Love Notes

New Story posted on Can I Sit With You? Love Notes by Tanya Foubert.

One girl's foray into shop class, and the inevitable gender bias that greets her.

Turning Corners in a Round House

last night as Jake settles into bed:

He is kicking the bed frame which then bangs against the wall and shudders the house, making it sound like he is thrashing about when really he is criss-crossing his legs, practicing really a new skill of making one side of his body cooperate with the other. His toes cling to the bed post as he creeps them up and down lying on his back looking at the very dimmed light fixture. I crawl in next to him for a moment, because I miss him, this calm him, because I want relationship with my own son who won't can't make eye contact with me. I want to at least feel close to him, and since he isn't flailing about I think I can. So I lay on the twin bed. He is nearly as long as I am, but he is all bones and muscle and joints. Even his frame is hard to hold because he is angular against my motherly roundness. I hug him and he rolls into me, his face next to mine on the pillow.

me: "Jake, I love you so much. I'm so glad you're feeling better."
Jake: "Mmph" said with a smile
me: "Jake I love you. Can you tell mommy 'I love you?' Can you say 'love'?"
Jake: clearly "Love."


He is happy this morning, lots of happy sounds and running up and down the stairs , jumping and smiling at the sight of a fresh cup of milk or more cheerios. Maybe he is back from where ever he goes when he is so upset in his own body. He's back and he may have learned more new skills again. It was hard this time. Physical injuries and a baby sister who felt abandoned. Descartes and I only fought one time, and only for a moment, so we are better at this, but we're still learning.

There's no rulebook for our child, or this life. There's only slowly moving forward, hoping that the next time we come more prepared, with a more fortified army of caretakers, medications and resources. Because no matter how far we've come, no matter that this morning it feels like it is over, I know another episode is coming; my calendar says next week.

Fall Break Week One Update

No California Academy of Sciences today.. my great plan to entertain both of my children. Today is "Free Wednesday", and while I think that is just fantastic for everyone else, those kind of crowds do not make navigation easy, so we will skip that.

Jake is feeling a little bit better in terms of episode...I think... He was able to lunch yesterday at a restaurant. Sage met us at the local Indian buffet and he was well behaved and was even following some directions. Jake and I "rolled" around the shopping area from 10:30-2pm waiting for our car to get new run flat tires, then new front and rear brakes... ouch to the wallet. Run fat tires are a great idea, but they cost at least twice as much as most tires and last half as long.

Anywhoo, Jake went into his wheelchair happily... he has a cold so he was a bit lethargic, which after the past however many weeks of spazzing and throwing, I'll admit I was a little bit okay seeing. We went to a discount store where he picked out his costume.. a skeleton. He laughed when I told him it was perfect because he was skin and bones already.

I don't think Lucy is going to be thrilled with Jake's choice of costume. She is prety convinced that she is going to be a penguin, Jake is going to be a puppy, Daddy is going to be a pumpkin and I am going to be a bee. Just ask her. SHe's been saying this for at least a month now. How quirky she is!

Wish us luck we are off to Lucy's swimming lesson. Jake hates it there... lovely.

*************************

Swimming update... Jake did very well at the enclosed noisy swim school that Lucy loves so much. Half way through the lesson my dear Squid came to entertain Jake so I could help the teacher Faith, remind Lucy to use "big arms". Jake even gave Squid a little low five in the car and smiled when she asked whether he was going to come over to her house soon. Yay for friends! Yay for Jake feeling better! Yay for giant coloring book purchased for Lucy at Costco which may keep her entertained for the next 15 minutes!

Will YOU get a tax cut under the Obama Tax Plan?

Just Another Monday

Social worker comes in two hours.

Jake has a nasty cold

Lucy got up too early and is so cranky. 

Descartes had an early meeting so he is long gone.

Lucy has just asked for a baby sister.

*****************************

Social worker meeting went well. Looks like it might be possible to get a new "trail-friendly" wheelchair for Jake, which would open up a lot more trails for our family. Wouldn't that be terrific? 

Trees and Lopsided Cakes

I tried to have a little normal this morning by baking a cake for my dear friend Squid. It is her birthday tomorrow.. so hop on over and wish her a good one. 

Jake went cuckoo again this morning...just so upset so Descartes packed him into the car as I was frosting the cake with my favorite terribly sweet seven minute frosting. I finished the cake and packed a quick picnic lunch.

Then Lucy and I got dressed and Descartes picked us up and 

off we drove down the road 

towards the coast. Our destination: Portola Redwood State Park. It was a little risky given that Jake was so upset, but  driving on windy roads in the car, a change of venue and trees generally are all things which make Jake happy.

 We chose a path that looked somewhat wheelchair-able.. Ha HA! Half way in we left the chair at the side of the trail and Jake

 walked holding Daddy's hand. He did very well.

We told Jake that if he got tired he could let us know and we would

 just turn around and head back. We walked another 500 yards and he turned Descartes around by the hand and headed back down the trail. He was calm and happy the whole time on the trail. Lucy loved "camping". We chose another trail (which was really a service access road, and therefore paved) and walked another mile or so up and down hills with Jake in his wheelchair. Lucy wanted to keep going down the road, but soon she was walking with her eyes closed she was so tired. We packed it up and headed home. 

Happy Jake played in our backyard, Descartes worked (of course), and I finished up the cake. Lucy slept in the car, and it's a good thing she rested because we went over to Squid's house and Lucy and Mali played like crazy wild creatures, Descartes and I got to talk with grownups (athough Descartes did quite a bit of active parenting) and Jake got to play in the new rock garden that I am fairly certain was 'planted' exclusively for my child. My children are always happy at the Rosenbergs. Note the picture of Lucy here sporting a hairstyle a la Iz and 1/2 bottle of mousse..and face paint. We thought she looked like the joker.

We had a great time, and apparently all of the change was good for Jake who managed to NOT cry at all from 5:30-8:30 today. Sorry Squid we will be dropping Jake off every day at 5:15pm. 

Both children came home and went to bed within 10 minutes of going into their rooms. I just went to check on Jake and he sounds a bit sniffly, but it could be that he played in Squid's backyard for 4 hours in 56 degree weather. 

I am calling it a successful day. 

Out on the Town

Descartes has just taken Jake out in the car again. Jake was screaming and crying. Throwing himself around on the kitchen floor. I gave him 1 mg of Atavin at 3:45 as recommended by his psychiatrist. It has done nothing to relieve whatever "this" is. 

Every day 5:30-8:45 Jake screams and cries. Have you heard of sundowning? It is a term most often used in describing symptoms which occur in those afflicted with Alzheimer's. Maybe that's what is going on for Jake. 

I still managed to clean out the toys upstairs and get a flank steak marinated which Descartes grilled when he got home. Had I actually gotten a hold of Descartes at 4:15pm when I tried texting him I would have begged him to come home because Jake was so out of control. Then I made the kids dinner and half way through, Jake started smiling and laughing. Then he played in the back yard happily... and then he lost it again.

I am so tired. Emotionally drained really. and poor Lucy..all potty training has stopped. She is telling me she is a baby. 

The only way things feel sane is to have someone come to help us every day. The fact is we just cannot afford to have that much help. Yes we get respite hours, but the reimbursement rate does not cover what an aide actually costs.  We never have help over the weekend Friday through Sunday we are on our own, because **really** shouldn't we be able to take care of our own children? 

I just want my arm to be healed a little more before we start cutting hours. I know this episode won't last forever, but it better end before it breaks the bank.

Upside Down

Jake was a happy kid this morning, and then I found myself typing this entry into my phone in the school parking lot. Windows are rolled up and I can still hear him screaming as he thrashes his way down the hall. 

He started crying two blocks before we even got to school. Jake has always loved school,and now he cries, and cries, and cries...with tears as we near the intersection that dictates that there is no other end point beside school. 

I sent a scathing letter to the district yesterday in regards to Jake's 1:1 aide. She is not a bad person at all. she just isn't cut out to be an aide in a Special Ed. class. or at least not Jake's aide. Not many of us are. I sure as hell don't feel like I have the right skills and energy to do this job on many days.. but I didn't CHOOSE this as a profession. At her young age I am hoping she can find the right career.somewhere else. We should, if all goes well for us, have a new aide when we return from fall break in two weeks.

*******************************

I forgot Jake's bus vest and had to go back to school... and his nose is running clear, so that means it is allergy time again.. Lovely. As if we weren't throwing a whole bunch of drugs in him already this week, let's add Clairitin. 

********************************

Jake arrived home (early day) happy happy kid. SO happy that I asked him if he wanted to go get ice cream for a date. Even with my recovering arm, I was thinking that he looked so happy it just might work. Sure enough he said "eye-ce creammm" so yeah.. Jake got ice cream. Three scoops of cookies and cream with chocolate sauce and marshmallow topping. And he sat nicely and even looked at the employee who said she was glad to seem him after all these weeks.

*******************************

I still gave Jake an Atavin. I don't yet trust that at 5:30 he will be this happy child, and I cannot have any more bloodshed in this house for at least another week.  

Time for Sleep

and I know this because:

1. my children are both actually sleeping in beds and no one is bleeding.
2. my husband has gone to bed
3. my glass of wine is empty
4. my eyes hurt

and the number one reason I need to go to bed...

I just started thinking about the possibility of training for marathons or better yet triathlons.

ha HA! this friggin LIFE is a more than a triathlon.  

we are on day forever of whatever is going on with Jake. We have been trying to find the right combination of drugs for him. Listening to Sage's advice I am trying to track everything on a spreadsheet to see if there is a "good" combination in this mess somewhere. 

It's been a lot like when Jake was little and had that long episode where he didn't sleep for over a month.. only now he is 8 and big, and it is harder to keep him safe.

He seems to be coming out of it...slowly. 

This morning he said "Mom" and at school yesterday he said "Teacher". 

always looking for those small victories.

Yearbook Yourself

Lazy leftover drafts filling in for NaBloPoMo


****************************

Yearbook Yourself... genius time sink. I had so much fun!

It didn't quite work in the first photo because my modern day photo had bangs
me in 1958:



1960 worked a little better


and 1964


and 1966


and 1968


and 1970


and 1972




and 1976



and I'm pretty sure this was me in 1990


and 1992 no no no.. the soft focus touch





Here I am in 1994 love that perm:


And 1996: