be good family.

Friday, December 21, 2007

The flush of pride

First he started toilet training at school and now the past two days at home. The exact details are not fit for a blog that I assume one day he will read. Cognitive ability has never been one of his problems. Anyway what I will say is that it involves standing on a little blue stool and a look of pure pride and joy on his face.

It's very difficult for him to maintain his balance with his one arm. I'm so proud of him. I think he's very brave. But then he's always been incredibly brave. Flushing which seems to scare most little kids fascinates him.

And my children are the only people I will hug after such an activity and before washing. But that's mother love for you. No photo again for obvious reasons.

Tuesday, December 18, 2007

Lifechanging news, exciting news and commenting

My first and best news is that I will getting my service dog in February. I was invited to Team Training at Canine Companions for Independence (CCI). It's the best holiday gift I've ever received!! I feel incredibly excited and blessed.

Around the New Year CCI will send me an enormous binder chock full of info basically everything I'm expected to learn in Team Training, so I expect to blog more about this. Not the contents themselves since that belongs to CCI, but rather my reactions to it all. I should note that CCI has a pretty strict policy against not revealing the name of my dog or identifying details about my dog until graduation which will also be my sixth wedding anniversary. My human partner has graciously agreed to share the day with my new dog partner.

I do like the CCI logo a lot, but as it involves a person in a wheelchair, it doesn't seem quite appropriate to put in my blog as I'm not in a wheelchair. I know it's the universal symbol for disabled or special needs which I definitely claim. And I even have a disabled parking placard. Still I'm at a loss what picture to put for this post, since I don't know what my future partner will look like. Oh well.

Not life changing, but exciting Peter Jackson will be producing The Hobbit in 2009 in a two part series.
It was my extended family tradition to watch Lord of the Rings each Christmas.

Of less importance to me personally, but of import to readers of this blog, you can comment now using Open ID.

Saturday, December 15, 2007

Here Comes Another Bubble popped (sorta)

I'm annoyed that one of the funniest Youtube videos to come out in a long time "Here Comes Another Bubble" by the Richter Scales was taken down on request by the DMCA. In the meantime, all Youtube has is this very poor quality video of a live performance where you can't even hear the lyrics that well, but it's the best I can give you as an immediate link.

According to the Richter Scales blog,
the video was taken down because Lane Hartwell complained it used her copyrighted images of Owen Thomas, a tv reporter for heaven's sake. So he's a public figure and therefore his images are in the public domain. Ironically the video's still at Valley Wag. (at least when I blogged this post)

I'd like to know which videos on youtube don't use some copyrighted images of public figures. Youtube would go out of business if every video had every copyright checked.

I replied tongue in check on the blog that I think if they hadn't made fun of Larry Page and Sergey Brin the founders of Google who own Youtube, it might have stayed up. Since Silly Valley is about this big, I'm actually friends of friends of the founders and I think they have a sense of humor, but people are afraid. And frankly it really is a bubble.

How I can resist but to blog about a video with several men singing "Won't you blog about this song" in lovely acapella tune? Plus the video includes a baby blogging.

Richter Scales, I wish you well and I hope your bubble video gets back up on youtube.

Up with Internet Freedom and satire. Down with silly legalese. Satire is protected under free speech. Get a clue Youtube and DMCA.

Friday, December 14, 2007

Dear Santa Paws

I've been a pretty good girl this year. Here's my real wish list

1. No more hospital stays for Little T. I know a year is a whole lot to ask when we have only managed a few months, but that's my biggest wish.

2. No more visits to the ER or Urgent Care. Yes you gave us fewer than last year and they were not nearly as scary as previous years, but I'd really like none next year.

3. Little T's g-tube to be removed forever. His GI doctor says he's close - maybe 3 months and maybe that will allow my first two wishes to happen.

4. Better health for my parents

5. A service dog of my very own

6. A path to writing success

7. Peace for my relatives who struggle everyday just to get by

Thank you very much for your gifts this year including, but not exclusively:

1. Little T's improving health and learning how to talk

2. Little T's wonderful preschool teacher

3. Special K's love of reading and thriving in Kindergarten with her own wonderful teacher. And Special K's continued good health. Something I sometimes forget to mention, but never take for granted.

4. My friend L who drove me and my kids all over the place until I could drive myself and has in many other ways been a true friend this year.

5. C finally feeling things are okay enough to go ahead

6. My brother's healthy baby girl who also seems very bright and curious and social. Little T and she adore each other. As if in solidarity, she even has a hemangioma on her left arm, though hers is harmless like 99.7% of hemangiomas.

7. Our prosperity when others around the world including my own relatives have so little

8. Although I am never pleased to see horrible violence, I'm pleased that the world has noticed Burma just a little.

9. All the kind CCI people who showed me their dogs or sent me photos of dogs this year or wrote to me about dogs. You make waiting just a little easier.

Tuesday, December 11, 2007

The Newshour in HD brings me joy

I got an email last night from KQED that McNeil Lehrer...sorry.The Newshour with Jim Lehrer will be in HD starting 12/17. This makes me far more excited than it should.

C says "it's not like broadcast news where they have sexy anchors." Do I really want to see Jim in high definition detail? I do. Real news is not pretty or glamorous. It's like Jim, who's been around the world.

Happy Holidays, Jim. Please don't feel you need extra makeup or anything. We love you the way you are.

Friday, December 07, 2007

Reluctant Lactivist

I found out sometime last year that I'm a lactivist or at least the NY Times told me so.

Ironically when the article came out, much of my breastfeeding was a very private affair. You see, I was almost exclusively pumping due to my son's health problems. And there's really no discreet way to pump in public. Only Madonna wears huge breastfeeding horns in public.

My son would breastfeed once a day but only in the most private of circumstances. A dream (not a wet one) of those who would ban breastfeeding from public places.

But I never felt dirty or embarrassed breastfeeding. I've never received any comments or dirty looks or been asked to stop. Most of the time the world seemed oblivious to the fact that I was breastfeeding. With my daughter who has always been healthy and focused on food, we breastfeed anytime anywhere she was hungry.

Maybe it's living in Silicon Valley. Maybe it's because my Burmese mother taught me that breastfeeding was normal and natural and I watched both of my siblings breastfeed. Or maybe it's because I'm

half-British and so used to doing things discreetly. But I'm a lactivist, because I believe that women should be allowed to breastfeed in public. I also think breastfeeding should be discussed and taught to all moms.

I think breastfeeding like dancing is something you learn by watching other people do and doing it yourself. It's not something you can learn from some book. Also like any dance, it takes two people and while it's not PC to say so, some partners just can't dance. My breastfeeding dance is frankly more like the funky chicken then the graceful waltz found in the La Leche guides, but it took my son a long long time to learn to latch on properly. If he had been my first, I'm not sure if we would have learned to breastfeed successfully. But my daughter came first and she was extremely eager. The second try she latched on and would not let go. Hoover and barracuda accurately describe her breastfeeding style. So I was an experienced partner by the time by my son was born.

One thing did bother me. The article states that some lactivists compare public breastfeeding to gays holding hands. Once when I held hands with a woman, I got a shocked look. So the reactions I've received personally are the same. And in some states both can put you in jail. However I've never heard of a woman being beaten up or had her life threatened for breastfeeding in public.

Crossposted to Silicon Valley Moms Blog

Tuesday, December 04, 2007

How do you take holiday photo cards?

As you may have read before, I have photo phobia, and holiday cards are no exception. Try to get two small children to look at the camera and smile at the same time. For me, it involves me singing Christmas carols and bribes of candy. Even then the photo comes out looking like I have two slightly deranged children (mad usually only when trying to get them ready for school or photos), instead of two adorable children (which they are most of the time). As you can see, I have photographic proof that my children can look adorable at the same, but they're not looking at the camera. And the dear friend who took this photo has other things to do. This was an entire afternoon of her time.

Does anyone have tips for me?

I took over 30 photos with the digital before patience gave way. I'm not sure if it was me or the kids who were more sick of the whole process.

Don't you love when they change things w/o telling you

Well LJ has been sold to Russia which they did announce. But it seems like Google decided to enforce a stricter password scheme without telling anyone. Just one day I couldn't log in. Grrr.

Thursday, November 29, 2007

So happy about my tea

I'm so happy to learn that my favorite tea Tetley advertises at least on its website "Tata and Tetley not only share a passion for tea but also a commitment to operate as a responsible business. Use these links to find out more about what we’re doing to manage our environmental, ethical and social impacts."

I had been debating if I needed to get a more expensive tea that I like less in order to have fair trade tea. I think fair trade is far more important than organic when it comes to foreign produce and of course tea doesn't grow here.

Wednesday, November 21, 2007

A really sweet video that shows the spirit of my daughter's school

Castro's celebration of getting off the Federal List of schools that need to be improved.

My daughter joined after the school was already off the list, but the video shows the great spirit of the school and why we love it so much.

Monday, November 12, 2007

Nerdy giving

I love Free Rice. Maybe it's because I achieved the maximum score of 50 and gave 570 grains of rice to UNICEF.

When I think about it, 570 grains is a pittance, but I loved playing the game. It filled me with nerdy joy, and I even learned a couple words too. I believe this is the first time my large vocabulary has directly resulted in doing good. I'm working on doing it both more indirectly, but today with both kids home from school on holiday is not a writing day for me.

Stop Junk Mail by going online

I used to spend an extra five to ten minutes a day sorting through junk mail. That doesn't sound like much, but it adds up and as regular readers of my blog know, I have a lot on my plate without filling it with junk mail.

The standard advice is to pay $1 to get the Direct Marketing Association to remove your address online.

But then all the rest of the advice I read involves writing. Not so! You can do a lot of online.

To remove your name from random offers of credit and insurance for five years or permanently. If you want it to be permanent, you have to sign and mail something in, but that's one time.

A company or charity that you have already done business with is free to send you mail at any time and also to sell your name unless you tell them otherwise. But do you need to write? No! Go to the organization's web site and scroll down to the bottom of their site. Usually in tiny letters at the bottom, you'll see a Privacy link. That link will reveal pages of legalese and usually an email address where you can email to be taken off their mail list.

For organizations I like, I say email only. For organizations that I don't like, take me off your lists. For all organizations, put me on your do not call list and do not share my information with any other organization even affiliates of your organization.

This takes about five minutes to ten minutes per organization depending on how hard their web site is to navigate and how fast you type. However IME each organization sends a piece of email once a month. So it's time saved in the end. Also you're saving trees in that the company is not printing paper to send to you and the US mail is not transporting that mail to you.

Wednesday, November 07, 2007

My son is running

Both feet off the ground.

Running running away

I've worked very hard for this day

that he can run away from me.

Some day I hope both kids will run faster than me

leaving me behind.

But I hope they will still return

at least for holidays.

Tuesday, November 06, 2007

Slimy yet satisfying

In the Lion King Pumbaa says "Slimy... yet satisfying." as he eats a large grub from a rotten log. This is how I'd describe the IEP process at the school district where my son was transferred. Our district has no program for his "low incidence disability" --school speak for we don't see many kids like this so we have to be more careful.

We love the special preschool he's in and adore his special ed teacher and like the other kids. And our son's already making measurable progress after only a month in. He's started to climb stairs without holding onto a rail. I thought he couldn't get more confident but I think I was judging him as a two-year old and he's three. He asserts himself more with words. He used to be quiet around other kids which I stupidly accepted as "just being a boy." Well he's not quiet anymore. And he was never quiet at home. This preschool is definitely the right fit for him.

The school district... Well. It's only two years. And we can work with them as long as we don't look too carefully at the whole thing. One the plus side they're organized in careful segments....

Anyway if I had to choose I'd choose this way. Because we're not moving anytime soon. Our older daughter loves her elementary school. And our school district special ed people are disorganized but so far warm and friendly.

Thursday, November 01, 2007

Pencils inspired our Halloween

After reading from a mom of a diabetic kid and thinking about how fat many kids are we decided to supply Halloween pencils stickers and spider rings for treats. We also had about 12 pieces of candy but those didn't go until the end.

Pencils were by far the most popular. "Cool! Pencils! I need them for school." exclaimed one boy. We bought 3 dozen Halloween pencils for a dollar a dozen and by the end of the night they were all gone.

It made me feel good that I was actually contributing to a child's education instead of their bad health.

I guess if everyone gave away pencils it wouldn't be special any more but Walmart and dollar stores are full of little cheap things. And maybe part of the reason pencils were so popular was that my husband was so excited to be giving them away. The kids had a choice but the pencils sat bright and shiny at the top.

Did you give something away this Halloween that interested you or inspired you? If not what could you give next year?

Sunday, October 28, 2007

I'm almost done so now I can get sick

We're on the home stretch of completing my son's IEP so my body has decided it's a fine time to succumb to those half cold half flu thingy. I have a stuffy nose and sore throat and a few aches but no fever. I sometimes feel incredibly tired to the point where all I want to do is lie in bed and sleep and at other times I feel almost human.

I don't feel quite sick enough to justify my husband staying at home so this has lingered on for exactly a week now. My son's IEP meeting was on Monday and I rallied enough to be fully present there. I also rallied myself to go riding later that day. The rest of the week I laid in bed until it was time to pick up my daughter and then looked after both kids until about 6pm when I just waited for my husband to get home until I could crawl into bed.

This weekend we missed four parties and may miss the fifth one today. Yet yesterday I deal with an insurance issue and also the lingering portions of my son's IEP.

I need to get better so I can have some fun!

Wednesday, October 24, 2007

Burning inferno

I feel most sad for all the wildlife dying out there and neglected pets and the firefighters who have lost their lives. This silly picture is for them and the CCI folks. I send my prayers to the people affected by the fire and the CCI dogs and people at the SW regional center. These brave folks are waiting in the path of two fires. The smoke and soot and air quality are terrible. They're staying there multiple nights in case they need to evacuate the dogs and cat and I think they mention bunnies? That's true dedication.

As a child of 12 I once had to evacuate one solitary cat from my dad's friend's house because of an avalanche warning. Unlike these folks I didn't have any animal carriers so I had to hand-carry this cat down the mountain. The cat was very worried and tried to claw me but I was well bundled up. The cat was so freaked that she jumped out of my arms and tried to climb up a snow bank. After that she realized that it was my arms or the cold snow so she stayed with me.

I know these dogs are very well trained unlike this cat but still it must be very freaky to them to smell all this smoke and ash. I hope they're all doing okay.

Pimped from Jed's blog

map of San Diego fires

Southern California Fire map

Monday, October 22, 2007

Look out world!

My little niece has started rolling over. I remember naively thinking that babyproofing didn't start until they learned to crawl. Special K at least milked every milestone for all its worth. As soon as she could roll she was rolling rolling rolling everywhere. Carpet wood floor no flat ground was safe from my little tumbleweed. Every little speck that I left on the floor was picked up and put in her mouth if I was careful. I told my brother all this. Hee hee.

Saturday, October 20, 2007

My daughter walked for miles and miles

My daughter walked from 1:30 to 6pm for her school walkathon. She took one bathroom break. Otherwise she walked and walked and walked. 54 laps in all. I'm so proud of my little Kindergartener who could. I talk about Little T's determination all the time because life is more challenging for him but Special K also rises to the few great challenges her life presents her.

She also got her hair sprayed pink which she said "was scary for me."

I have been trying to tell her that a lot of life is just persistent effort over time or walking around and around. You do get prizes along the way but mostly the point is just to keep on going. I guess she knows that lesson at least for now. Do I say how incredibly proud I am of her?

Thursday, October 18, 2007

Steps for Little T one huge victory

Little T can climb up and down the steps of his school bus by himself. His preschool teacher says she has worked with him on steps everyday. How she accomplished this miracle I don't know since in therapy sessions it has been difficult to say the least. Picture a screaming boy at the top of our stairs. Bribes offered and refused. Lots of "No" screamed loudly.

No screaming at school. But then it's hard to refuse his teacher anything. She makes it all sound so sweet and reasonable.

It looks like Special K will be a Daisy Girl Scout if we can find one more girl in the entire school to join the troop.

I really like being able to walk to Longs. I'm still perhaps a bit overly excited to have a Longs in my neighborhood. I think it brings back childhood memories of biking to Longs as a child and Longs was this wonder store full of delights like candy and Merlin the electronic game that all the kids wanted and amazingly my parents bought.

Wednesday, October 17, 2007

Bodies in motion

I'm thankful my husband made me tea and went shopping with me and Little T. Something he does quite a lot. He's really a very nice man.

It was good but a bit painful to get my back worked on. It was sweet to see that although I woke Tucker from his little puppy nap. He got up lifted his head and greeted me with a little puppy snuffle. To me it sounded like an "I know you and am happy to see you" sort of noise. It reminded me of how my children as young babies used to snuffle before they could coo at me. It's funny how in the end we're all mammals. I read this breeder's journal about her puppies learning the commando crawl. Oh yes I remember my kids learning that.

I loved visiting Little T's preschool today and seeing how excited he was to participate in "body class". The OT made it all about fire safety and engines. How could he not be excited. He laughed as he bounced on the big ball.

Tuesday, October 16, 2007


I'm happy because I kept Louie engaged 95% of the time yesterday during our lesson and he only tripped twice even though we were walking and we had a side walker too.

I'm thrilled that Little T is alive. A friend just wrote that yesterday was Infant Loss Day. I have no idea how or why he lived that first day but I'm so glad he's still here.

I'm pleased that the reason my butt still hurts is that the muscles are still tight and pinching a nerve. A good hard massage from my chiropractor Dr. Deb helped and I hope it will heal over time.

Sunday, October 14, 2007

My kids and cat fence keep my cat Mori young

Yesterday at Mori's annual checkup the vet said that Mori looked like a younger cat. He's eleven years old now.

Last year he went to the vet having snuck outside and been abused by a neighbor who was convicted of animal cruelty and had to pay my vet bills and serve community service.

For several days he dragged himself around the house like a very old man. We worried about it and gave him lot of very gentle petting and tried to cajole him to eat and drink.

Now we have built a cat fence for our back yard. Yes they do work but periodically he finds a chink and worms his way out again. So we walk around trying to find the 1/4 inch hole he's exploited and patch it up. It seems more like something to do than a discontent with our back yard. He always returns at mealtimes meowing at the front door or when called. And our other cat seems perfectly content to stay in our yard and has never once escaped.

The back yard provides exercise sunshine and a lot of ways to run around. He also comes inside and gets a lot of petting and attention from the kids. My daughter carries him around with her arms stuck out. He's so big compared to her that he's secure but it's very peculiar to see them together. Then he wants less attention so he goes into our yard again.

Tuesday, October 09, 2007

The two T's - Same age different species

Little T and Tucker the 12-week old golden retriever puppy are so cute and adorable together. They are about the same age in terms of social behavior.

I ask Little T "Do you want to see Tucker?" "No" he says firmly. "Okay but I'm going over." Then he stares fascinated at Tucker. "Look he's chewing a bone." he giggles Every aspect of Tucker is commented upon. Then he doesn't want to leave. "No I want to see Tucker." just as firmly as he said he didn't 20 minutes before. Ahh the life of a three-year old.

Tucker's owner said that Tucker used to follow her on the leash very well but has just started sitting down and she has to carry him. I laughed and I said "That sounds very familiar."

I read some leash training techniques to try to get Little T to cross parking lots. Not that I use a leash but Little T still tugs on my hands and it hurts or abruptly sits down. We have mastered crossing the street pretty well now but an empty parking lot is apparently terrifying. It amazed me that one technique worked. I walked in front of him and took both of his hands from behind and walked slowly at his pace. He walked this way for few steps. My back was grateful it was just a few steps. Then he asked to just hold my hand standing next to me like a typical kid. On the way back he just crossed the parking lot holding my hand the typical way. Apparently I needed to show him that I was going to get him across the parking lot safely without picking him up.

Friday, October 05, 2007

Pet therapy and Chiropracty

My chiropractor has the cutest little golden retriever puppy named Tucker. He's 12 weeks old and has just learned to sit and lick instead of bite. Not CCI standards. But gosh he's cute and loves a good belly rub.

I was actually bummed when my chiropractor said that I only needed to come twice a week cos I'll miss lil' Tucker.

Kicked out of the center

Little T got kicked out of the Regional Center. He's no longer officially developmentally disabled. Still has his special needs but he's one smart little boy.

Thursday, October 04, 2007

Thank you

Thank you Fenders Collision for fixing the latch on my car door so it shuts properly. You had the right tool and just screwed it in. And you all are so nice.

Thank you for the nice handwritten note my CCI friend.

Thank you Little T for having good vision even if you didn't want to cooperate with the optometrist.

Tuesday, October 02, 2007

Dear dog owner

Dear Dog owner:

My children love dogs. They really adore them in fact. Specific dogs that they know and trust.

You see my children recognize that each dog has his or her personality and training and that's how they judge dogs. I write his or her because my daughter always corrects me on the correct pronoun for dogs she knows. Both kids view dogs as sentient beings. My son greets dogs he likes by name. Both kids feel free to command dogs they know and expect the dog to obey. This makes for a much happier interaction as sometimes dogs do get over excited and forget that kids are two legged and not four legged.

My daughter thinks smaller dogs are "cuter" than bigger dogs but cute is only one factor in what makes a dog lovable. My kids' two favorite dogs are a lab mix and a golden retriever so clearly size isn't everything.

You say "My dog is great with kids." My kids want to make that decision for themselves after observing your dog. Please do not thrust your dog upon my children. If your dog is socialized your dog will not like it either. If my children take their time to observe your dog before they get close saying things to them like "You're afraid of dogs" will not help them get closer to your dog. If your dog is seen to be well trained or responds to correction my kids will approach your dog.

For those owners whose dogs are shall we say a bit excited? Perhaps your dog often strains on the leash or jumps up and is poorly trained or perhaps your dog is simply excited right now. My children can only judge what they see in the moment. These behaviors that you consider cute or harmless or expressing excitement can knock over my small children and make them cry. I don't think you should take it personally if my kids keep their distance. As soon as your dog settles down my kids will approach.

I've also taught my kids that some dogs work and should not be petted. For them these dogs wear a vest. They've also learned on their own that these dogs tend to hold more still. So if your therapy dog fits this description please don't take it personally if my kids don't pet your dog. They're still learning all the finer nuances of dogs. They're only 5 and 3 so they have some time yet.

Thank you for your understanding

Mom of two small keen dog observers and lovers

Monday, October 01, 2007

Little T's First day of preschool

Little T's first day of preschool went well. No tears. He just climbed up into that school bus like he'd be doing it all his life. He sat patiently as he was strapped into the vest.

The preschool itself apparently proved a bit of a challenge as his teacher said "he didn't want to go along at first but he was persuaded." But he was clearly not bored or missing my mommy which were my two biggest fears. I'm sure he'll learn the preschool routine. The first day is hard for almost everyone adults included.

Pictures when I get a chance. But as I learned with Special K's first day of Kindergarten. Post first. Pictures later. Or it will be two weeks after he starts. ;)

Sunday, September 30, 2007

Fun with supplements

In our ongoing effort to treat Little T we're seeing a "whole wellness doctor" who ran some tests to see what supplements he needs. The theory is he gets enough calories between what he eats by mouth and his g-tube but his body is so depleted from destroying his tumor and rebuilding his arm that he runs out of nutrients he needs to convert fat into energy.

As always we tried to balance what he'll actually eat versus what he needs

So yesterday we bought

  • Cod liver oil - Not just any cod liver oil but tested for mercury and other containments with a lemon flavor. It tastes like lemon oil with a hint of fish. It's actually quite nice. Today Little T asked for a second teaspoon even though his daily dose is one.
  • Gummi Vites -2 Gummi Vites provide not as much minerals and vitamins as his doctor wants but he wants it. His sister asks for them everyday.
  • Organic Carrot juice - a great source of beta carotene aka vitamin A which he needs more of and loves
  • Grapeseed oil for high heat cooking - apparently canola oil aka rapeseed oil is bad for you at high heat. Who knew?
  • Bifidus - We bought this earlier. It's a probiotic powder. We had to experiment a while to see how he'd eat it. It's a tasteless white powder but very goopy so it won't go down the g-tube and he doesn't like the texture. Today it went down easy in cream cheese.
Things we're still having trouble with
  • Zinc - The Gummi Vites provide some but he needs more for healing. I thought we had some good zinc lozenges from Trader Joe's that also provide Vitamin C. However today I discovered they also provide slippery elm aka aspirin. He refused it today so we need something else he will eat. Probably another trip back to Whole Foods to see if they have zinc lozenges without slippery elm that are more palatable to him.
  • Whey protein - He needs it to help him build more muscle mass. All his muscles are small and underdeveloped. We may have to keep searching for the right whey powder. The whey powder industry seems largely unregulated and I'm concerned about growth hormones and toxicity. So far he didn't like it in milk. I'm not sure if it's the whey powder or the medium. Special K said "it tastes bitter."
We'd also supposed to give him more nuts avocados and beans.

Being a complete geek I have a google spreadsheet to keep track of which supplements we're all taking each day.

Anyone have any tips for kid-friendly zinc or whey powder?

Friday, September 28, 2007

Dear smiley face school bus driver

You signed your note with a smiley face instead of your name. From how you wrote your note I presume you're the driver that will be taking my son to preschool.

Thank you most of all for taking the time to drive to my son's house ahead of time to make sure you know where it is. I can not tell you the thoughtfulness that represents to me.

Thank you for leaving me a beautifully written note with clear directions on what to do and your name and number.

I still don't know what you look like but I at least know you don't look like this: since you're both female and I can't imagine him leaving a note like that.

I hadn't realized until I read your note that was my secret fear. Thanks smiley face!

Mom sending her 3 year old for the first time on a school bus

Does anyone have any tips for me for further school bus happiness?

Tuesday, September 25, 2007

Just another ordinary miracle on Monday

Little T is going to preschool on Monday.
Little T is going to preschool on Monday.
Little T is going to preschool on Monday.

Yes I have to write that three times to believe it. I know it's ordinary for most folks. But three years ago I wouldn't have believed it. It's a miracle to me that my little baby has made it this far. But even at 1 week old the look of determination on his face struggling to survive showed he'd go far.

He will go four mornings a week on the special ed bus. I think it's the right preschool for him. It's a preschool for kids who are cognitively and socially typical but have physical special needs.

Four mornings a week I will have an empty house.

Lest anyone think I will sit around and eat bonbons since after all we SAHMs have nothing better to do. I still have some ongoing issues to deal with. Ironically much of these involve ensuring his success in preschool and beyond. Oh yes and I have my own sadly neglected health issues to deal with.

Three years ago my baby was still in the NICU. We went to the 25th NICU grad party this weekend. Doesn't he look like a preschooler now?

When I said I was going there my dad said "I don't like to look back and remember." I think my dad is missing out on seeing how far my little guy has come.

An apology to Louie

Dear Louie
I am very sorry. I let you down. I was scared instead of trusting that you'd keep me safe. You've always kept me safe. I didn't mean to. It wasn't something I thought about. Falling down when in doubt is what I've always done. Trust is harder for me.

I still remember the stunned look on your face as you stared at me lying hurt on the ground.

I also want you to know it's not your fault that I came off or that you spooked. The log falling down was pretty startling. The log crashing against the metal garbage can was more than any guy could bear especially a sensitive guy like you. Even so you didn't buck or anything. You just backed up twice. I didn't expect the second time or the incredibly loud noise.

My husband is also really sorry too. It's why I've held off posting this but I think my apology to you is long overdue.

You are indeed a very special horse and very trustworthy. I do trust you. I will really try to do better next time.

Lots of love

My son already outperforms me

Hooray my son's EEG is normal!!! I'm totally stunned! *My* EEG isn't normal. I guess that makes him smarter than me. But isn't that every parent's dream? :)

Monday, September 24, 2007

Reading to Dogs

I'm excited about the Reading to Dogs program. I still remember my sense of wonder when I learned how to read. How suddenly all the billboards in London had messages I could READ.

I taught my sister and my daughter to read. I was involved in a literacy program back in college. I just think anything anyone can do to encourage reading is very cool.

Friday, September 21, 2007

Maybe another miracle today

Preliminary results look good for Little T. Not only no seizures found but the neurologist said his EEG was "completely normal." I'm still wishing on my CCI dog star that he doesn't find anything on closer examination.

I don't have a normal EEG. So if after all he's been through my son's EEG is normal I consider it a miracle.

Thursday, September 20, 2007

I got a CCI dog at the hospital

A CCI service team that I met at the graduate pool party was at the hospital last night for a pet therapy session. What a total transformation. He was Mr. Service Dog lying still in a proper down position with his head held high. He clearly loves his work and to play. What amazing dogs!

Still waiting to see if my Little T wish came true. Maybe. We'll find out more later. But having my service dog wish come true unexpectedly and not at all how I planned has given me hope. Aren't most gifts like that?

When will a president care about the fat and sugar offered to kids every day by the US government?

I am worried that the school will make my daughter fat and unhealthy with bad food choices. Is she going off to college? No she's going to kindergarten.

I looked at the school lunch menu for the entire months of August and September. I see items I might feed my child once in a while like hamburgers but not every day. During the Reagan era ketchup was declared a vegetable but I thought perhaps naively that things had gotten better with all these drive to get healthy. In fact at the bottom the menu declares in bold letters "Off to" (in an apple) A great Start" I also thought I could control whether or not my daughter ate lunch at school by choosing to give her money. No now they have a new convenient "card swipe system" so my child needs no money at all. It's a heavy burden for a five year old to make healthy choices and I am disappointed but unsurprised that I see so few healthy choices to make. The government rails that kids are fat and then offers them a host of fattening food subsided for $.40 to low income families. When will school meals actually become healthy instead of a victim of special interest groups? When will one of the presidential candidates actually speak up about this issue? I am listening and waiting and I am angry at the hypocrisy.

Here's Monday's lunch menu:

All white meat Chicken Drummies w/Tots Corn Dog (full of fat and nitrates) (some form of deep fried processed meat is offered four days a week one day a week the nuggets are baked whee!)
Reduced fat Pizza (offered twice a week)
Mini Twin Cheeseburger (offered twice a week under a different name)
Turkey (nitrates) and Cheese (processed) on whole wheat (a sad rather soggy sandwich).
Salad mix (a sad affair of iceberg lettuce and a couple carrots - offered twice a week)
Carrot Sticks with ranch dressing
Corn (buttered and heavily salted)
Mixed fruit (a fruit salad drenched in corn syrup - some form of fruit in corn syrup is offered every day)
Offered every day

1% Low Fat
Non Fat Chocolate

Now it's not that I expect the government to understand or value organic produce but to me "Off to a Great Start" implies more than just offering 3 types of fruit every day. What about some pasta? I have yet to meet a child who doesn't love mac and cheese. What about bagels?(Oh but they offer that twice a week at breakfast) along with Cinnamon roll Pancake on a stick and other ways to give your kid a great sugar high for the rest of their day.

Today we had a somewhat disturbing conversation to me. "Is it true that you need to drink three cups of milk a day?" she asked. I blinked a bit. "There's a cow in the cafeteria... A picture of a cow." she added hastily as she interpreted my gimlet gaze as perhaps thinking there was a real cow in the cafeteria. Instead of I confess I was thinking hormones from nonorganic milk. I take a deep breath. Well maybe a little hormones aren't so bad. Then she continues "I love chocolate milk. I dream of chocolate milk in class. I dream everybody except the people are made of chocolate milk."

Sending my oldest child my daughter off to kindergarten brings with it a whole host of worries. Will she enjoy kindergarten and learn? Will she make friends? Will her teacher like her? But all my typical fears have been addressed. She comes home each day excited and happy. But I did not expect to worry about her health.

I have solved this problem by telling her the school cafeteria is completely out of the control of the school. True. That she goes to a wonderful school. But the school lunches are terrible. And the school has no choice in the matter. It works for a five year old. But I think about other parents who go to the school. The one who qualify for the $.40 cent reduced price lunch -- a really low income level. Or even those who are at a slightly higher income level for whom spending $3 for lunch versus spending the money to get a proper lunch is an issue. I think it's fundamentally unfair. I also get angry with people who argue that kids will only eat fat and sugar. Sure that's what they'll eat if that's the only thing on offer.

Friend's blog banned from hospital

Chicago Moms Blogger Mary Anne's blog from my son's hospital. Her blog now contains cute baby pictures,but yes she does write porn.

I'm amused by the idea of a hospital blocking cute baby photos and a bit sad since they do brighten my day.

I understand that the hospital doesn't want people even parents viewing photos of porn in what is essentially a public place.  Even in my son's room people walk in and out all the time.  I do agree that seeing a porn image without one's consent is sexual harassment and doesn't belong in a hospital,  especially a children's hospital.  But I read her mommy blog posts only. And I can read this blog and any other Mommy blog to my heart's content and some even talk about *gasp* sex. Ironically Mary Anne recently wrote a post Things I'm Scared to Blog About.

Don't worry Mary Anne. They're much more scared of you. I wish there was a better filtering system. What people *read* on their own PC or laptop is their own business and reading is something one has to make an effort to do while an image is something one can see inadvertently. I'm not sure what the answer is.

Do you think I should be able to read Mary Anne's blog from my son's hospital?

Sunday, September 16, 2007

If wishes were dogs

"If wishes were horses beggars would ride" is an old old saying.

Today I can't help wishing that wishes were dogs. On Tuesday my son will go to the hospital for 1-5 days for testing. A parent has to be there at all times. I can't help wishing my service dog could be there. My dog whom I don't have yet. A dog who could sit there and be a friend to us.

I include no photo since it doesn't matter what the dog looks like as long as the dog is patient and loving and can sit for a while.

But I'd also have to wish for proper training and the right dog for me and my family. A lot of wishes that I can't make true right now. It's just the way things work.

Instead I spend my wishes that my son's stay will be short and relatively sweet.

Thursday, September 13, 2007

Little T clocks another hospital stay

The want of this little thing caused Little T to clock another hospital stay - his shortest to date but it started at 7pm in the ER and ended around 5:30pm the next day.

His g-tube/feeding tube fell out and we didn't notice until the hole had already started to close up. We had a 2-hour window. Poor guy had to have a minor operation to redilate the hole and put another g-tube back in.

This happened within a day or replacing his g-tube which we're supposed to do every 3 months. We're not sure if the g-tube we replaced it with was defective or if our replacement technique didn't inflate the balloon all the way.

C was kinda sick before staying up most of the night and got to spend his birthday in the hospital. Now I'm sick. I actually ran a fever two nights running (unusual for me) and am now (hopefully) getting over it.

We're in the process of weaning Little T off the g-tube and his GI doctor kindly came by to talk to us about ditching it but Little T currently gets a third of calories through there and his GI doctor says that even after complete weaning he like to wait three months before removing the tube just in case.

Oh well.

Apparently a therapy dog came before I arrived and C said Little T was completely uninterested. I would have been interested but I'm also more interested in the dog's role. I think Little T would have appreciated my (future) service dog being there. However he's not that interested in random beings. He's had a lot of that in his life. Nurses and therapists and doctors during his several hospital stays. He's very friendly but beings have to develop a relationship with him. Even the most wonderful therapy dog couldn't do that in the 15 minutes they have to see him.

Sunday, September 09, 2007

Madeline L'Engle's time has passed and I regret I never wrote

With the death of Luciano Pavarotti and Madeline L'Engle two icons of my childhood have died one day apart. Madeline L'Engle was primarily famous for her children's books especially a Wrinkle In Time.

I read her books relatively late in my young reading life. I didn't move to the US until I was nine but I remember Meg well. A Wrinkle In Time was the first book I read about someone who was awkward and angry at a world who didn't accept her but lived in a quirky intellectual family that clearly loved her but didn't always understand her either. Like Meg's family my parents reacted with bafflement that the world didn't appreciate my wit and intellect and in fact teased and derided the very things my parents valued the most about me.

In many English children's books that I read such as The Lion The Witch and the Wardrobe or even Harry Potter the parents are absent and I could not relate at all to Judy's Blume. But Meg's parents were so present and yet so helpless to help Meg with her difficulties in school. If my life was a novel or movie the book would have launched a grand scene of understanding between me and my parents. Instead it began a long journey in which like Meg I slowly realized that my parents were flawed people who would need work and understanding to get to a place where they had some idea of who I was.

In college I and some friends actually drove from Philadelphia to Maine to hear L'Engle talk. The two things I remember were how bright the fall leaves were compared to the more drab colors in Philly. And the revelation that L'Engle was also a staunch Christian and writer of adult books. She talked about how God was everywhere. I went outside in nature and I saw deity that day. And began a different journey.

I have few regrets in life but I think one of them is that I never wrote to her and told her the two ways she impacted my life. I don't think much would have come of it but I do believe now in telling people my important truths. I always meant to but I thought I had more time. In college I had classified her as "old" but I didn't realize she was in fact truly old and that she might die if I waited twenty years.

I have not launched a grand campaign to write to my childhood icons but I am more aware now that they could pass away. I'm still working on the more immediate problem of arranging my son's special education but if my blogging causes a small ripple in the universe than I do ask the universe to please let them live just a little longer at least until October when I can think about writing to people about matters other than my immediate family.

Thursday, September 06, 2007

Dorma Pavarotti

Luciano Pavarotti's magnificient voice sleeps forever today. Pavarotti's most famous signature song "Nessun Dorma"(Let no one sleep) was from my favorite opera Turandot. I am sad I will never hear him sing live ever again.

Wednesday, September 05, 2007

Kindergarten is great but I want to go back to being a baby and grow up again

Special K is not just attending Kindergarten now but a real person to her teacher among her class of 20. No mean feat in a little under a week but I was not the one who named her Special K. She is the proud recipient of two gold stars and a "Your daughter can read." Why yes she can.

Little T goes everyday and sits and reads with her so in his mind he's going to Kindergarten too.

For the first week she sat and read at the YMCA afterschool program. I was a little concerned she might simply choose to read the entire time. A sign I think of how I had lost my moorings that I worried my daughter had lost her essentially social nature. I think she just choose to adjust to "Spanish Kindergarten" (PC name Dual Immersion) first and then when she was settled in her class then deal with the Y. That is so like her. The other day she put away her book and plunged into all the Y games and activities.

Already at five my daughter sees growing up is a mixed bag. That she has said goodbye to her beloved preschool and she can never go back. She tells me "I want to go back to being a baby and then back to preschool and then again to Kindergarten and round again." I did not really learn this lesson until Special K was half done being a baby and I realised the time had gone by so quickly and in my rush to get out of the sheer drudgery of her day-to-day care I had not appreciated enough her basic good health and just babyness. I did appreciate her as a person and I did relax during breastfeeding.

Oh baby if you only knew if how much I wish I could go back to the good times of your babyhood. Instead I try to appreciate you now. I watched you running so fast in the playground yesterday laughing and hair flying. I hope all your days are as carefree.

Friday, August 31, 2007

No need to hurry

A few weekends ago I went to a Pool Party with 20 dogs that had graduated from the Canine Companions for Independence (CCI) program or were CCI breeders. They ran around and swam but otherwise there was little incident. Apparently this is highly unusual.

I started looking at photos of CCI dogs again. I do this both as a way to distract myself and also because I'm aware of the countdown until the next Team Training in November. I try to remember the power of taking my time. I realize that for a long time my cat Mori had this role for me in my life. He would sit in my lap and purr and I would sit there and pet him -- slow down. Then my children wanted to be held a lot which I alternately liked and found literally hurtful to my wrists. Little T wants to be held a lot but never for long. Special K sometimes wants a brief hug and has her nightly cuddle but it's also short. I no longer have the 1/2 half "enforced" sit-down of breastfeeding or just holding a nonambulatory child. I think I need it.

Yesterday I sat down in the park with the kids. For the first time since Little T started going to the park I wasn't really in super vigilance mode most of the time. I relaxed because suddenly Little T can play in the 2-5 year old area of the park by himself.

I also note with some irony that the command to tell CCI dogs to relieve themselves is "Hurry" Clearly hurrying is not something a CCI person is expected to do otherwise.

Thursday, August 23, 2007

Little T performs wonders again

I took Little T to his language evaluation and the SLP there pronounced him typical. He still has his problems but apparently he will just get over them with a little help from me and preschool.

I had been coming to the same conclusion myself beginning right after I scheduled this eval. Little T suddenly decided to catch up a whole bunch on language especially in the last month after months of literally halting progress. I decided to keep the eval in case the problems turned out to be therapy worthy since my comparison point is Special K who started talking very early and very often. However my children ever delight in making me look silly.

I still remember my pediatrician asking me at one of Special K's first appointments. "Can she point?" "No" I replied since up until that time she never had. "Where's Elmo?" the ped asked and lo and behold Special K pointed to Elmo like she had been pointing her entire life. My jaw dropped. The pediatrician smiled and checked "Can Point" on her chart.

It's still sinking in to be honest. Right now he's quiet because he's watching tv. Yeah bad mom. TV clearly retards speech. But his speech/language is like his fine motor in his right arm. For a long time he had a depressing litany of delayed delayed in his tests "he needs therapy now(Mom run around and get him some)" and then suddenly he was typical typical typical "Don't worry mom". If his fine motor of his right arm is anything to go by he'll be singing complete songs soon enough. He loves songs and I have to say he can already carry a tune better than his sister. With the right help the healing and resilience of children is truly miraculous.

Monday, August 20, 2007

Fridges and writing

I went so far as to call Samsung and talked to second tier support aka technical support. After several minutes of back and forth the guy told me with some surprise like "The models today have curved handles." Oh!! I look at Lowes and there is the fridge perhaps of my dreams in all its shiny beauty.

I also realized I've gotten into the bad habit again of telling myself I'm not a writer because I don't write. I do write every single darn day. Most of it is stuff directly for Little T. Letters and plans. Some of it is blogging. Today's writing besides blogging was to write a letter for myself telling Paratransit why it's unrealistic to expect a person with a movement disorder to put in car seats. Then maybe I can actually go places with the kids by myself that is not walking distance of my house. What a concept. At some point I will get through the mound of paperwork needed to get the help Little T and I need to just live our lives. But instead I spent my time on the phone about shiny fridges so someday I can open my fridge door without pain.

Sunday, August 19, 2007

Little T pulling a wagon

Little T has one strong right arm/hand

Has Harry Potter lost its appeal or I have gotten too serious?

Special K has a high tolerance for fantasy violence and death. She used to play World of Warcraft and now she plays Guild Wars with her dad because the online community aspect is limited only to certain areas. She has a low tolerance for real violence and death. She draws a sharp distinction between the two. Whoever said that kids don't understand the difference has not met my child. Classic fairytales are also full of violence and death. Some children are frightened by them and others are not.

I guess how far we'll let her read will depend on how "real" she thinks Harry Potter and his crew are. I'll ask her after the first book. So far she says she "doesn't get" Harry Potter so I guess Harry Potter is still a little above her.

Meanwhile I found it hard to get into reading the seventh book. I skipped to the end and read the last few pages. Very bad I know. For a few days it sat there in all its largeness. I know Harry Potter has big problems but I feel like I have several Voldemorts to deal with and I'm on quest to destroy them before they destroy my son's chance at a good life. Okay overly dramatic but isn't that what the series is all about?

Now I've started reading it and I find it interesting but it doesn't have the same 'must it read' it feel the I had for the other books. Has Harry Potter lost its appeal or am I have gotten too serious? Or is this book just a bit too grim? What appeals to you about Harry Potter? Do you think the last book was as good as the rest? Which is your favorite Harry Potter book? Why do you read seven books of such huge length?

Crossposted to Silicon Valley Moms Blog on 8/17

Saturday, August 18, 2007

More shiny - in fridge form

What our current  fridge  handles look likeWe need a new fridge. Our current one hurts my wrists each and every time I open it because it is broken and because the shape of the handles causes my hands to cramp painfully as I grip them. Our current fridge is white not stainless steel. However it's easier to see the handles in this color

A repair person fixed it so it's less broken but still painful and says the handles can't be replaced. It's been this way since we moved in almost six years ago but a new fridge that would actually work for me has 4 doors which is more than I want to pay a fridge. Yes I'm cheap frugal.

Shiny fridgeHere's the shiny fridge I want to buy. C is currently testing to see if its slightly larger depth will interfere with kitchen traffic. He's pulled our current fridge out by 3 inches. So far I've noticed no difference. C notices slightly but then he moved the fridge.

4 doors good. AFAIK this is the only fridge with 4 doors. There are french door fridges but these have doors on the bottom that I find hard to pull out. The handles are still not quite what I would like as I'd prefer more curved handles but I think the greatly decreased weight of the four doors (plus actually having a fridge that's properly weighted) will
help a lot.

I'd really prefer more curved handles like these. They seem easier to grip. But that's not an option with the quattro fridge. More curved handles

Sunday, August 12, 2007

Borrowed happiness with money

Rob Brezsny wrote once "Money can't buy you happiness but it can let you borrow it for a while while you figure out to get it for free."

Yesterday we bought me a shiny new laptop. See how it shines. Sturdy magnesium chassis a label stuck next to the touchpad reads. No shiny. Sturdy too.

I used to use my husband C's laptop but its power supply keeps dying and usually it's dead just when I have an hour to write. I must confess that 80% of my writing has been writing stuff for Little T and I mean letters to bureaucrats and doctors on his behalf. The other 20% is blogging. The only way I seem able to write these days is to leave the house entirely away from the numerous Little T letters that keep wanting to be written.

Once away other things ask to be written but I have no laptop. I need to rewrite my picture book. And I have a novel but I have not actually worked on enough to know what is yet. Just who the characters are.

My nonfiction book sits there waiting impatiently to be finished but I tell it that I just can't. We're back in hospital hell. And the book revisits hospital hell in graphic detail. "More fuel for me" the book says in the candid tone it is written. "I think I have enough material and I need a bit more distance." But it will get finished. I just need. Well I'd like to just get the hell out of the hospital.

Tomorrow we will literally spend all day in the hospital with our son who has been deliberately kept awake. Tests will be run. It will probably be hellish. The only bright spot in this otherwise dismal day will be the arrival of our WII. Oh and we bought WII play yesterday and we'll buy another WII game. Ye gods I had no idea these video games systems were so expensive.

Little T turns three next month. For the first time ever we have bought one of those party packages at a party place. Money buys me time and the party we had at the place for bigger kids made Little T happy. It's also a celebration that Little T can actually go to such places.

I also bought a package for Special K for April. She wanted one this year but by the time Little T was clear to attend such places the place was fully booked.

We also test drove a Honda Odyssey and Toyota Sienna. So clear who wins. It's our bid to trade money for the ability for me to drive again. We'll see if it works.

So I'm doing my part to keep the US economy afloat.

And I hope it lets me borrow some happiness for a while. But I would trade it all for better health for Little T. Unfortunately that I can't seem to buy.

Tuesday, July 31, 2007

Who appointed you to define what I need?

As you may know I'm on the waiting list for a service dog from Canine Companions for Independence. I thought I was just getting a service dog but I've discovered I've actually joined an entire pack of warm funny terribly earnest and responsible community of CCI people not unlike the dogs themselves I suppose. Anyway blogging and LJ intersects with this community and one of the CCI pack who has a hearing dog included in her LJ this link: Seek Geo asks: "Do deafies need hearing dogs?"

Never being afraid to share my opinion with those who want to read it. I share it here. I do not share it with Seek Geo since I don't think he was asking me but other deafies. I have minor auditory processing issues due to a scar in one ear drum but I think that still makes me a hearie since I can hear well enough not to need a hearing dog or any other hearing assistance device.

I am amused and puzzled and pained by the inherent contradictions in the Seek Geo movie/discussion.

First of all it was kind of Seek Geo to include captions or I wouldn't have been able to understand the movie at all. So on some level Seek Geo acknowledges there's a wide world out there that doesn't use his primary language.

Then I was really really mystified after Karen wrote how her hearing dog saved her life by alerting her to a forklift that was backing up into her and she couldn't hear (obviously) and couldn't see because her back was turned to it. Seek Geo wrote in response something like "Well it was just the one time." To me that speaks of a deep level of denial.

Seek Geo also pains me. I guess in some ways I used to take Seek Geo's attitude that I'm no different than anyone else. My wrists are trashed as a result of it and I have more needs now.

I am all for "I can do everything that an able-bodied person can... just in a different way." I can definitely understand dislike of the term disabled. I used to kinda hate it but now I've come to terms with "special needs". I have special needs whether it be a dog or drugs or more rest or equipment or whatever. That's just not going to change. Even if my jerking stops and my balance improves and my wrists get better. It will be due to my special needs being fulfilled.

I feel alienated from Seek Geo and not because he's deaf but because I feel he comes from the attitude of my parents' generation. "Don't talk about how your needs are different or special even if it means that if your needs aren't accommodated you can't fully participate in society or you may even endanger yourself. Disabled people are in wheelchairs or blind or mentally retarded. Otherwise you are not disabled. Almost getting killed by a forklift because you missed something. Well it's not because you have needs that weren't met. It's because you should have been more careful. You don't need a dog to alert you. You don't need anything except what I say you need. So stop whining like a baby and just take your lumps."

Friday, July 27, 2007

Very very busy. Long time no write.

I went to a special WWI party hosted by Nintendo and a local mommy blogger called CityMama. Nintendo gave me a special number to call and get a WII. So I bought one. More later.

Monday, July 02, 2007

Still life then onward into battle

My world was quiet and silent without the kids while they and my husband went camping this weekend. I relaxed a lot and watched a lot of tv. The first thing my husband said when he saw me was "You look refreshed." But oh I missed them so! Their loud calls of "Mama mama!" and their constant need to touch.

And today I plunged back into the stress of dealing with insurance. My husband's company changed insurance yet again. And of course the first time it was all wrong. And of course the wrong code was not for me or for my husband who aren't the ones with tons of authorizations but for the children. Of course my son is the one that has the authorizations.

After several hours I think it may have been sorted out so I can fight the battle of actually getting speech therapy for my son. But the day is not over yet so we shall see.

The night my world was poisoned

In the quiet while my kids and husband went camping I wrote the night my world was poisoned on Silicon Valley Moms Blog.

Saturday, June 30, 2007

Special needs playgroup

Finally last Sunday we made it to the playgroup for the parents and kids of special needs who are on this local email list.

We all had a wonderful time. Another kid with CP who was aged five came over to me. Instant recognition. When Little T was busy elsewhere he wanted me to play with him. I had a loads of fun with him. I knew how to encourage him. When to offer a hand. That a hand on the back is reassuring while allowing him to do it himself. We ran the same sort of trotting run that Little T does. We laughed.

Little T also played on the 4 seat teeter toter which is the best PT and OT device EVER. Two hands required and lots of bouncing.

Friday, June 29, 2007

More riding

Yesterday I trotted almost the entire time. Something I would not have thought possible a few weeks ago. I now have riding pants which helps a lot.

Louie Louie my horse would hang his head down sometimes both to get a bit of rest and to test how tired I was getting. If I shifted my weight forward because I couldn't handle the way his weight shifted then he stopped but most of the time I just kept on going. Louie also likes slowing down at the gate and so I had to remind him that no we weren't stopping there.

I'm working on sitting up which I don't do a lot of the time and putting my shoulders back. It made my shoulders quite sore. My legs are long most of the time and my back is supple and so are my hands.

I find each time I ride now different muscles get sore. My instructor says it's because I'm learning.

I find also we're shifting into a new balance where I have more confidence so I'm leading Louie around. I am better about shifting my balance when we turn so he doesn't slow down when we turn. He can anticipate that I am asking him to turn as I'm turning him more by shifting my weight than pulling his reins.

Tuesday, June 26, 2007

My working partnership with my horse

I'm in a therapeutic riding class with two other women with special needs (and a third who hasn't been showing up lately so I have a lot less to say about her.) These two women ride these other two horses and they work wonderfully together. These horses wouldn't work for me. These women are paraplegic so they need horses that are very steady and slow. They literally need to be hoisted onto the horse with three other people in order to mount. The horse needs to be lined up exactly so sometimes the horse has to go through the mounting blocks several times. The horse I ride tolerates this but he's not great at waiting without a rider on his back. With a rider he'll wait until the cows come home but until he gets a rider he's a bit impatient waiting for someone to please ride him. He need to be walked around and around and around. Other horses don't mind just standing there waiting. In fact they seem to rather enjoy it.

I can mount a horse pretty quickly. I need a horse that can trot and later canter. I also need a horse that is responsive but yet also gives me feedback on how I'm doing. I have a movement disorder so I sometimes jerk so I need a horse that doesn't mind that. Another horse is responsive but also twitches every time I jerk. It makes me nervous so that horse is not a good match.

The horse I'm riding now is a great match for me. After a few times he got to understand what my jerks were and ignored them. As he ignored them I relaxed more and jerked less. I tend to grip too tightly and this horse slows down in response. Other horses pull back with their heads. This is what horses "should do" as pulling too hard does hurt them. And it's a great response for someone else but for me it just leads to a negative feedback loop where I pull tighter. When I loosened my grip and moved my reins with the horse the horse went faster. It taught me fairly quickly to have softer hands and bend my elbows. My instructor had been telling me for months and I'd been steadily improving but there's nothing like direct feedback.

I'm sitting on a blanket so the horse is in close contact with me. He's sensitive to how tired I'm getting or how nervous I feel and will slow down if he feels those things. The horse is "not supposed" to do this. He's "supposed" to stop or slow down when I say so but it worked really well for me when I was learning to trot. I tend to push myself too much. He started out trotting slower which was less comfortable for him but he trots faster now as I can handle it better. This gives me a great sense of security and trust in the horse. I feel more confident. And I've learned a lot faster.

For these two other women this horse wouldn't be a great match as they have little feeling in their lower body and so can not respond to the horse in that area. This horse also tends to trip sometimes quite badly when he's not paying attention. It's never been more than a minor annoyance to me as I can feel when he's about to trip and compensate but for these women they could fall off. And in fact the tripping also lets me know that I need to engage him more and make him use his shoulders which is another weakness I have.

In the first class where I could trot for longer distances I encounted this problem with this other horse that this woman doesn't usually ride. This mare doesn't like my horse a gelding who apparently herds mares in his free time. If my horse got too close then her horse would stop. Did this woman or anyone yell at me and tell me I needed to control my horse better? Or did someone tell this woman who can't kick the horse that she should never allow her horse to stop. Of course not. Someone simply gently pointed out the problem to me. It took me a few tries to get the distance right and learn how to control my horse at a faster speed but we worked it out.

My instructor told me this horse used to ride with a girl who had brain cancer and he took care of her in much the same way. Even though fortunately I don't have brain cancer we're similar enough in the way we ride that he understands what I need.

This horse has strengths and weakness and so do I. This horse is a great match for me and a wonderful horse in the program. But I would not recommend this horse to everyone. For another person with different needs this horse would be absolutely terrible. For me he's absolutely wonderful. He has taught me so much in the few weeks I've ridden him than I've learned from riding other horses in the past 9 months. I really love this horse. He was in a demonstration show with another rider and I felt so extremely proud of him.

I hope this horse and I will be riding together for a while. But if I ride another horse I will have to learn to ride him or her and she or he will have to learn to be my rider. Some horses will be a great match and some won't.

Wednesday, June 13, 2007

Lead paint hazard for Thomas and Friends wooden railway toys

The CPSC web site lists all the trains included in the recall.

I'm outraged that toys so heavily marketed and EXPENSIVE contain lead paint.

Saturday, June 09, 2007

Special K's first loose tooth

Special K has a loose tooth. I'm afraid that C and my initial reaction was "Isn't she too young to have a loose tooth?" A little anxiety as I google "age lose teeth"

The first entry was alarming about a 5 year old losing her teeth and the answer was "Something's wrong with her teeth. Check with a dentist."

Second entry was more soothing and said kids lose their first tooth about 5-6. Special K turned 5 in April. And it's from Parents magazine which would seem a more reliable source.

So no need to panic.

But I still think she's too young.

For her first couple years I was in such a hurry for her to grow up. Now I'm constantly thinking "Slow down! It's too fast!" But of course she grows at her own pace.

Thursday, June 07, 2007

First swimming lesson

Today Little T had his first swimming lesson along with Special K. He wanted me with him in the water. I forgot my bathing suit. So I just stepped in with my clothes. He kicked a lot and had a wonderful time. Special K had initial trouble with the kick board but the lessons from last summer seem to be coming back.

The pool was a warm 90 degrees. Outside was alternately warm and freezing when the wind blew.

I climbed out soggy and wet and a couple people stared. There wasn't really anything to stare at since I fortunately wore clothes that were not see-through when wet. Wet clothes are not a big deal since I was going right home. Slightly cold though.

Somehow this seems a strange metaphor for my life. I am never quite prepared and yet I plunge in anyway.

Reading is scary and unregulated

When my daughter turned four she asked begged me to learn to read. I'm a big reader myself. I had this inkling that maybe it was kinda young but she was really eager. We started off kinda haltingly as I tried phonics without success. Then we figured out she was more of a sight reader. By the time she turned five she could pick up a picture book and read it.

She also wanted to learn to write so I got her some writing workbooks. Through writing she's learning phonics. I found the workbooks vary a lot in quality. Some have directions that *I* found hard to understand. I recommend Spectrum which you can buy at Amazon or Borders.

Now she's a reader. She reads to herself all the time. She goes to the library and checks out tons of books. She really prefers books "with a picture on every page" aka picture books. As I've discovered the reading level on picture books varies a great deal and she can read all of them.

I've also discovered that I can no longer read my email in front of my daughter. No I don't get porn or anything but the odd Cialis ad makes it through my spam filter. Once my daughter walked up to the screen at just the right moment as I was deleting spam. She asked "Mommy why are you getting email about pills?" Long pause while I try to think of a truthful answer that doesn't get into much detail. "Well honey it's a commercial (we've talked about commercials before) They think I might want those pills but I really don't need them." "Oh" she said and walked away. Now I don't read email in front of her unless I know who it's from and what it's about.

The other day I talked to a librarian about my daughter's sticking to picture books. I wondered if it was okay. She said "Sure. Picture books go all the way from preschool to sixth grade in both reading level and content." I nodded my head. The librarian gave me a really serious look. She said "You need to be careful with these early readers. They can start reading subject matter that they have no idea how to deal with." I nodded my head thinking of Cialis. She looked even more serious. "You need to read the book before you let her read it."

I must have looked confused. I do watch an episode of every show I allow my kids to watch. I vetoed "Jon and Kate plus Eight" because those parents just snipe at each other constantly. They just seem so stressed to have eight kids with no other help. But picture books? I mean they're just picture books. Right?

The librarian walked me over to the picture book section. She gave me this book called The Tin Heart. The cover had a sweet picture of two girls and a tin heart with two pieces. I skimmed the beginning of the book. It started out innocently enough. Two girls in the Civil War. The father of one made a tin heart and gave each of the girls half of the heart. It talked a lot about their impending separation. All sweet and sad. Just at my daughter's level.

Then suddenly with no warning in the middle of the book.....runaway slaves. Now I understand slavery is part of the Civil War and part of our nation's history. And someday I will explain slaves to my daughter. And genocide. And torture. And Vietnam. And Guantanamo. But she's only five. She's still having trouble with the concept of "I won't be your friend anymore."

To say I was shocked is compare slavery to "I won't be your friend anymore." I was calling my husband on the phone as soon as I was home alone and babbling incoherently to him. It's not that I think picture books must cover subject matter appropriate to a five year old. It's that I expected there to be some warning. Some indication that the content is other than for preschoolers.

For example another book called Team Mates had on the cover an African American man in a baseball uniform and a white man in a baseball uniform. On the back it contained words like "segregation" and the "Negro Baseball Leagues". I skimmed that book and it talked about segregation and how there were two leagues and such. Nothing about slavery. As the sister of a special needs brother my daughter already unfortunately knows that sometimes people are mean to other people just because of the way they look or act. I told her she could read that one with a grownup.

Anyway I want to thank that librarian for giving me an education. You can bet that I'll be reading skimming all my daughter's books until I feel she's old enough to deal with any subject matter that might come up.

Even chapter books that feature sweet photos of a fluffy dog are not five-year-old safe. The back merely said it was about a dog from the pound and some sort of mystery. Midway through the book another dog dies. I asked my daughter if she wanted to read a book about a dog that dies. "No" she said firmly. That book went away too.

I'm also a little angry. I ask myself why books for kids aren't rated. I personally find reading and then imagining something to be infinitely more scary than anything I could watch or hear. I think it's because books are undervalued.

Don't get me wrong. I think the rating system for visual and aural media is far from perfect. I still have to watch/hear it before I'll give it to my daughter. However right there on the cover I have a good idea of what I might be getting into. I don't have to go halfway through before I realize "not appropriate".

Crossposted to Silicon Valley Moms Blog

Tuesday, May 29, 2007

My daughter's stardom leaves me frazzled while American Idol makes me feel maternal

Blake_and_jordan A few weeks ago my daughter was proclaimed a star... at her preschool.  The whole thing filled me with anxiety. It combines all the mom things I totally suck at --producing crafts and baked goods.  Last year I at least got to do something I'm good at -- read a story.  But this year my daughter took over that role and read a book to the class.  Yes I'm really proud of her that she can read.  But let's talk about ME!

First and biggest anxiety was to produce a poster of my daughter's life.   I thought the first part will be easy.  I'm tech savvy like many Silimom and so I figure I can upload photos to Costco and get them printed.  I learned the hard way that printing photos yourself sucks up oodles of my time and produces worse photos.

But the Costco website wouldn't take my password and wouldn't email me my password. I felt doomed.  I can't even succeed at the one part I thought I could cover.  I panic and start to write this post.  As I'm writing FINALLY the password arrives.  I felt like a total idiot because my password is completely stupid.  I change my password to something less stupid.  Since I've just publicly announced I have an account at Costco.

The poster turned out to be pretty good.  It helps that my daughter can cut things herself now.  I actually can't cut properly.  Ironically using scissors to cut out shapes is one of the tests for Kindergarten Readiness.  Good thing neither Bryn Mawr nor Haas asked me for this test. :)

But another star moment for my daughter was when she sang in the Assembly at preschool.  She knew all the words and all the motions and she sang her little heart out.   But again I had the anxiety of trying to capture the moment on camera and not doing so well at that either.

Which brings me back to American Idol.  I already blogged about several reasons why the show appeals to me.  But I had forgotten that one big appeal for me is that I feel proud and maternal in a lesser but similar when "my idols" do well.  Maybe one of the reasons I like Sanjaya so much is that he sorta reminds me of my brother at the same age.  And Melinda just seemed so sweet.  Okay I'm not quite old enough to be Melinda's mother unless I had her as a young teen.  Even so.

During those weeks I got to be a proud stage mama with no real consequences and very little of the anxiety.  Yes I'm sad that neither Melinda nor Blake won.  But all I had to do was call a few times on the phone.  I did call for an hour and a half with Blake for the finale.  I knew it was a losing battle.  Jordin just outsang him that night.  But I did what I thought was right.  I'm sure they'll all do fine. 

I suspect I will buy Blake's album to hear what he does with his songs but I doubt I'll go to any top ten Idol's concert.  It would sorta ruin the illusion for me that they're my kids.  Yes I'm the Paula Abdul sort of watcher.  So sue me.  But please don't break my nose.

Crossposted to Silicon Valley Moms Blog