Every Action

has an equal and opposite reaction:

Jake off of his Adderall XR:

• more verbalization
• more silliness
• less able to sit in class
• more clearly visible by his reactions that he is “there” because he is making sounds and laughing appropriately at funny things
• I feel like I need to research every drug on the market to find him a new drug that will help him focus without losing what little verbal ability he has.

Travel to Tahoe, Southern California, East Bay and everywhere else we went this summer:

• Lots of great memories for kiddos and grownups
• Nice things to reference in the car when we there is a crybaby Lucy who misses her cousins
• Out of control laundry and suitcases that have not officially been unpacked completely in over a month.
• Nagging feeling that I am behind

I have finally done all of the laundry:

• can’t find any time to fold it unless I am awake at 2am
• can’t find anything because it is in a gajillion baskets all over my bedroom
• brief sense of accomplishment until I open the dryer and find more clothing that, while clean and dry… is still magically not going to be folded and put away.
• constant feeling that I am behind

Date night with Descartes on Thursdays:

• happy husband and wife who actually talked…to each other.. throughout an entire dinner about more than just who needs to go potty.
• less cash
• less time to do crappy laundry (see above)

Can I Sit With You? book number two being published this fall:

• whooo hoooo excitement and thrill of accomplishing something meaningful
• constant feeling that I am behind

Lucy is most precious bright star:

• no sleep for precocious toddlers in our family apparently because she has not been asleep before 11pm more than once in the last two weeks.
• I am worn out by 10 am each day
• have seriously contemplated nearly full time preschool/daycare so at least someone can stimulate her for 8 hours a day.
• breath-stealing guilt that I am sometimes annoyed by her smart, capable, little personage, after my oft-mentioned heartache of having a child with disabilities. 

Finally took care of myself and went to the doctor for shoulder pain:

• not only do I have a rotator cuff injury, but something is f’d up in my elbow as well.
• need to go to physical therapy 2-3 times a week for at least a month
• personal mini-crisis wondering how the hell I am supposed to be strong enough to care for my disabled child when I am only going to get older and weaker
• guilt for not going to the gym regularly so I could have avoided this injury, be in better shape and live a healthier life for me and my family.

I am now going to clean the guest room, one room, (I can do it) while Lucy is FINALLY taking a nap. 

Every Action

has an equal and opposite reaction:

Jake off of his Adderall XR:

• more verbalization
• more silliness
• less able to sit in class
• more clearly visible by his reactions that he is “there” because he is making sounds and laughing appropriately at funny things
• I feel like I need to research every drug on the market to find him a new drug that will help him focus without losing what little verbal ability he has.

Travel to Tahoe, Southern California, East Bay and everywhere else we went this summer:

• Lots of great memories for kiddos and grownups
• Nice things to reference in the car when we there is a crybaby Lucy who misses her cousins
• Out of control laundry and suitcases that have not officially been unpacked completely in over a month.
• Nagging feeling that I am behind

I have finally done all of the laundry:

• can’t find any time to fold it unless I am awake at 2am
• can’t find anything because it is in a gajillion baskets all over my bedroom
• brief sense of accomplishment until I open the dryer and find more clothing that, while clean and dry… is still magically not going to be folded and put away.
• constant feeling that I am behind

Date night with Descartes on Thursdays:

• happy husband and wife who actually talked…to each other.. throughout an entire dinner about more than just who needs to go potty.
• less cash
• less time to do crappy laundry (see above)

Can I Sit With You? book number two being published this fall:

• whooo hoooo excitement and thrill of accomplishing something meaningful
• constant feeling that I am behind

Lucy is most precious bright star:

• no sleep for precocious toddlers in our family apparently because she has not been asleep before 11pm more than once in the last two weeks.
• I am worn out by 10 am each day
• have seriously contemplated nearly full time preschool/daycare so at least someone can stimulate her for 8 hours a day.
• breath-stealing guilt that I am sometimes annoyed by her smart, capable, little personage, after my oft-mentioned heartache of having a child with disabilities. 

Finally took care of myself and went to the doctor for shoulder pain:

• not only do I have a rotator cuff injury, but something is f’d up in my elbow as well.
• need to go to physical therapy 2-3 times a week for at least a month
• personal mini-crisis wondering how the hell I am supposed to be strong enough to care for my disabled child when I am only going to get older and weaker
• guilt for not going to the gym regularly so I could have avoided this injury, be in better shape and live a healthier life for me and my family.

I am now going to clean the guest room, one room, (I can do it) while Lucy is FINALLY taking a nap. 

Elevated beta-Alanine

Yeah. So that’s what I’ve been Googling for the past hour. I don’t even know what made me look at a 4 year old blood test with a spread of numbers indicating the various levels of amino acids for Jake… but I started looking, and then I really started looking because I remembered that he had elevated beta-Alamine.

So what? So nothing. Every few months or so I pick all of those “odd” things out of Jake’s old medical records and Google them again. It happens sometimes that I will find an article at www.pubmed.com

This time I found another parent who has a boy who had a new autism dx and elevated beta-Alanine.

So now there’s two of us Googling it, and probably only stumbling upon our own queries.

Anyone else ever had a kid with Cerebral Palsy ataxia, ADHD, panic disorder, sleep disturbances and Autism who had a blood screen that showed elevated beta-Alanine?

Go. You know you want to check that last “AMINO ACID, PLASMA” screen

Regret

I haven’t been posting much lately. Twitter has been fun (see right hand bar below) but in general I think I have been very down on myself about how I am helping Jake.. or rather not helping Jake become the little boy we think he can be.

I am constantly tortured by how annoyed I get. How I lose my patience. How I must hire someone to do tasks with him that make me sad and frustrate me and keep me from caring for the rest of my family. I watch other women with their kids, all the things they do to help their kids grow, and I feel a constant, ever constant feeling that I am not doing enough. That I am in fact not doing anything but waiting for time to pass. My feeling of regret for time lost, for therapies untried, looms over me until I can barely breathe, let alone write down what I am feeling.

I am so ashamed that even this outlet can’t hold it all. I have the very best of friends and I can’t even bring it up because I am so scared they will actually say out loud how disappointed in me they must be. I guess it’s time for therapy.

or at least time for me to read Dear Abbey… who I variably read or don’t read since I rarely get to a newspaper lately, but this morning I glanced at her Q&A and saw a line that I will keep in my back pocket “regret is the cancer of life”.

Is there chemo available?

So Are The Days of Our Lives

I received a birthday gift from Bridquet that was so thoughtful… so full of thought and effort that it may be up there with the most precious gifts I have ever been given.

On the right-hand side of this blog there is a little note, that has been on there since I started writing… something about the fact that for 15 minutes of each day I think that we are not going to make it… it is all too much, and I am no good at this job, and I am overwhelmed, and my body aches, and Jake is never going to be independent. I am not trying hard enough, and I have nothing more to give to my children and my marriage. I have lost myself. I am failing my special-needs child. I am not using the gifts God has given me. I have no faith.I am tired and there is nothing to serve my family for dinner. My house is a mess. My vocabulary is weak. My hair is thinning and has split ends. I never sing anymore and I am too quick to judge others. I have no patience. I am lost and it is all hopeless.

…and then minute sixteen comes and we are all going to be okay. Really okay. All of the previous moments are nearly erased (save for the aching back)…and we just move forward. We do our best; praying for great things and planning for the realities of our life. I am the strongest woman in the world, and possibly the luckiest.

Well Bridquet bought me a quarter-of-an-hourglass. It is beautiful and looks very much like the photo here. What is even more meaningful are the words she spoke to me..and I am paraphrasing.

For those 15 minutes it is like you are in the hourglass. Trapped and struggling, slipping bit by bit with nothing to grab on to, nothing to stand on. You are stumbling and falling and nearly buried alive. It feels like you will never get the right side up again.

and here is the part that was so kind

You are the sixteenth minute. You land upon the top of those grains of sand and you are grounded and standing tall and everything is under control. You are the sixteenth minute for your family. You are what makes it so it will all be okay again.

So Are The Days of Our Lives

I received a birthday gift from Bridquet that was so thoughtful… so full of thought and effort that it may be up there with the most precious gifts I have ever been given.

On the right-hand side of this blog there is a little note, that has been on there since I started writing… something about the fact that for 15 minutes of each day I think that we are not going to make it… it is all too much, and I am no good at this job, and I am overwhelmed, and my body aches, and Jake is never going to be independent. I am not trying hard enough, and I have nothing more to give to my children and my marriage. I have lost myself. I am failing my special-needs child. I am not using the gifts God has given me. I have no faith.I am tired and there is nothing to serve my family for dinner. My house is a mess. My vocabulary is weak. My hair is thinning and has split ends. I never sing anymore and I am too quick to judge others. I have no patience. I am lost and it is all hopeless.

…and then minute sixteen comes and we are all going to be okay. Really okay. All of the previous moments are nearly erased (save for the aching back)…and we just move forward. We do our best; praying for great things and planning for the realities of our life. I am the strongest woman in the world, and possibly the luckiest.

Well Bridquet bought me a quarter-of-an-hourglass. It is beautiful and looks very much like the photo here. What is even more meaningful are the words she spoke to me..and I am paraphrasing.

For those 15 minutes it is like you are in the hourglass. Trapped and struggling, slipping bit by bit with nothing to grab on to, nothing to stand on. You are stumbling and falling and nearly buried alive. It feels like you will never get the right side up again.

and here is the part that was so kind

You are the sixteenth minute. You land upon the top of those grains of sand and you are grounded and standing tall and everything is under control. You are the sixteenth minute for your family. You are what makes it so it will all be okay again.

Our House.. in the Middle of a Storm

Today:

• Sage had to borrow our house for bathing (hope it’s okay that I shared Sage) because her house was not cooperating in the plumbing department… sand bags and a new sump pump probably mean she will not be bringing the kids over later for a bath.
• I made a home made chicken pot pie while the power was still on this morning..as it turns out we never lost power and the chicken pie fell into the category of “Uhm, you don’t need to make that again honey.”
• Jake went out the dog door during a very, very bad bout of rain (while I was changing my shirt..he’s that fast). I had to chase him on the deck and bring his wet self back in. Oddly enough, even though we bathe him every single night he still smelled more like wet dog than our dogs do.
• I changed my shirt again.
• Lucy emptied the dog food all over the kitchen floor. Luckily it is dry food that had been placed in freshly washed bowls.. but I still think that CPS would not approve of “Chicken Soup for the Soul Adult Dog Food” as a healthy snack for children (again Jake is very quick).
• Lucy climbed over the side of her crib and came back upstairs refusing to take a nap.
• I got a migraine and threw up.
• While I was throwing up Lucy got a ball point pen off of the counter and drew all over part of her face (by accident I think.. she was trying to put the lid on and had the lid in her mouth.. hmm do you think she is copying mommy much?)
• While I was throwing up our larger Golden Retriever Chandler (he came with the name from Retriever Rescue.. and yes it is short for Chandler Bing) decided that he finally would deal with the rain and go outside to pee..only I had closed the gate so no one would escape anywhere while I was yakking…so instead…. oh yes, he did.. he PEED ALL OVER THE KITCHEN FLOOR! Do you have any idea how much liquid a golden retriever bladder can hold? Well it is enough to cover a 10×12 (or so) kitchen and the stairs that lead to the back door.
• I began to mop? wipe? hose down? saturate with spic and span? the kitchen floor.
• I paused and called Descartes to give him an update on where our family was for the day.
• Descartes came home in remarkable time considering that half of the streets in our town are flooded. He also picked up all of our recycling bins that had floated/been wind-gusted down the street.
• Descartes convinced Lucy to take a nap while Jake played quietly in his room so daddy could work and mommy could take a nap.
• I slept for 1 hour and 45 minutes..migraine gone.
• We fed the kids and did bath time..except Jake was in a pissy mood and decided to kick his sister so he went into the shower while Lucy took a bath.
• Jake refused to get out of the shower, and while I was dealing with him Lucy pooped in the tub. Fanfuckingtastic!
• Children eventually went to bed, tub got bleached and beers have been cracked.

Lucy has only hopped out of bed once since she went down an hour ago. Big girl bed will be purchased tomorrow.

Hope you had a nice day.

Why Can’t I get Any Help Around Here?

Just got a call from school.

Jake may have had a seizure..probably it was weird yawn (since he has been awake since 3 am), but they called and told me that he arched his back and his eyes rolled a little bit, so having not seen it myself.. the Doc will get a call.

in other news from school:

Each morning kids in Jake’s class have circle time. They walk to the board, select their name from the field of names and hand it to the teacher. Everyone cheers and says “Yay! You are at school!” or something like that. Jake does it too, and apparently chooses the correct name many times and is generally compliant and follows along and does it independently (his aide, Anna, stays in her seat).

This morning:
“Okay it’s Jake’s turn”
Jake gets up, walks halfway to the board (maybe a foot and a half). He stops and turns back around to his aide and SAYS
“Gubba,waging pho ewe ANNA!”.

the ‘Anna’ was VERY, very clear.

So they talked a bit about how Jake needs to be independent, and while Anna is his 1:1 aide she cannot do everything for him etc.

Jake walks to the board, picks out his name, hands it to teacher Janice.

The class cheered for him.

He turns, walks back to his chair but does not sit down. Instead he stands in front of Anna and says:

“Iba goma AGHHY art Nog Mutton” (no one could decipher this one) in an angry tone, stomped his foot, threw his arms up and down a few times then

sat down quietly.

The kid has a few opinions apparently.

Losing It

Just found myself on the tailgate of my Not-So-Mini Van crying.

On the tailgate of my Not-So-Mini Van crying in the Costco parking lot.

On the tailgate of my Not-So-Mini Van crying in the Costco parking lot so much that the Cart Guy comes over to see if I am okay.

On the tailgate of my Not-So-Mini Van crying in the Costco parking lot so much that the Cart Guy comes over to see if I am okay, and offers to go back into the store and get the raspberries that flew off of our cart after we paid for them and were racing for the door because Jake could not keep his crazy ass in the big part of the cart and Lucy was screaming to get out of the kiddie seat part.

We’re Going to the Zoo, zoo, zooo. How ’bout you?

Hurrah! I took both kids to the zoo today. Yeah don’t think I am quite so brave. I went with Squid and her girlie munchkins and one of Iz’s precious friends. The older girls helped a LOT with Lucy, and Jake was mostly entertained by the ramblings-on of all of us motor-mouths.

Jake went on the carousel without a seat belt, on an uppy-down horse with me only standing next to him. First time a grown up didn’t need to help him stay on. He held on with both hands and everything.

We really had a lovely time. Perfect weather. Well-mannered children. Not too crowded. Howler monkey SUPER LOUD, and no one lost any shoes. Stayed a perfect number of hours. Lucy did get mean and grabby with Mali at the end of the day, but she was just tired. They sat next to each other in a stroller all day long with no problem.

We said our good byes then took the Great Highway and Skyline home, watching the waves roll against the amazing California coastline….and I had a diet coke in the car with some ice left in it…perfect!

then we had to go to Comcast…which is sort of like saying we had to visit hell..and that story is so painful to tell right now that I simply cannot

highlights of Comcast visit:

• Jake screaming/whining/crying the entire time in line with 10 people in front of us.
• No one opening or holding the door for me in spite of having a wheelchair-screamy kid and a wriggly little girl in my arms…oh and a DVR. Seriously a guy walked in and let the door shut behind him without even looking. Does anyone have manners? I don’t want special treatment, I just want courtesy.
• All three of us crying in the car on the way home.
• Jake being so worn out that he sobbed himself to sleep on the floor of his room when we got home…at 4pm…he is still asleep in the clothes he wore to the zoo…with no dinner, no new diaper.

i have opened a bottle of red wine. please do not disturb the momma