Thursday, June 28, 2007

art work

I am on the verge of creating a new art work. I am going to need several yards of brown, blue, green and yellow fabric.

I started Dandelion Wine tonight by Ray Bradburry. It is full of beautiful pose and childhood memories brought to life as only a true writer can do.

Good authors always make me want to write, good painters always make me want to paint. and yet in the business I chose to pursue it was the lack of good that pressed me forward. And yet, even in my own company it is something I am still fighting against. The lack of good. The marginal is not acceptable. The unlearning is not acceptable. Nothing should be prepared for sale unless it is beautiful, useful, and nearly exceptional.

What is it that drives us to do better? Is it merely to one up someone? I don't think so. I believe it is our destiny, to become perfect. To strive towards perfect. To create something to honor the perfectness in the world around as- nature is perfect. Can we honor her in mere capitalism? No, we must honor her with art, with love, with mimicking her perfect systems and learning how to become one with them.

And yet one must wonder when we look at the wal marts of the world, if they understood the purpose of business.

The real purpose of business is not to create a profit. It is to create a prophet- to do something so well that people can't help but want to (and do) throw money your dirrection.

Consumerism has yet to understand this. It is the theory of buying 1 good one, and skipping the 99. Of filling our lives with things that will work well- for many years and not bothering with the rest. Again, it is to honor what nature gives us and not to take unnecessarily.

It is also the theroy of doing for ourselves, instead of hiring (or paying) others to do for us. For when we do not kneed our own bread we loose something. When we do not raise our own children, we lose a lot. When we let money stop us from doing the daily life affirming rituals that have long bound us to the earth, we have lost our understanding, our connection with the life giver.

Monday, June 18, 2007

Wednesday, June 13, 2007

Ten Things Every Child with Autism Wishes You Knew

Some days it seems the only predictable thing about it is the unpredictability.The only consistent attribute, the inconsistency. There is little argument on any level but that autism is baffling, even to those who spend their lives around it.

The child who lives with autism may look "normal," but his or her behavior can be perplexing and downright difficult. Today, the citadel of autism, once thought an "incurable" disorder, is cracking around the foundation. Every day, individuals with autism show us they can overcome, compensate for, and otherwise manage many of the condition's most challenging aspects. Equipping those around our children with a simple understanding of autism's most basic
elements has a tremendous effect on the children's journey towards productive, independent
adulthood. Autism is an extremely complex disorder, but we can distill it to three critical components: sensory processing difficulties, speech/language delays and impairments, and whole child/social interaction issues.

Here are 10 things every child with autism wishes you knew.

1. I am a child with autism. I am not "autistic." My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight) , myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?

2. My sensory perceptions are disordered. This means the ordinary sights, sounds, smells, tastes and touches of everyday life that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you, but I am really just trying to defend myself. A "simple" trip to the grocery
store may be hell for me.

My hearing may be hyperacute. Dozens of people are talking at once. The loudspeaker booms today's special. Muzak whines from the sound system. Cash registers beep and cough. A coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input, and I'm in overload!

My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today (our worse yet is wearing cologne), the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles
on Aisle 3 with ammonia. ... I can't sort it all out, I'm too nauseous.

Because I am visually oriented, this may be my first sense to become overstimulated. The fluorescent light is too bright. It makes the room pulsate and hurts my eyes. Sometimes the pulsating light bounces off everything and distorts what I am seeing. The space seems to be constantly changing. There's glare from windows, moving fans on the ceiling, so many bodies in constant motion, too many items for me to be able to focus - and I may compensate with tunnel
vision. All this affects my vestibular sense, and now I can't even tell where my body is in space. I may stumble, bump into things, or simply lay down to try and regroup.

3. Please remember to distinguish between won't (I choose not to) and can't (I'm not able to). Receptive and expressive language are both difficult for me. It isn't that I don't listen to instructions. It's that I can't understand you.

When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%^*&^%$&*" Instead, come speak directly to me in plain words: "Please put your
book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it's much easier for me to comply.

4. I am a concrete thinker. I interpret language literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is, "This will be easy for you to do." When you say, "It's pouring cats and dogs," I see pets
coming out of a pitcher. Please just tell me, "It's raining very hard." Idioms, puns, nuances,
double entendres and sarcasm are lost on me.

5. Be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused, but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation, or other signs that something is wrong. There's a flip side to this: I may
sound like a little professor or a movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits, because I know I am expected to respond when spoken to. They may come from books, television or the speech of other people. It's called echolalia. I don't necessarily understand the context or the terminology I'm using, I just know it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am very visually oriented. Show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of patient repetition helps me learn. A visual schedule is extremely helpful as I move through my day. Like your day planner, it relieves me of the stress of having to remember what comes next, makes for smooth transitions between activities, and helps me manage my time and meet your expectations. Here's a great web site for learning more about visual schedules
http://www.cesa7. newweb/content/ rsn/autism. asp

7. Focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough or that I need fixing. Trying anything new when I am almost sure to be met with criticism, however constructive, becomes something to be avoided. Look for my strengths and you'll find them. There's more than one right way to do most things.

8. Help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply don't know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, I may be delighted to be included.

9. Try to identify what triggers my meltdowns. This is termed "the antecedent." Meltdowns, blowups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented.

10. If you are a family member, please love me unconditionally. Banish thoughts such as, "If he would just ..." and "Why can't she ... ?" You didn't fulfill every last expectation your parents had for you, and you wouldn't like being constantly reminded of it. I didn't choose to have autism. Remember that it's happening to me, not you. Without your support, my chances of successful,
self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you I'm worth it.

It all comes down to three words: Patience. Patience. Patience.

Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. I may not be good at eye contact or conversation, but have you noticed I don't lie, cheat at games, tattle on my classmates, or pass judgment on other people?

You are my foundation. Think through some of those societal rules, and if they don't make sense for me, let them go. Be my advocate, be my friend, and we'll see just how far I can go.

I probably won't be the next Michael Jordan, but with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh. They had autism too.

Freelance writer and consultant Ellen Notbohm is a columnist for Autism/Asperger' s Digest and co-author of 1001 Great Ideas for Teaching and Raising Children With Autism Spectrum Disorders (Future Horizons).

She favors "common sense" approaches to raising her sons with autism and AD/HD. She lives in Oregon.
By Ellen Notbohm
South Florida Parenting

Tuesday, June 12, 2007

more pics from another demention

Ian climbing, his rendition of the mayo clinic, cheesy smile, favorite mode of transportation ( he rode in this before he walked)

Pics from the Hospital Universe

Mommy- doing what
mommies do in hospitals- reading...

Ian in the wheelchair the first day he was allowed to move.

Ian playing with the trains, in the toddler play room, and his cute little smile.

Pee happy!

We are happy. Every time we went to cath Ian today, his diaper was nice and wet. And when I did the computations, he is peeing as much at home as they got out of the caths.

Our sandbox is in and thursday we get our Rainbow. The kids are very excited. Tonight in the beautiful evening weather I took down the jungle in our back yard and ran the lawn mower out of gas. Luckily Mike knew that there was another tank.

Monday, June 11, 2007


We are home, and on everything else I claim complete apathy.

and we are out of here

as soon as the nurse brings that paper to sign. Dr. Husman, didn't say anything he hadn't said last time we talked with him. OF course we waited 2 hours for 1 minute with the doc.


Sorry about the late post this morning. Ian has been moving so fast I haven't had time to deal with it.

Dr Raffle has approved our departure, on conditions that Dr Husman (urology) agrees. We are feeling mostly impatient, (or is that inpatient?) for getting out of here. Dr Husman is in surgery and will come by afterwards to see Ian.

Meanwhile, I am looking forward to real food- Maybe I will sneak back to the hotel for lunch and eat the rest of the salad, pack up our bags....

So that is what I know.

Day 6, 12:30am

Ian peed in his diaper and didn't need to be cathed tonight. Does anybody know what that nice little ultrasound the urology techs use to tell how much urine is in his bladder is called, let me know. I may just have to get me one of those. They are really handy on knowing if you need to cath or not.

Ian is now blowing bubbles in the grape juice and We just finished watching "Stranger then Fiction" I think I might have to recommend that one.

Ian is being cute again. His blue eyes shining out with his mischievous, yet shy smile.

Sunday, June 10, 2007


Ian just fell asleep under the strangest of circumstances. First of all he played hard all afternoon, forgoing his nap. Then we went out to eat at the cafeteria and walked in the courtyard, and made it back in time for the urology tech to do his thing.

Of course that is when we discovered he had a slightly poopie diaper, and the poop got up into the dressing on his incision. So we had to call in the nurse to change the dressing. She asked if he could lay back up to better clean it. So we put Ian, back side up on the bed. Ian didnt want to lay on his belly, so his but was up and his head was at the strange angle, meeting the sat up bed.

And while he was being cleaned and redressed he fell asleep. Kinda funny- but we took pitty on him and lowered the angle of the bed. He is still asleep. Must have played hard.


Hi y'all,

I am feeling kinda bored today. I finished my book yesterday. Ian is doing fine. We are just finishing up lunch and are trying to talk Ian into going for a walk outside with us.

Believe it or not, that is about all I know right now. Maybe it's nap time.

Sunday, Day 5

9:45 am

Well we are not going home today. Ian is getting his dressing off, and more used to being catheterized. I can tell I have written that word too often, I spelled it right the first try.

My personal theory is that they are waiting on his actual doctor to release him (and not just some intern or resident that has to work all weekend).

Ian is playing spoiled prince this morning. He doesn't want to eat the ham in his omelet. But I think overall he is happy to eat and he does look forward to going back to the play room.

I slept like several rocks last night. Not waking up until Mike called and asked if I wanted breakfast at 9am. Mom is taking Ewan and Clay to church. She let sleeping Galen lie. Half of me wonders if Galen will be awake before she gets back. After staying a night at Chester's he might just sleep most of the day.

We had a sweetheart of a nurse last night. A 300 pound younger man. He reminded me of a guy a dated in college. Now days though, I would be less likely to let the weight stop me dead in my tracks. Anyways, it is always nice to come across somebody so sweet, gentle and kind.

Well, That is about all I know this morning.

Have a wonderful day!

Saturday, June 09, 2007


He napped, he was cathereterized, he played, he ate, he played, he played, he played, he played and is eating again.

I can go back to the hotel as soon as they cath him again. It is my night to sleep!

And Ian is wide awake again. He attention span this evening was about 2 minutes. He really was making up for lost time in the play room. I hope tomorrow he can start making up for lost time at home :)


Wish I could upload the pics from here to show you what Ian has down these last 4 hours. He played in the toy room, he used a little car and walked down the hallway and back, he crawled all over the boat in the toddler play room.

At first when he started walking he was very unsteady, I though for sure he was going to fall over. Now there is nothing he can't do (as far as locomotion). After such a busy afternoon- he just crawled back in bed and fell asleep. Nap time!


Ian is up, out of bed and enjoyed playing in the play room. He is in the wheel chair, and has now had enough of playing and wants to go back to bed.

I just walked him back with Daddy. It was tough on him. But so was sitting up several hours ago. He is on no drugs right now. But tylonal is available should he want it- which it sounds like he might. Meanwhile he is watching Thomas the Train. Mike and I both volunteered to go fix lunch when that came on.

Ian built a big building with some interlocking plastic toys. He told everyone it was the Mayo Clinic. Don't worry, I got pics.

day 5, 9:29am

Ian is a thirsty boy. He has just downed 12oz of juice and asked for more. He is sitting up -leaning on the upright bed. His bladder has been emptying itself all night with the 30 degree incline. We are hoping for more self emptying today that he will be up and walking.- yup that is the goal today to get him up and walking.

Friday, June 08, 2007

11:42 pm

Ian has been awake and talkative again. He just downed 10 oz of juice and had his sheets and clothing changed.

My other boys are all tucked for the night. Galen is with Chester and Clay and Ewan are at Grandma's. Galen dropped Chester's baby bunny tonight and nearly gave Amy a heart attack. The bunny was knocked out for several minutes. I am pretty sure it bothered Galen more then he let on, but he can has a hard time showing or expressing feelings.

Ian looks like he might be falling back asleep. When it was time for the tylonal, he wasn't in pain, so he didn't get it. It is available when and if he needs it.


Sorry I missed the just before everyone leaves work update. I was napping. Yup, I get to take the night shift here tonight. I also did laundry and made dinner. But now I am back and ready to yap at you about all that went on when I was gone.

Ian has been very awake today and asking all sorts of questions of everyone that would come in. He asked them all about when they are going home, and how they are going home. He quizzed Raffel's nurse on it for 3 minutes. And he has stated that he wants to go home. Meanwhile he is making us giggle with his cute literalisms and turns of phrase.

Ian actually napped while I was out. But he is just waking up now. The weekend doc came in and said he was allowed to sit up to 30 degrees tonight. Tomorrow he can sit up all the way, and maybe get out of bed tomorrow. Then it looks like another day beyond that to stabilize his bladder issues.

Ian wants pizza with chocolate pudding on it. But he is having pizza now and the chocolate pudding is being served separately.

12:02 pm

Ian has enjoyed a good breakfast and has now ordered pancakes for lunch. They are hoping to get him up this afternoon, after the doctor comes by. Then he can move some and maybe even go down to the playroom. They are going to remove his catheter and then try to cath him 4 times per day as we are suppose to do at home. We will see how this works out.

Mike is taking his nap back at our room, and I am enjoying my book. Meanwhile Ian remains mostly content on his back watching his drug of choice, Animanics flavor.

He is generally feeling better, less fussing, whining and painful periods. We will let you know what the doc says when we finally see him sometime today.

Mayo Day 4

Ian's Iv came out during the night. He now has a band-aid and is subsisting on normal tylonal right now- no more morphine! He was a little sore when he woke up this morning, and starting calling for mommy- so here I am.

We tried to order breakfast for him, but the room service said they had no orders for him, so we talked with the nurse- who couldn't find his nurse- until Dr. Raffel's nurse came in and was able to change that for us. And now he wants scrambled eggs with bacon.

The Doctor himself probably won't come in until afternoon. So here we wait again.

Thursday, June 07, 2007


well, Ian is a night owl here. He seems to be more awake at night lately. He has enjoyed some popcorn and a movie. He is getting some flem in his lungs. They want him to blow a pinwheel to get some of that loose, but he doesn't want to.

Tomorrow he should be able to sit up and I hope that will help. Well, I have tonight off, so there will probably be no more updates until I am back in the morning.


Nothing new is happening here. Ian is enjoying watching TV (Pinky and the Brain), and has a vacuum catheter extraction every 2 hours. He doesn't love that. We will have to talk to a doctor about what to do when we are home with him.

It is very nice to have a kitchenette and bedroom right across the street from Ian's room. I was able to take a nap and make dinner that I brought over to share with Daddy and Ian. Ian enjoyed the strawberries and yogurt.

My other boys are now home with grandma and grandpa. Last time I heard they are still looking for a nanny person up there. If you wish to volunteer please call Lynn.

Ian keeps talking about how he wants his family to be forever. We have reassured him that we are planning on it.


Ian had over 500 cc in his bladder. They are learning that they have to extract it because with out gravity to help it come it, it will just sit there, and grow. He is also very sensitive to catheter movement. We will have to talk with some Doctors to see how to handle this.

9:13 am

Ian has been gobbling down yellow popciles every few minutes. He has also enjoyed pudding, hot cocoa and apple juice. He has been awake and watching Mythbusters. We have seen the intern and the nurse, but Dr Raffle hasn't shown his face yet. Ian is now propped up on his side so he is not lying directly on his back.

mayo day 3, 6:58 am

Ian has slept the night with some pain meds around 4 am (when they gave the antibiotic). He just woke up at 6:20 crying and hot. His fever is running around 100. So he got more morphine and tylonal. He has just went back to sleep. Late last night, when his fever returned he started complaining that he was "sweaty". I asked him how else he felt. He said "warm".

Wednesday, June 06, 2007


Ian is running a fever, so on top of the morphine and the medicine to help him deal with the queeziness of the morphine they are giving him tylonal, but at least the tylonal is by mouth.

I went back to the hotel with the boys but Ian wanted me with him when he woke up, so here I am again. But this time I plan to stay the night.

Meanwhile I seemed to have misplaced my purse. There has been no activity on our cards yet, so I am hoping we will find it soon- maybe under something. Anyways...that is what I know now. Ian is watching a movie and I plan to get some bedding and read away. Tomorrow I can take time to nap at the hotel, since sleeping in the hospital is challenging at best.


Well, Ian is now in the room and is snoring softly. He has less tubes and wires on him then he did the first time he got a hospital room here. He is under morphine to help his pain and make him sleep-a lot. As far as we know there are no restrictions on his food- so he may or may not eat today depending on what he is awake for and/or what he feels like.


We just spent 10 minutes trying to get my computer to connect to the net again. The surgery is done, the accomplished what they had planned on accomplishing. The Doctor said his internal anatomy is a little weird. The spinal fluid sack was not just a spinal fluid sack but held a cyst of the spinal cord it's self. The bottom of the spinal cord did not form normally, but made a ball and the fluid sack was around that. He cut it above the ball and the spinal cord went back up near where it is supposed to be.

It appears as if the nerves to his bowels and bladder did not form, for they usually come off the very bottom of the spinal cord. However, even though this is being said by the doctors, does not mean he has not slowly been acquiring function through some other, maybe secondary nerves, as has been discovered in the cases of quadriplegics.

My personal research and connections give me much hope for his continued acquisition of function, meanwhile the surgery was successful in accomplishing all of it's designs. Ian should be coming up from recovery in 15-30 min.


the main part of surgery is done and they are starting to close.


Everything is going well. Everything is going well. We will be hearing more....soon?


I received the call. They cut him at 12:30pm. We should be getting an update every 1-2 hours while they proceed.


Ian is in surgery. We haven't received word yet that they have cut, but we are expecting that soon. There is a fair amount of prep work for them to do first.

Day 2 at Mayo

We are now in our room at St Mary's waiting for directions on getting Ian dressed and ready for surgery. I am 98% sure this will continue to be our room throughout our visit. The room # is 3-110

Our phone number is 507-287-4623 (to the room)

Hospitals are always hurry up and wait places. But they have brought Ian some leggos so he is happy. Later today I will go and get our music player and some Cds to bring the spirit into the room.

Tuesday, June 05, 2007

Day 1 at Mayo

For all of you inquiring minds out there, today was day 1 at Mayo. Mike sat on the kids while Mom, Ian and I went to the 2 appointments, stood in line and talked to doctors for about 4 minutes total.

We did all that work so we could be cleared for surgery. Our report time is 9am tomorrow. We are still looking for sitters :)