Jake's Birthday

Isn't he a beautiful boy? I know he isn't smiling in this picture, but he is looking at the camera. He was so relaxed during the whole party. He just took it all in. Relaxed is good. No panic attacks, no dropping to the ground in anger or frustration. He sat nicely next to his Papa, drank his milkshake(s) and I think, had a very nice time. I was able to make a Celebration Chocolate Cake and have it taste fine in spite of its not wanting to rise very well. We have amazing friends with hilarious kids. I think it went off well. Everyone got fed and most people were able to escape with their kids **just** before they melted down.
__________________

It has been a hard month for me. September is always very hard. We normally vacation at the end of August, so we are generally unprepared for the first days of school, and all of the anticipation of "the perfect trip to Hawaii" or wherever is now replaced with the more solid memory of how difficult it is to travel with our children. Then there are new shoes, and a new bus schedule (and a new driver), the weather is funky, some days cool, the next day 90 degrees, and I am always wearing sandals in the rain and knee-high boots in the heat.

September brings the feeling that I have once again left so many projects undone from the summer, that I have failed my kids because I didn't do more...museum hopping, pool play, picnicking, beach sand sifting or camping.

And then Jake's birthday is upon me, and I have no plans. No plans because my son doesn't remind me three times daily for a month that his birthday is coming, as so many other children his age will do. So his day sneaks up on me and then it is here, and I am smacked in the face with the fact that seven years have gone by. SEVEN years and this is where we are. And believe me, we are in a great, great place filled with new development and better eye contact, and wonderful things. But I apparently continue to think, somewhere in my mind, that Jake will be growing out of his --Autism, CP, ADHD, panic disorder-- any day now. So there I am on September 24th, a week before his birthday trying to shove all of my expectations back into the bag and tie it up again, more tightly than before, because it is so unfair to Jake, and to me.

So I tried very hard this year, though it was still last minute, to do something for Jake, and I did figure out that it is better to do something small and manageable, knowing that Jake might enjoy himself. Much better idea than spending a gazillion dollars on something where we may not have success. We got the little banquet room attached to his favorite burger and fry joint and invited some of the people we care so much about...some of the people who seem to care so much about us.

It was fantastic, and noisy, and filled with french fries and milkshakes. And I have now baked the cupcakes for Jake's party at school tomorrow. And tonight I will turn the calendar so that a fresh October page shines upon our wall.

Happy Birthday Tiny Man.

CISWY...You Go First.

Don't forget to submit your story to Can I Sit With You? I would love to post some of the stories you have alluded to in your emails back to me.

Click here for the submission guidelines

Hey, Kids!
Do you remember how the other kids at school made your life hell? Don't you think that story needs to be told? Please?

The goal of Can I Sit With You is to share our schoolyard horror stories not only amongst ourselves, but also with the children who are experiencing this special form of social purgatory right now. We want them to know that even though what they're going through sucks, they're not alone.

(If your school social experience was heavenly, that's okay--we certainly wouldn't mind some success stories.)

Proceeds from Can I Sit With You will go directly to our local, fledgling, underfunded, desperately needed Special Education PTA, SEPTAR. To that end, we're going to compile the best selections from this blog into a book, which we will start selling in mid-November 2007.

Back Against The Wall

This morning when I dropped Jake off at school I discovered that Anna, his 1:1 was not there. She has a bunch of doctor's appointments. I am always worried when people have doctor's appointments. Just, in general, I sort of expect that bad things happen to good people. Aren't I just so positive? I know she is fine, but not having her greet us at the car makes me a little lost.. I can't imagine how it feels for Jake!

So I left Lucy in the car and walked Jake over to where the other children in his class wait. There is one student in a wheelchair who comes on a different bus, so the entire class waits a minute or two as he is unloaded. They sit against the wall, or stand against the wall, holding their backpacks and wiggling and trying to hold or not hold the hands of the child next to them.

Jake normally stands away from the other kids, with the adults, with the teacher and the other aides, where he holds Anna's hand and they wait this way for that last student. Today, with no Anna, I just walked Jake over to the wall, and he put his back against it. I asked him if he wanted to sit down...

"Yeah".

So I helped Jake sit down. He put his back against the wall and slid down the wall and sat there with his legs at a "normal" angle, and his back slouched, just slightly, like a teenager.

And I handed him his backpack, and he put his arm on it, and he stayed there. He wasn't sprawled out on the ground. He didn't jump up and run into the parking lot. He didn't whine or sag, or get anxious.

He stayed against the wall and sat with his peers (okay they are also SDC kids, but they are SDC kids who can follow directions).

And I kissed him on the head and told him I love him and he smiled and I walked away.

Whoa dewd.

I Won't Buy Hope

Is that wrong?

I am so tired of people taking advantage of parents with special needs kids, offering snake oils and therapies with no proven results, charging parents more and more money..

Selling hope. We have tried thousands of dollars worth of products. I am done.

I refuse to pay for hope. It will have to come from within.

Being in the Same Place

I've been thinking more about our Small Victory and how Descartes responded and I am just so thankful for our being in the same place.

We have not always been in the same place about Jake. I suppose it is better that we aren't always in the same pew so that one can pull the other out of despair should it take hold, as it is wont to do every so often.

Can I Sit With You?

A new adventure....please consider submitting one of your childhood tales, Squid and I are very excited about this.

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

Want to tell everyone how the other kids at school made your life hell? Please?

The goal of Can I Sit With You is to share schoolyard horror stories not only amongst ourselves, but also with the children who are experiencing this special form of social purgatory right now. We want them to know that even though what they're going through sucks, they're not alone.

Any proceeds from Can I Sit With You will go directly to our local, fledgling, underfunded, desperately needed Special Education PTA.

The best selections from this blog will be compiled into a book, which will start selling in mid-November 2007.

Just remember, by sending your stories to canisitwithyou@gmail.com, you are agreeing to the submission guidelines.

Another Small Victory Thursday Morning

Thursday morning
Jake is not going to school because he has bad butt.
A Hot Mama is registering him for Camp.. thank you thank you Mama B, Mother of 37,461 kids!

Jake and Lucy are running around the top floor of the house drinking sippy cups of milk.

Jake finishes his and drops it on the floor.

"Jake please put your cup on the counter."

and then

"If you want more milk, please give your cup to mom."

I pull the milk out of the *new* fridge.

Jake kicks the cup to me.
In the past I would have accepted this as his attempt to follow directions.

"If you want more milk you need to put your cup on the counter. You need to hand your cup to mom."

Jake picks up his cup and comes to the breakfast counter and lets the cup roll out of his hand towards me.
this is as close as Jake gets to following these kind of directions which require intimate touch

"Jake, if you want more milk you need to hand your cup to mom."

Jake picks up his cup, steps a foot towards me and puts the cup in my hand.

He put the cup in my hand.

Jake has never actually handed any one any thing ever.

He will drop it close by, he will kick it to your feet, he will nudge it towards you, but never in the hand.

and he did it. and i cried.. and I gave him his milk, and gave him a big hug and thanked him for following directions and being a good listener. He smiled and made happy noises and ran away (with his cup of milk!).

I went downstairs and woke up Descartes.

and to my great delight he was excited too, and knew exactly what I was talking about, which is, I suppose, a great testament to our marriage and our parenting that we are in the same place.. that we both knew how special this moment was.

Descartes came upstairs and gave Jake a big hug and told him that he was very proud of him and Jake leaned into Descartes and smiled.

September 20th, 2007

Jake followed directions.

Jake handed me the cup.

Small victories.

Actually, Plumbing IS hard.

I have a new dishwasher. I have a new refrigerator. Lucy does not have MRSA on her finger, it is only strep. Jake does not have strep, he only has a sinus infection. I do not have strep. Descartes did not even have a doctor's appointment. My life should be pretty much perfect.

Except Jake had diarrhea at school and I had to pick him up and wait, have I told you about the diarrhea thing? This one really has worked for me. I look at whatever situation is going on in my family.... and I say, "Well, does anyone have diarrhea?" and if that answer is no...then I know right then and there that it is not that bad..because apparently it could be worse because everything is worse with diarrhea don't you think? Now sometimes this does not work because the problem IS diarrhea..but you get my point.

So anywhooo I decided to fix the water at the kitchen sink issue we have had as of late.. for some crazy reason (the last plumber) the cold is hot and the hot is cold. So I went under the sink with a wrench (or seven) and fumbled around trying to fix it and discovered that, indeed I do have arthritis bad enough to not be able to do that.... and also, while I am rather handy, I am also a bit clumsy.

I dropped a giant wrench on the bridge of my nose. Same place where Jake broke it several years ago. I sat up from under the counter (actually without hitting my head on the way out), and sat there and sobbed on my kitchen floor.

"Why God, does everything have to be so hard all the time?"

and then it hit me.

Plumbing is hard. This is why there are plumbers who make good money, and why even very smart people hire them.

but more than that. I think somewhere along the line I think I had started to believe that because on most days, life with Jake is so very hard, that somehow the rest of my life should be easier.

The fact of the matter is:

the rest of the hard things in life might be just as hard for me as they are for other people, I just also have Jake.

and now you are thinking this chick is so dumb.

But really. I think I go around thinking that I know I can't solve Jake, fix him or any such thing; I am trying not to waste any more time on the 'why' of Jake. He is a mystery that I love and am trying to help him be an active part of his world.

...but every other thing on the planet? I should be able to fix those things because they all have answers. Everything else has a rational explanation, so it should be easy for me to fix or do every other challenging thing I encounter. I am smart enough. I have resource enough. I should be able to do it.. and it should be easy for me to do because there is an answer, in a book, on the web, in my head, from a friend...all solvable.

How crazy is that? No wonder I am so irritated with myself all the time.

I'm Lovin it

Did you know that McDonald's is a proud sponsor of Sesame Street?
Unlike several of my friends and many of my contemporaries, I do not hate McDonald's. I do not think they are responsible for childhood obesity in this country... most kids don't have jobs or cars, and they sure as hell don't walk anywhere, so if they are getting fat from MickeyD's it is because some one is taking them there and buying it for them. Everything in moderation and all will be well as far as I'm concerned..except crack, never crack.

So Friday night when Descartes was working late I had to go to the pharmacy to get Lucy a little amoxicillin (since she has some random red and tender area on her finger ...) so I fed the kids home made strata, a gift from Squid (thank you thank you!) and various other left-overs, bathed them, got them in jammies and placed them in the Not-so-Mini Van. Happy children, they watched a pre-recorded CD of Sesame Street (which opens with a McDonald's commercial...this is called foreshadowing).

After the pharmacy I decided I wanted ice cream. This doesn't happen to me very often, so I decided to listen to my body and search for drive through ice cream. Not really anything around except for McDonald's. Okay, so I go there, get the kids a vanilla milkshake and a small fry to share and I got a little sundae (which I could only eat four bites of).

I also purchased, for no known reason, two hot apple pies for a dollar. I cannot believe I am writing this. When I got home, those pies stayed in the bag, on the counter, uneaten over night, children went to sleep, Descartes and I discussed business plans and remodeling projects.

fast forward
the next morning, Descartes says "What is in that bag?" and I laugh and pull out one of the little red boxes with the Golden Arches on it. "Oh these are two apple pies for a dollar. I..."

and I am interrupted by little Lucy
who says very loudly with a little finger pointed so directly at the red box.
"..want McConalds!"

Descartes immediately tells me I am so busted. I almost started to cry, out of joy because my daughter can speak and point, and out of sadness and despair because am I seriously raising a junk-food kid?

Then I remembered that McConald's is a proud sponsor of Sesame Street..and she sees that show once a day every single day...and so Descartes gives me that one and agrees that Lucy has really only had McConald's two other times, and only on car trips to Tahoe.

jeesh.

I'm lovin' it.

Shiny, Bright and New

Didn't mean to but we bought a new refrigerator...and a new dishwasher today. We just went to Home Depot to get a wallboard T-square to make hanging drywall in the downstairs bathroom easier.. but we decided to peruse the appliances because after the Friday morning discovery that the Otter Pops were melty in the freezer..we knew we were going to need to buy a fridge very soon...

One thing always leads to another in my house. So after reading all of the rebate information, and doing way more math than any two adults should try to accomplish without: paper, a pen or sleep, and certainly more math than anyone should do with a stomach full of yummy siesta-inducing Mexican food, a little girl who is testing boundaries by shrieking every time she wants attention, and a very bored (but well behaved) son in a wheelchair...we figured out that if we chose a Maytag fridge over the KitchenAid or GE profile, we would be able to get a dishwasher too..and still have it be about $500.00 less than any other fridge I had seen that would fit the narrow space we have for a refrigerator. sooooooooo... We took the floor model of the fridge, saving $800.00 (but in return had to do self-delivery) , and the dishwasher will arrive on Wednesday and be installed so I do not need to deal with that...

Deal of the year for us. Descartes took the Not-so-Mini Van back to HD with our trailer attached (yes, we own a trailer..a rear end of a pick up truck..how's that for white trash?). He was gone for nearly two hours, maybe more... and when he returned there was a fridge standing up in a pick-up bed, parked behind my house, looking like the Westin Bonaventure Hotel on Los Angeles.

It was massive, and the longer it sat there, the heavier it got ( I swear!) and truly, the hotter it got until I contemplated wearing oven mitts as we maneuvered it off the back of the trailer, down a makeshift ramp and onto solid ground.

We figured it out, and it is safely plugged in and filled with our savories and sweets, but not before we: nearly took out a rain gutter, an overhead light fixture and the screen door, and not before removing both doors of the appliance.

It was really, really not easy, but like most things in our little life, when Descartes and I work together, we are nearly unstoppable. www.canisitwithyou.blogspot.com