Tuesday, December 26, 2006

Christmas was great! We stayed home all day and I didn't go farther outside than the front porch. I got a 3 hour nap. Played with my kids. Brenna called me Mommy Princess all day. We had tea parties and Rowan cooked pretend pancakes in their new kitchen. Therin alternated between his video game and his robot dinosaur. I got to play my video game too. Therin & Rowan watched.
"Mommy, I'm your biggest fan!"
"You rock out loud, Mommy!"
"You're prettier than that hot chick in the video game"
My boys rock!
My grandma Mary came and visited and didn't seem uncomfortable while she was here. We chatted for awhile and she showed me some things on the piano. Mom & Dad stopped by for a little while before heading out to the O'Brien Family Christmas gathering. We probably should have gone too but there is so much internal family politicking. They also play that White Elephant Steal the Gift thing and I don't play those reindeer games. With all of the people that show up I'm surprised that Therin doesn't get sensory overload; I know I do. I used to hide under a table and read during the Christmas parties when I was a kid. Now that I'm not under the age of 18 I have to socialize. I don't mind socializing and I do get to have the cool eggnog but I hate when I get cornered by somebody who wants to gripe about how X isn't doing this or Y is doing too much for Z. It was nice to have a quiet Christmas.

I miss my brother and I'd love to spend time with his family, instead I lurk on his wife's blog and read all about it. Thanks Krystal!
Hugs to all of my family and friends who are far away. I hope your Christmas was all you wanted it to be.

Thursday, December 21, 2006


I spoke with Therin's 2nd grade teacher today, Mrs. L. We were finally able to talk about last Friday's IEP. She was pissed off. I found it interesting that we were ticked off about different aspects of the experience. I think hers is the more noble position than mine, but I'll explain later. Thank God that I have her and the Principal on our side. I think there is MORE than enough evidence for Therin to have an aide. It seems that he has made his midyear turnaround and is doing well academically and is getting used to the classroom routines. I hope this doesn't mean that she will no longer back me up (as happened with his other teachers). I think once the teacher learns his methods of communication and he learns theirs they have less need of an aide where academics are concerned and this usually happens around about November/December. By February they don't think he needs an aid but . . .

He is smart and full of potential and would learn so much more if some one was there to translate for him. They wouldn't deny a non-hearing student an aide that uses sign language to help communicate. Why do we have to prove BEYOND a shadow of a doubt that this smart young man needs the assistance of a human aide in navigating the social structure of the classroom and playground. I'd not worry about this and pursue this if I didn't think he needed help. He wants to socialize with his peers. Much of last year and this year you could tell Therin's desk by looking to see that it was the only desk standing alone without a group. Mrs. L has recently put him in a group and he just beams when he tells me about what his group is and what they do together. He wants to be social and feel a part of a group. If HE was fine with being alone I'd be fine with it too. BUT he tells me he doesn't have time to eat his lunch because he needs to play with his friends. I found out that during lunch he is not only sitting alone while he's supposed to be eating but when he is out on the playground he is only "walking the peremeter" of the play structure. Until this IEP I didn't know this. He doesn't consider this walking "playing" with his friends. He spends before school, 1st recess, and lunch walking the peremeter. 2nd recess is when he actually "plays" with his friends: he wanders around until he sees someone he wants to play with and then he gives them such a big hug that he usually knocks both of them to the ground. He hurt another child doing this and because of this incident he won't be allowed to hug other kids at school. They also don't want him hugging ANY TEACHERS! He is such an affectionate child I worry about what this will do to him. What they were trying to teach him before was to ask before hugging other people. He understands when are appropriate and inappropriate times to hug (not in the middle of instruction - after class or during a break is O.K.) but when he gets in trouble is when he works himself up all day, I would imagine, planning what 2nd recess will be like and then when it's time he gets so excited that in his exuberance he bowls over the other child and himself. I think that a better strategy would be to not only teach Therin to interact appropriately the other kids, they should be taught his cues as well so he isn't likely to injure anyone (himself or others). His classroom teacher actually does a wonderful job explaining how everyone is different and have different needs since he gets pulled out of class so often. Most of the others are very compassionate and accepting and those that aren't hopefully aren't the kids that Therin is trying to approach. If there was an adult that could remind him during lunch that he needs to eat so his body has the energy so that he can play during 2nd recess I think that would be all it would take. If an adult could be there to remind him to give a gentle hug IF his playmate says it's O.K. and then direct the pair on how to play together that would help Therin without pushing him beyond his social limits. If another adult was available to redirect him and help keep him focused during the frequent testing that schools seem to espouse that is where my child needs help. He is curious and absorbs so much and is more aware than he sometimes seems to be.

So how am I torn? Mrs. L pointed out to me that this specialist will only be at school once a month and when she is there she's going to be a hard ass and insist on making Therin eat his lunch (I'd like to see her try and force him to eat!) When she is at the school she will force him to do things. He doesn't respond well to that kind of treatment. A firm but gentle touch works the best for him. If someone was able to explain the reasons behind a partcular activity compliance increases 4 fold.* My original thought was - if it works great! If not he'll dig in his heels and throw a tantrum and give them all the evidence they need to give him an aide. ::Don't flame me yet! ::After it was out of my mouth it took me a bit to realize how callous this attitude is. So - I'm willing to subject my child to this crap to get him the actual assistance he needs. Am I crazy? Mrs. L wants to stop it before it starts. I feel like I'm such a crappy mom for even considering letting them go through with this. My lame ass attempt to walk the middle ground is to find out when this woman is supposed to come and either observe her with Therin or be there to pick up the pieces when she fucks his day up. If this isn't a hoop we must to jump through to get the free and appropriate education that my son is entitled to I wouldn't put him through it. If only I had the patience to homeschool. If only I didn't NEED to keep this full time job so that my family has insurance benefits and food on the table. If only. . . If only. . . But I'm human and I make mistakes. I just hope that I don't screw up my sweet boy.

Good stuff break! Therin is talking so much more about school. Adapative P.E. is great! He loves it. I'd have loved P.E. too if I could pick a friend from class and go to the auditorium to do DDR (Dance Dance Revolution a video game). He will be able to use the sports skills and dance skills later when he wants to interact with friends. He is smiling a lot more and not counting the days (out loud anyway) until Winter Break. At least some thing good came out of the IEP. And I'm learning more about my dark side, the side of me that makes me sick and want to look for something to put my family out of their psychomom induced misery. Oops, that was an awfully short good stuff break. No, I won't do anything stupid but it's hard to stop thoughts like that from popping up. More good stuff quick! Rainbows, puppies, icecream, BG's in the 100's, my sexy hubby, popcorn, slugs! You know, I have had a lot of slug stories in my life? I didn't realize until I posted the pic earlier this month. Now my brother has posted a story about slugs on his website and my friend Jenny was telling me about another slug story from high school . . . wierd. Now I'm really getting off topic. Check out Xenophod's link if you want his side of the slug story.

*(My friend Sam is THE best person to combine all of these elements, gentle, firm, with just the right amount of explanation. She RARELY has problems with Therin. Am I sucking up? No, because it's true. She'd make a great aide. Now I'm sucking up but it's still true.)

Friday, December 15, 2006

Insert Primal Scream Here- Prepare for incoherent rant

AHAHHHHhhhhhhhhh!!!!! Really does not cover my frustration today. I spent 2 hours in an IEP getting the reports from several people: autism specialist, OT (occupational therapist), PE Teacher, and some other behavioralist(?). Anyhow. I thought that from these reports would come something concrete about getting Therin an aide for at least part of the day. We all agreed that the teacher is overwhelmed by his behavior I don't see how changing his behavior plan and bringing in YET ANOTHER PERSON is going to help. Isn't it more expensive to be using all these people? Wouldn't it be more cost effective for him to have a shadow, aide, person to whack him upside the head and say YO Quit it that boy doesn't want a hug! He needs all this stuff and I can't be at school to do this for him (and when it comes to PE I rather suck myself. When there are behavior issues and other things going on around here my first instinct is not to teach the boy how to dribble a basketball - that important lesson has slipped through the cracks but no more!). His poor teacher was on the verge of tears. Therin has good weeks and bad weeks and the good ones are pretty good but the bad ones really make her want to tear her hair out. It has been that way for ALL HIS OTHER TEACHERS. I am so not going to give up! No child left behind my ass. He will be left behind if he doesn't have an aide and if he doesn't get an aid sooner rather than later than he will be ostsracized by the kids around him. Although, a blogger I know mentioned that her relative was shunned by many growing up and that it really turned out to be a good thing- he was recently diagnosed as an adult with an ASD. . . BUT I still want to do my part to make sure that he has every advantage I can give him. So I fucked up genetically, I can fix it. Oh, what came out of the IEP is this: Therin will continue to be pulled out of his class 2-3 times for Reading Resource and Social Skills group. He will be pulled out 2 more times for Adaptive PE, and he was going to be pulled out for the OT & autism but we worked it out that the OT will help the autism specialist and that she will come durning a break time to help him interact with other children and work on appropriate playground behaviors and maybe use the appropriate playground behaivors/games to help with his OT issues. For example: He'll be getting help with playing with a ball from PE - at recess he will be shown how to use a ball to interact with other children and when he feels the need for deep pressure stimulation, instead of exuberantly grabbing and hugging another child without permission he will hug the ball instead. Something funny I found out in the IEP is that Therin would prefer to organize his paperwork by lining it up on the floor - poor kid comes by it honestly. Out of sight -out of mind for me too. I try so damn hard to be organized and it really doesn't work very well most of the time. Sigh. I guess the IEP really turned out alright but I was under the impression that this was going to address the need for an aide not drag it out. Too bad education is all about the money instead of all about the kids.

Monday, December 11, 2006

Sunday, December 10, 2006

Hey Deetle!

If you get here and read this post. Tell me how you got flickr on your blog. And how do I make a link xenophod.com? You so rock. Too bad you're so far away.
Yer Seestor,
After reading a few stories and going in a few chat rooms I know my little girl is so very lucky. DX'd on 8/17/06

1. We caught it before it got too bad and even with the misdiagnosis at the beginning she is still here with us.
2. Her Endo trained at a hospital that started infants and toddlers on the pump right away.
3. Some paperwork fairy in Kaiserland ( probably Nurse J. or her Endo ) got the pump approved and the paperwork on it's way to Animas so fast that . . .
4. Brenna's pump arrived in a few days! (I was told to not expect the pump to arrive for a month)
5. Her Animas rep had her hooked up before the end of September - 6 weeks after diagnosis.

Some parents have had to fight for a pump for their child. I can't imagine life without it. We have given her very few shots since she's been hooked up to the pump but I am positive that I will remember how to use needles correctly for a very, very long time. If, for some reason I forget, look out oranges!

I still feel like I'm fine tuning things with her pump and she gets tested somewhere between 6 & 12 times a day but the more I help her do this the more I learn. The more I learn the better info I can give her when she starts to take over.

So far we own "Pumping Insulin" but any help is welcome and I read just about anything.

You probably should read the post before this one first

Brenna update

Brenna is up and running! The trick now is catching
her. If only I had her energy . . .

We went to an appointment on Monday, September 11th.

After dropping off Rowan at preschool we saw Chris on
his way back from the market. After a little chat &
cheese we were on our way (thanks Chris the cheese came in handy)

The Dr Visit was kind of like being in an IEP meeting
except for the fact that all of the professionals
rotated through the uncomfortable examination room
instead of all surrounding me in the principals office
-- oh, it was longer too. We were there from 10:30 to
12:30. I was so glad my Mom was there to take Brenna
on walks when she started to bounce off the walls.
The Dr. who misdiagnosed her to begin with came into
the room at the same time as her new Encocrinologist
so I bit my tongue. He said felt very bad and yet the
only apology he offered was "sometimes things like
that happen". Luckily (unluckily?) my mother was out
of the room (my poor tongue). Both Doctors cut me off
when I tried to ask why he didn't test her blood. I
bet he can't wait to read my evaluation!*

Good things happening from that visit:
-Brenna gets a pump!!!!! Sometime within a month
This will help so much with insulin doses.
-Dietian says she's eating well
-I keep good records
-Nurse says that she seems to be doing well and that I
have good instincts about her insulin doses.

Not so good things(not inherently bad either):
-Endocrinologist says I need to do exactly as she says
because we need to do this scientifically (I guess she
doesn't like my instincts)... so I will, when it won't
hurt my daughter
-Went to do more blood tests -- took a nurse to help
me hold her and one to draw blood
-Blood test came back that she has a hypothyroidism
and I need to give her 1 1/2 pills each morning, 1/2
hour before breakfast, on an empty stomach -- tomorrow
is the first day . . . wish me luck.

Life goes on . . . Rowan is doing great in preschool
and I have an IEP at Standiford for Therin. I'm
thinking of starting a blog -- I love reading Coxford
News. It's great to read something so joyful!
Mundane would be nice too. Keep me in the loop. If
you see any interesting email -- send it on to me.

* Kaiser never did send me an evaluation in the mail about that particular visit. I guess I told the story enough while Brenna was in the hospital that my complaints got to somebody.

An email from the DX files

Some of this isn't new as I have already talked the
ears off of some of you -- be careful ears on the
floor may be a tripping hazard in the back room.
Please pass the information along to anyone who wants
to know.

Brenna has been diagnosed with type 1 (insulin
dependent) diabetes. Her pancreas has for an unknown
reason stopped producing insulin (doctors have lots of
theories but they really don't know for sure what
causes this. They say that "envornmental & genetic
factors" play a role but they are still researching).
She will not grow out of it. Right now our focus is
making it a part of our daily lives. We are working on
a routine and once I figure out the carbs for her
regular meals and snacks I'll be able to make a more
regular menu. There is so much to learn. We're
keeping things matter of fact - not fussing over her
after finger pokes or shots - "ouch, that hurt would
you like to color or play with playdough?"

Brenna is such a trooper she already picks a finger
for the glucose test! She still whimpers and squirms
when I give her insulin. When the nurse at the
hospital gave me a shot (with saline in it) it didn't
hurt much but when I let Brenna pick one of my fingers
and used the lanset it hurt for awhile -- I must be
doing something wrong with the shots. For the moment
we're using a sliding scale for insulin doses based on
pre-food glucose.
She has 3 kinds of insulin and I give her between 3 to
5 shots a day- usually 4 or 5 at the moment but her
diabetes nurse tells me that it will change as she

Thank you for all of your good wishes and support. The
cards were wonderful. I keep them in her diabetes
folder and break them out when ever I need to "hear"
your advice & kind words.

Thank you,

P.S. If any one knows of any good books about this or
carb counting let me know.

Reaching out

I don't know why but I'm having such a hard time reaching out to the people around me for support. There is this wonderful lady who works for the county and forwards flyers and such for all of the diabetes group things happening around here. So far we haven't been able to make it to a single event. Well, we did make it to the Halloween event at the hospital across the street from us. My daughters Animas pump rep was there to introduce us to a few people. But I didn't see Gina there. I'd love to go to a support group, if nothing else so that Brenna can see other kids with diabetes and I can talk with other people who KNOW.

Everyone at work asks me how my little girl is doing but on those really wierd days when my mom calls with bg concerns or sleepless nights testing because she's having nightmares (ok, is she having nighmares because she's being poked 24/7? or is it high/low blood glucose? is it because she's 2?) Then instead of giving them the "everything is fine" I start speaking "diabetes". I didn't even realize that I spoke a foreign language until my librarian coworkers were asking me for definitions. Oops.

I'm not even talking to my friends very much lately. I need to. They are wonderful people and I miss them so much. They let me talk in diabetes even if they don't understand completely they don't try and fix things they just listen. I sure hope I get to repay them sometime. I really found out who my friends were when Brenna was in the hospital. I had so many messages on my cell phone (I think they have "expired" they weren't in my voice mail last I checked) with messages of hope and support. I listened to them a lot when we were in Santa Clara and even when we got home. But it's hard. I don't want to keep dumping on them so I've withdrawn. Not on purpose. I'm just so tired and I don't feel like I have much energy for anything other than work & pancreas duty. I don't feel like I'm doing that great during diabetes duty. Her numbers are good, until I take over. Or that's what it seems like anyway.

I need somebody to gripe to about this disease. I think blogging & reading other blogs is helping a little bit. It's nice to know somebody else is out there.

Wednesday, December 06, 2006

What are you doing!?!

You can't really see what Rowan is doing. I walked into Brenna's room to see him throwing and whacking at a hummingbird wind chime that hangs from the ceiling fan. When I asked him what he was doing he responded;
"Mommy, I'm making beautiful rain shines"

Tuesday, December 05, 2006

Kids kids the slugs are back!

My family's favorite comic when I was a child was "The Far Side". Don't ask me why but my brother & I just got a kick out of this one where a family was outside and slugs were all over the place. The caption was "Kids, kids, the slugs are back!" We'd bust up laughing when we'd see a slug and repeat that line. I'll make a link to it if I can find the comic. This evening Brenna went into the play room and on the floor was a huge slug. I couldn't resist! Especially after she got down on the floor and started to pat it like it was a pet. Don't worry she helped Daddy find a spot in the garden for it.

Monday, December 04, 2006

Look, a bug!

Camping is so much fun when you can find real live bugs that don't know enough to run away. Rowan was having a blast running around until he saw a spider 2 inches from his face! He screamed and clung to me for a little while but as you can see he got over it quick when he saw this bug.

We went camping fairly close to home. It was only a 45 minute drive from home and very close to emergency services if we had need of them. We didn't know how close we were to needing them. The marshmallows were delicious, but I wish we knew we should have been giving her a bolus at the time. I really, really wanted to believe the doctor when he said Brenna didn't have diabetes. This camping trip was the same evening that we took her to the doctor to try and find out why she was peeing so much. I changed her diaper 3 times that night.


This is one of my favorite pictures of my boys. They are sitting on the StoryTime rug at the Keyes Library. They visited me when I was working there as Branch Manager.

Sunday, December 03, 2006

Crafty. . .

'Tis the season to be crafty. Fa la la la and all that rot. I want to get together with friends to do crafts and stuff but it never seems to work out. That sucks. I'm planning a Sangria Craft Fest '06 and hoping this will entice my wayward friends. I've never had sangria so I'll get something like margaritas as a backup. So, if you're a friend reading this give me a time and date and I'll provide the designated driver.

Hopefully, I'll be getting together with some friends from work next week for crafts & stuff - sans alcohol. That should be fun! My husband says I need to get out of the house more. At home, I'm either a translator or a pancreas (well, at least it feels that way) and it was nice to get out and spend some time at Borders Books with the New Mommies from work.

Hope your season is crafty!

Who are the drugs for?

At a recent IEP (individual education plan) meeting at my son's school the school Psychologist suggested putting my son on drugs to help with his condition. This is the same woman who has never observed any abnormal behavior from my son while visiting his classroom. She is one of the main people against giving him an aide to help him in class. The reason? Having an aide would be a "restrictive enviornment" and they must let him learn in the "least restrictive enviornment". Wouldn't putting him on drugs be more invasive than having a person beside him telling him that he need not pull his pants down to his knees to scratch his butt? Drugs won't change the fact that he DOESN'T GET IT. Social mistakes that other children need to do only once he will repeat until the connection in his brain is made. And that will only happen in the heat of the moment when the teacher is busy with 19 other students. I can't be there to figure out what is going on and it doesn't help for me to "talk with him" about the situation 4 hours after the fact. So I ask the question: Who are the drugs for? My son? Or the school so they don't have to spend money helping my child? Arrrgh.