Monday, January 29, 2007

Forwarned is not always Forarmed

Dr. M. did the I.Q. test and initial assessment of Therin to see if he would qualify for VMRC to do an official PhD Psychiatrist assessment/diagnosis when he was in Kindergarten. He spent about 1.5 hours with Therin and when he was done Dr. M told me that if the Psychiatrist saw Therin on a good day his autism might go undiagnosed. So 4 months later durning the 2 hour drive to San Jose for the appointment to get an official diagnosis I was trying to analyze all of the triggers that Therin might encounter. We did what we would normally do for any drive with Therin. We made him comfortable, brought toys, games, snacks, and music to keep him occupied. He had both parents on the trip so that if Therin needed a break and we had to take a walk one of us could be talking to Dr. J. We didn't do anything to "aggrivate" or push his buttons so that his autism would be obvious. I wanted a diagnosis but what I wanted more than anything was somebody else to see what I saw. I wanted Dr. M to be wrong. I figured that Therin would get a diagnosis of PDD-NOS or Aspergers and then he'd get help at school. Yet, when we got there Therin was in his element. Three adults paying attention to him. He was extremely compliant and time constraints didn't bug him at all. Therin was on his best behavior and I hadn't seen him act so well, ever! I figured we were going home without a diagnosis and I'd have to find a way to pay for a second opinion. To my surprise Dr. J gave him the diagnosis "High Functioning Autism" He meets 10 of the 12 criteria for an autism diagnosis. Many of the difficulties on the list are very mild. A few are moderate and 1 or 2 cause him great difficulty. Most times he does well handling his minor sensory issues but if it's a bad day you can tell because noise or shoe problems will be triggers for tantrums.

I was warned at the beginning by Dr. M that an Autism Specialist may miss Therin's autism diffuclties why is does it continue to surprise me EVERY IEP that the people observing Therin miss his problems when they don't have a background in autism. The school psycholigist likes to point out to me "that we ALL observed him and we ALL came to the same conclusion. How could ALL of us be wrong." "If he's on task 85% of the time what do you really thing an aide would do to help him?" He's "on task" for the 1/2 hour that they are observing him and when they leave he melts down or becomes defiant. Doesn't that say something? They probably think that Mrs. L is lying. Who knows. Just because his difficulties aren't always apparant doesn't mean that they are addressing the issues he needs help with. Just because (compared to other children on the autism spectrum) his issues are less intense doesn't mean his teacher doesn't need an extra person to help her when his issues do become more intense. There are 2 other children on the autism spectrum in Therin's class. I would be happy with a whole class aide but there isn't a classification in our school district for this kind of thing.

If you haven't figured it out already this IEP was pretty much just to tell me that Therin isn't severe enough to qualify for an individual aide. It only took 2 weeks of observation for them to come to this conclusion. Whatever. I told them what I thought and I wrote on the IEP that I still feel strongly that Therin needs an aide. There is someone who will spend more time in the classroom with him to help get his behavior plan together. We will see how this works. I'm tired. I don't want to fight them anymore. So for right now I'll wait and see and save my energy for future fights.

IEP Today

I caught some kind of icky cold that's been going around and have been out of it since last Monday. Monday and Tuesday I took some sick time and slept but I still felt awful when I went back on Wednesday. I used up most of my sick time when Brenna was diagnosed so I didn't have the hours and I had to get the preparations finished for two work thingies that were going on Saturday. I carried Clorox wipes with me everywhere and wiped down phones, knobs, and computer keyboards after touching them.

I was so stressed out about work last week and so fuzzy that I forgot to go over the IEP stuff. I keep a red (Therin's favorite color) binder with everything related to IEP from the first note I got from the Preschool to pamphlets and articles on autism. I can't even remember why we're having an IEP. Therin's teacher called on Thursday evening but by the time I got home I figured it was too late to call her -- and now I'm remember it's 5 a.m. of IEP day and waaaay to early to call. Oh well, I have time to stop & chat with her when I drop Therin off.

Wish me luck! I'll be perusing the red binder until it's time to wake up the kids . . .

Monday, January 22, 2007

Doing the Shuffle. . .

Nearest Distant Shore posted this meme & I thought it would be fun to participate.
It was a lot of fun. I discovered songs I didn't know I had. I've made a playlist with all of these songs so that I can listen to them & make comments about the songs I haven't commented on.

The Rules:

Put your music player on shuffle.
Press forward for each question.
Use the song title as the answer to the question.

Here are the questions & my songs. . .

What does next year have in store for me?
Cheese - Group X (huh? Have to listen to this -- taken on face value I hope this year has a lot of laughs & cheezy grins?)

What's my love life like?
I'm A Loser Baby so Why Don't You Kill Me - Weezer

What do I say when life gets hard?
If Had a Million Dollars - Barenaked Ladies

What do I think of on waking up?
All the Waiting - Frou Frou

What song will I dance to at my wedding?
Old Apartment - Barenaked ladies (Kinda close Old Time Rock and Roll was one song and we did the Time Warp with our friends)

What do I want as a career?
What do you do with a B.A. in English - Avenue Q (This was PERFECT!!!!! When I was close to getting my BA in English I asked this question many times. The answer: Work at the Library!)

Favorite saying?
Aikendrum - Raffi (Not my favorite Raffi song but it is silly and fun)

Favorite place?
Marijuana in your brain - System of a Down (huh?)

What do I think of my parents?
Mother Earth - Without Temptation (obviously mom so I'll do two here)
Drive My Car - Laurie Berkner (Another Children's Music Artist. A sailing song would be better here but . . . not too bad for random)

What's my pornstar name?
When You're Magic - Anne Hill (Not sure how to translate this one. . . since it's from a children's album)

Where would I go on a first date?
Buddy Holly - Weezer

Drug of choice?
Our World - Maire Brennan (hey this should be swapped with that Marijuana one)

Describe myself
Botony Bay - Denis Gibbons (traditional Austrailian folk tune - it's about getting shipped off to Aussieland as a prisoner. Guess I'm feeling a little trapped right now.)

What is the thing I like doing most?
It's Tricky - Run DMC and the Beasty Boys (?okeydokey. . .)

What is my state of mind like at the moment?
How do you do - Shakira

How will I die?
Feel It Again - Honeymoon Suite

Saturday, January 20, 2007


Originally uploaded by amberthyme.
Here's Rowan. He has fun at preschool. My sweet boy. I love to watch him play with his friends. I am so lucky that his preschool is across the street. Miss S., his preschool's director, told me how well he is doing (even though he got into trouble that day). She told me that when we're ready that Brenna will be welcomed. This blog is about Rowan so we'll talk about Brenna & preschool another day.

He's at home playing a video game with Therin. I made him pause the game so that I could get this picture. He is such a snuggle bunny. This is a nice smile -- he usually hams it up for the camera. His favorite color is blue (most of the time). He loves his brother so much that he tackles him. Often. Hard. Yet, he gets so irritated when Brenna does the same to him. That makes me laugh. Hey buddy, you're teaching Brenna how to do this. He is the spittin' image of my baby brother. Put a picture of Rowan next to a 4 year old Dan and my kids can't pick who is who (not even Rowan). Now Dan can lie and say that the picture of him sitting nakey, backwards, on the potty is really Rowan! He he he. Rowan will believe it.

Friday, January 19, 2007

Rock on!

Everyone should be a Rock Star! At least for 5 minutes.

O.K. so this picture doesn't much look like I'm rockin' out but 10 minutes later I sure felt like a rock star!

SC was my partner in crime for this school visit to JM Elementary. SC is a Librarian and I'm a library assistant at our local Public Library. We were admiring our lovely set up for the 1-3 grade assembly (that's when SC took the pic of me hamming for the cameraphone) when the classes started to arrive. We took a look at eachother and we commented that they looked a little big for 3rd graders. SC went to the teacher and asked what grade they were -- oops we had the 5th graders first so we scrambled to change our set up for the 4-6 grade group. The teachers did a fantastic job squeezing in 80+ kids into the tiny cafeteria but then had a difficult time getting them to settle down. You couldn't hear the teachers and even SC couldn't be heard using the mic and their PA system. I had an idea and I wasn't sure if it would work since they are all WAYYYY to young to know this song but. . .

it didn't take long for the whole group to get get the rhythm.
STOMP STOMP CLAP - STOMP STOMP CLAP- WE WILL, WE WILL ROCK YOU! the chant started with some boys in the back, I joined in & so did many others
WE WILL, WE WILL, ROCK YOU! STOMP STOMP CLAP - I put my fist in the air and yelled HELLO JM SCHOOL!

That was sooooo amazing to be there!

The rest of the assembly was, in my opinion, way cool. Hopefully the students felt the same way.

Wednesday, January 17, 2007

The Tangled Web

"Tell me lies, tell me sweet little lies" -Fleetwood Mac

Therin asked me the other day if I have ever lied to him. I defined lying and explained about little white lies and how sometimes when someone asks you "does this makes me look fat" they really don't want you to tell them that they are fat they just want a to know if they look good (I also told him the answer is always "You look beautiful") We then got side tracked when he listed 3 or 4 cartoons that had a character who asked that loaded question to other characters and how the other characters in the stories reacted. Then we talked about what would have been a better reaction and then we were at the store and I never really answered his question.

So, have I lied to him?


But I can't really give him the answer that question. Not yet. But I will. I'm bogging about it first so I can get my answer straight in my head. It's always worked better if I write things down before opening my mouth. I rarely get a chance to do it and since I've been let of the hook temporarily I'd better take the opportunity. Is this a form of lying? Probably.

"Shoe box, shoe box of lies...from my first little fib when I still wore a bib to my latest attempt at pretending I'm someone..." -Barenaked Ladies

I can't remember all of the things I've "lied" about to him. Not that I lie all the time but that what he perceives and what I perceive as a lie may be two different things. Have you seen Galaxy Quest? It’s a spoof of Star Trek with Tim Allen playing the Captain Kirk character. At one point the alien species they are trying to save finds out that the Commander and his crew are really actors. In the alien society no one lies. Ever. Nobody pretends, does make-believe, or uses their imagination to tell stories. The only being that they have encountered that has lied to them has also destroyed their home planet and all but a handful of their people are left. When the evil alien forces the actors to reveal the truth, the good aliens are crushed. More than just disappointment that their heroes are not who they thought they were their world was destroyed because they believed in something that wasn't real. . . a lie. All that is left of their home is a spaceship the good aliens created aIl because of the TV show that they mistakenly think is real. It is a tragic moment in a funny movie. Right now in Therin's world nobody important to him lies I am afraid of crushing him. I know that all children go through this at some point in time. In Peter Pan by J.M. Barrie it's those first little disappointments that pave the path to adulthood. What keeps Peter young forever is that he forgets the disappointments. I am a storyteller. It is part of my profession and I love to do it. What magic can be found in a story and the truth can be found in fiction is what draws me to books and storytelling. And, yet, technically stories, make-believe, can be perceived as a lie.

What about Santa? What about the Tooth Fairy? What happens to them? If I tell Therin now he'll ruin those fun fictitious fantasies for Rowan & Brenna. I'm probably going to have to try and break it to him gently before he hears about it from kids at school. That will be awhile considering that he spends recess & lunch by himself (hopefully that will be addressed in the IEP on 1/29).

I always get caught in a lie.

I have a hard time lying. That is: telling straight out non-truths to your face. My friends & family know immediately when I am lying. (Go ahead, this is the time to post those embarrassing stories in the comments field guys). My friends DJ & D used to live in the house that my family is currently living in. Therin & their son went to the same school and we didn't change their address when they moved out and we moved in so that he could continue going to school. DJ knew this lie by omission was eating me up and so she took pity on me and gave the school their new address. They had to change school districts. Sigh.

This next story isn't me - but it could have been. A person I know was doing a good deed for her daughter. Cable was acting funny and since her daughter was at work she called the cable company and pretending to be her daughter so it could be fixed before she got home from work. The cable company told her it was because the bill was late and the cable had been turned off until it was paid. She said that she'd pay it. Then they asked her for her Social Security Number. Well, she didn't remember her daughter's number so she said that she didn't have it handy. Well, she had to do a lot of swift thinking to explain why the name on the card she was paying with wasn't hers (see, definitely not me - I'd get flustered or caught here) finally after much story bending was able to do a good deed for her daughter.

"No I would not sleep in this bed of lies" - Matchbox Twenty

I've been working on this blog for a few days now and I still haven't fessed up to Therin about lies and lying. I am afraid that this will be the only experience that he will generalize. My fear is if I say, "Yes, I have lied to you" he will automatically assume that everything I have EVER said is a lie. Mommy = Liar One moment will negate all of the "I love you's" ever spoken. Most people will assume that that I am overreacting but they probably don't know Therin or haven't worked with autistic children. When I read "The Incident of the Dog in the Nighttime" by Mark Haddon (without spoiling the plot for those of you who haven't read it yet) Christopher, a 15 year old boy with autism, discovers a couple of rather large lies that his father tells and has such an extreme reaction that he pushes himself out of his comfort zone to seek a person in another town and try and find them alone overcoming sensory integration problems, sights, sounds, touch, smells that are all overwhelming to him because the person who loves him the most, his father, lied to protect him from emotional harm. I think this will make a good read-aloud for my kids someday.

Teach Your Children
by Crosby Stills Nash & Young

You who are on the road
Must have a code that you can live by
And so become yourself
Because the past is just a good bye.

Teach your children well,
Their father's hell did slowly go by,
And feed them on your dreams
The one they picked, the one you'll know by.

Don't you ever ask them why, if they told you, you would cry,
So just look at them and sigh and know they love you.

And you, of tender years,
Can't know the fears that your elders grew by,
And so please help them with your youth,
They seek the truth before they can die.

Teach your parents well,
Their children's hell will slowly go by,
And feed them on your dreams
The one they picked, the one you'll know by.

Don't you ever ask them why, if they told you, you would cry,
So just look at them and sigh and know they love you.

I think I'll let him bring up the subject. If he does I'll ask him why he wants to know and either speak directly to his query or explain very plainly first that if someone has lied that doesn't make everything that they have said a lie.

Monday, January 15, 2007

A few of my favorite things. . .

Group Hug
Originally uploaded by amberthyme.
Watching my kids give eachother a group hug.
Pancake breakfasts.
Breakfast in bed!
Supervising playstructure building
Peanutbutter kisses.
Rainbows, in the sky or crystal sprays. Rainshines.
Watching fish swim.
Tide pools
Afternoon updates
Rowan's songs, "To the moon!"
Brenna's "best friends"
Therin's "well actually, Mom, did you know that . . ."
Al's jokes.
Shakin' my sillies out with 100 kids!
Tiaras (my princess & queen!)
Pedicures and someone to share them with (hi Mom)
Warm winter scarves.
Purple violets, pink roses, white mini daisies.
Iced Chai Latte
Camping with my family.
Long showers
Forest green
heck, forests!
Ocean sunsets
waves crashing
superhero capes
bubble baths

Saturday, January 06, 2007

Pancake Highs & Night time Lows

We had a few very nice weeks with good numbers. I don't like to talk about good numbers while they are happening because I'm afraid I'll jinx it. Superstitious? Yup! Brenna's numbers were still good but on the high end of her spectrum on Thursday when we did her site change. She was a little higher than normal two hours after her site change but it is not unusual for her to go a tad high. Still higher than I like at 3 a.m. 277. The next morning she woke up at 205. I checked her blood ketones - nada.

Then we had pancakes.

Why did I make pancakes when Brenna had been a little higher than normal? Because I was home and could actually spend the time making pancakes. I usually make a huge batch and freeze the leftovers for instant snacks later in the week. Cheaper than Eggo! If I have wheat flour it's usually healthier too. But, no matter what we do she goes really high with pancakes. 414. Made REALLY sure she had no sugar free syrup on her fingers and tested her again. 380. Not a single number under 200 all day long so I kept an eye on her and checked her site but it looked good. After dinner I noticed that special "insulin" smell when I was blowing raspberries on her tummy so we did another site change -- she was really mad about that. Brenna fought harder than she's fought in awhile. I try to keep diabetes routines low key: I give her a hug, comment about her behavior, ("Wow, you sat so still. Thank you!" or "You must be frustrated with getting poked today, you wiggled a lot.") and move on to the next thing (play dough, coloring, dress-up, playing, lunch, whatever). After dinner is our nighttime routine and thus not something very exciting to her so I popped in a Greg & Steve CD and we all danced for about half an hour.

Recap: the day was highish, way high, nearly high, insulin smell, site change, dancing, bed.

What's this a recipe for? You guessed it! That night time low. Al even gave her ice cream for snack that night. She went to sleep so easily. Al and I hung out watching the TV. I started nodding off and on my way to bed asked him to test Brenna before he headed that way. I was out when my head hit the pillow. All of a sudden, Al's shaking my shoulder saying "wake up, I need your help she's 89, she's 89." I grab a tube of frosting and Al gets some milk. We meet back at Brenda’s bed and start squeezing the tube into her mouth. I realize at this point that it's red frosting and somewhere my mind pops up with "I hope this doesn't get all over the sheets" and "awwww, I should take a picture. With the red all over her mouth she makes a very sweet vampire". Don't ask me where it comes from. She's shaking her head trying to get me to stop and yet she's still asleep. We dribble some milk into her mouth, wait 15 minutes, and she's 88. Lovely. At least she's not dropping too fast. We succeed in waking her enough to finish half of her milk and squirt some more frosting into her mouth against her wishes. (Isn't that bizarre? I have to force my frosting girl to eat frosting). Finally another 20 minutes pass and she's at 111. I tuck her in and flop back into bed. In the morning 213. Sigh. A new day to attempt to get that number below 200 and keep it there.


I still haven't gotten the hang of balancing exercise and insulin and food. Some days she runs like crazy all day long and it doesn't seem to affect her numbers. Some days she goes low. I can't recall a time when she has gone high after exercise. But. . . hours or days later exercise is supposed to affect her BG readings. I don't know how to calculate for that. I suck at math on regular days. Well, not suck really, but I work really hard and take a long time to get to the right answers. If somebody told me that my child would be diagnosed with a disease that required me to be able to perform daily math calculations and administer shots I would have told them that they were being incredibly cruel to even suggest such a combo considering my aversion to mathematics and my needle phobia. I did have a teacher tell me I was going to get diabetes and that I'd have to get over my fear of needles. I think her daughter had diabetes and she was ticked that I had the luxury to have such a phobia. I WISH I had gotten diabetes instead of Brenna! If I could go back in time my 12-year-old self would never understand that kind of wish and she'd be hurt that I can sympathize with that teacher. Strange what curveballs life throws at us isn't it?

Friday, January 05, 2007


There is a very lively discussion happening over at Diabetes Mine. It's in the comments section of the post What Makes You Think I'm Brave? It got me thinking. I say it to Brenna all the time. "You're so brave!" Maybe she'll become sick of hearing me say it and tell me to stop some day. Maybe, just maybe, I can rub together two brain cells and find something more, something different to say to describe my outsider's view of her experience. I watch her, knowing she doesn't understand, and it seems to me like bravery. Maybe I should define bravery.

Bravery, to me, is choosing to get the job done or to do what is right even though you are afraid. Amy at Diabetes Mine describes herself as "Chicken-shit" but she does what must be done. Is it really that far off? I might have a tiny inkling of how she feels. I do what needs to be done for Brenna and I don't feel brave -- I feel numb or angry or scared but I do it anyway. I give my sweet girl the opportunity to poke my finger (and flinch when she does it). I wish I could be the kind of brave that puts on armor, jumps on a horse, and whacks to pieces the evil D-beast for my daughter and knows that at the end of the day everything will be fine. It WILL be fine! I work at making it fine and at the end of the day I'm still afraid it won't be. Afraid of complications. Afraid I'll sleep through the alarm again and she'll go too low in the middle of the night. Does all this make me brave? Yes. Do I have to like it? NO!

This is why I'm up so late reading so many d-blogs and drinking in the experiences of those who have dealt with this far longer than I. Parents whose heartache I share and PWD's who are living through what Brenna is experiencing give me a perspective far broader than daily life in my own little world.

Oh, all of that, and it's time test Brenna again.

I guess it's time to be brave.

Pincushion & a little Ramble

Originally uploaded by amberthyme.
Not enough blood. I hate having to poke Brenna when she's asleep but when I have to poke her a second time it really frustrates me. Some days she bleeds like crazy and other days I end up poking her 2 or 3 times before I get any blood. I don't want to dial the lance up too high. This was taken last week when I was home at naptime.

My poor baby is a pincushion. Tonight I had my husband set up the site change stuff while I was giving Brenna a bath. My goal is to have everything ready, give her a brief choice about where the site will be, (if she doesn't choose I pick for her) and to make it as fast and painless as possible. Since I can't seem to get close to painless I aim for swift so we can minimize trauma and get on with the hugs, kisses, and something fun. Al forgot to take the sticker off of the back of the site. This is the second time he's done it! I know he feels bad but I had a very hard time being sympathetic to him as I was trying to calm her down then hold her down for a second site change. Nobody, child or adult should have to be a pincushion for the rest of their lives.

That is the main reason that I post her pictures on Diabetes Made Visible -- people need to see the faces and the lives of the people who have diabetes. If you haven't taken a peek follow the link or click on the button over in the sidebar.

There are some funny pics and some wonderful art photos (I never knew I could find a row of insulin bottles beautiful) and the everyday pics of test strips, testing, blood drops on fingers. There is one of Gracie crying with a blood smear on her finger -- I want to give her and her mommy Sarah a hug and make them both feel better every time I look at the picture. How can people in power NOT want to do anything when you see and read how all of these wonderful people are living daily with this disease.

Thursday, January 04, 2007

Postcard from School

Mrs. L sent Therin a postcard with a special message just for him. I just love his teacher! I have been reminding him that school will start again soon and trying (with various amounts of success) to give him homework during the break so that his routine is continued, at least a little bit. I think that this postcard is a gentle, yet fun, way to remind him about school. Mind you, I'm sure she does this for every student but it is especially helpful for Therin.

Routine is so important for him. Even breaking routine for something fun can disrupt his equallibrium. Today, my friend Sam, took Therin & her nephew to the movie "Happy Feet". She came and picked him up and they had a great time. During dinner he started throwing mini tantrums. Brenna plays with a dinosaur on her dinner plate mushing pasta sauce all over it and herself. He screams, "NO TOYS AT THE DINNER TABLE! I WISH SHE WOULD NOT PLAY WITH THAT RIGHT NOW! MAKE HER PUT IT DOWN!" Rowan starts to tell a story and he starts screaming "That's not REAL! Stop TALKING!" I am almost positive it's because of the excitement today at the movies and the eminent arrival of the start of school. I wish that enjoyable things wouldn't disturb him so much.

Break routine to do something fun? Or will you just end up tearing your hair out and scrambling to find fun things to do with cranky kids? MileMasterSarah asked the same questions a couple of days ago. She was thinking about New Year's Eve. All of these routine problems connect back to generalization(which MileMasterSarah also wrote about -- thanks for jumstarting my brain Sarah).

People with autism have a difficult time taking knowledge and applying it in new situations. Each year is a brand new school year. Therin doesn't apply last years knowledge of classroom routines to the new class. To him it's a different room, a different desk, a different teacher, he doesn't immediately see the pattern Bell, Desk, Recess, Desk, Lunch, Desk, Recess, Desk, Home - he focuses on all the little differences in the middle. But it's more than just focusing on the little things. Generalization takes a certain mindset. Most of us take for granted that when you know how to swim that you will be able to swim in the ocean, lake, and reservoir as well as a pool. But if you are autistic you may need to have it explained to you that it is O.K. to swim in an inside pool, an outdoor pool, the lake, the ocean, ect. Around here there is a big water safety program geared toward keeping kids out of canals. We live in an agricultural area so there are many canals criss-crossing the Central Valley going right through towns (looking so inviting durin 104 degree weather). Splasher the Frog comes out to the schools and along with a helper teaches kids about not swimming in canals and other water safety tips. I have to tell Therin that the water safety tips apply to all bodies of water. I don't have to worry about him then concluding that if you can never swim in a canal you can never swim in a pool. When we have talks like these I try and think out loud and model generalizing verbally. Is it working? Who knows. Only time will tell. Do these examples make sense? I'll let you be the judge of that.


Bath & site change time. I know it's kinda late for a site change but . . . the sooner we start the sooner it's done.