30 September, 2007
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.
Click here for the submission guidelines
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.
27 September, 2007
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...
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.
25 September, 2007
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.
23 September, 2007
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.
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 email@example.com, you are agreeing to the submission guidelines.
21 September, 2007
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."
"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.
19 September, 2007
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.
16 September, 2007
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.
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.
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.
I'm lovin' it.
15 September, 2007
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
13 September, 2007
We used to go to Montana every year with them.. and before there was a "them" and an "us" I went with Dognobble and groups of friends and we helped build the cabin, plant trees and watch the stars.
We used to go to their house and stay up all night long drinking Lime Rickey-Mickey's, good Scotch and bubbly water, and wine, and one time tequila when we had run out of everything else. All while our child slept in a pack and play in the guest room. We used to take walks along all of the beautiful paths in their town, and spent several Halloweens touring their safe flat city.
We actually talk when we are with Dognobble and DB. They are much more liberal than we are.. or at least they think they are, since we hold our hand pretty close, but they are damn smart and so open to discussion that by the end of each evening at least one of us seriously considers taking on a new opinion on any given subject. After one night I went and bought a book on world religion and another documenting the ongoing saga of "Peace" in the Middle East. Not exactly easy conversations.
At some point it got too hard. They have always been so warm and welcoming with Jake. Loving and asking all the right questions and saying all the right things every time, but it was too hard for me and Descartes. Too hard to take Jake and have him flip out at their house because he had such crazy sleep problems, maybe too hard to have Jake not be able to play with their precious and oh-so-smart and physically capable son Teton. Their house is on the way to my sister's house, and whereas it used to be that Dognobble's home was our final destination, we continue on to Tahoe now. They had a second child, also perfect and wonderful, and still we managed to see them, managed to get to Montana, and now all of a sudden, or not suddenly at all, Teton can barely remember who we are, and doesn't remember meeting Lucy at all.
Dognobble is very important to me; they both are, but Dognobble occupies a special place in my heart. Yes, I did date him in college, but it was a very brief relationship that turned into a much better and deeper friendship...mostly, he is important because he knew me when I was all hope. When I could still be anything in the world I wanted to be, and I was going to be. He knew me when I went dancing at least two, if not three nights out of seven, and still managed to work 80 hours a week, and still have more energy to make cakes for friend's birthdays and drop in on a recording session or two, just to hear people lay down amazing music.
I am pouring myself a glass of wine and toasting Dognobble. Toasting all of his successes, and his beautiful wife, and his amazing children...and his ability to help me remember some of who I was when it is hard for me to see that bright-eyed girl in the mirror. Thanks Dognobble, and Happy Birthday dear friend.
What I want to know is.. how do you admonish a kid for being so damn rude while she is also hurt. And poor Jake was seriously smirking at his sister's demise since she was being a pain in the rear.
She is now napping and Jake is watching Curious George.
So I am going to surf the tubes
12 September, 2007
I hate them to the depth and breadth and height
My arms can reach when wiping noses in the night
For their never-ending and snot all over the place
I hate them that they ruin several days
Most quiet need, all day, then coughing in the night.
I hate how noses run so freely, as I strive to stay upright.
I hate them purely, as school turns us away.
I hate them with a passion put to use
In my old griefs, having nearly lost all faith.
I hate them with a hate and so it seems I lose
All of my patience, --- I hate colds with the breath,
Smiles, tears, of all my life! --- and, if God choose,
I shall but hate them more than death.
09 September, 2007
I never expected that I would be in a 4X4, dodging trees and crawling over rocks. I always saw myself doing those things with a pack on my back and boots on my feet. I think I used to look down on people who "went 4x4ing", as if they were lazy or something. Once again I realize that you just never know why people do the things they do, just when you begin to pass judgement, well, life with Jake has changed us in so many ways. We still go camping, but hiking on rocks and boulders up and down steep hillsides is not happening (maybe it wouldn't anyway with a near 7 year old?) and now I find that I am one of them. and by the way it is really fun and requires a crazy amount of mind agility to figure out angles and such.
Jake LOVES to go off road. He loves the jostle and bump of the car....he loves mommy shrieking if the car seems just about to roll over, and he thinks it damn funny if mommy drives the LandCruiser... especially through dry creek beds and such. We hadn't been in awhile, not as a family, since before Lucy was born. It was nice to discover that it is still one of Jake's favorite, most giggly things to do on Earth.
Lucy was a little concerned when we started, maybe because she was jostled abruptly from her nap. She had a decidedly better time after we put her dolly on the dashboard, and said "Whooooaaaa there goes Dolly" whenever we went over a bump and Dolly flew to the floor.
The lake we circled was very low. The snowpack was only 40-55% of average last year, so hopefully it will be a flurry filled winter this year.
It was chilly this morning on the deck at my sister's house.. warm coffee, chilled mountain air and great conversation..these are a few of my favorite things
...and happy kids. I love happy kids.
06 September, 2007
- provide Lucy opportunities that are not simply "tag along to what my special-needs brother can do"
- do things with both of my children at the same time outside of the house.
- actually ask Jake what he wants to do by giving him choices, instead of guessing (mostly correctly) and deciding for him.
We were invited to go swimming at Squid's house.. lucky us, and I had all sorts of grand plans to take Jake and Lucy and Jake's aide Valerie and head to Squid's house, but in keeping with my above stated efforts, I took a "Yes" "No" card we have taped to the fridge and actually asked
Jake: "Do you want to go swimming?"
He hits the "No" side of the card, but it looks like he may be hitting something (a drum?) next to it, so I remove the object and ask again.
He looks at "No".
I ask him again with the card in front of my face. It is see-through so I can see where his eye gaze heads..."No".
So I ask the same if he still wants to go to Ms. Squid's house and play on the trampoline or something else "No". and a little bit of a verbal "nah".
Then, to double check, I ask "Do you want to stay home?"
I get the eye gaze and a tap on the card in the "yes" corner.
So I talk to him about how that is totally fine, I understand because he is tired etc.
and I pack up Lucy and we say goodbye and we go for a fun swimming session with Squid and her three guppies and another friend and her guppy joins (can every one's kid swim but mine? working on it....)
When we get home I discover that the moment we shut the door behind us, Jake ran to the door, threw himself on the ground and whined/yelled. Valerie explained to him that he had said he didn't want to go and that we would be back..
Apparently he sulked for quite awhile.
Did he think I wasn't going to go if he didn't want to?
When I asked him that question, as I hugged him on the couch when we got home...
he looked me right in the eye, then buried his head into the couch.
What goes on in his head?
As Sage says "Hard to tell jennyalice. It's hard to tell." www.canisitwithyou.blogspot.com
05 September, 2007
04 September, 2007
forgot to add... when I told Descartes he said "escuela"? Yeah, 'cause baby knows more Spanish than daddy...
03 September, 2007
Well, as it turned out, she thought I was okay too. A mutual-admiration society of sorts. She said she thought I was nice all through school, when other girls turned caddy she says I didn't, and she had these very strong memories of me being a kind person, and even defending her when other girls were speaking harshly behind her back (while she was pretending to be asleep at a slumber party).
It was truly a remarkable email for me to receive, because I do not do a very good job of remembering anything good I ever do. When asked recently if I hold a grudge I replied no.. My husband said, "Well, but you do remember every single thing anyone ever says". and I think that is true. But I don't hold a grudge, instead I just remember every mean or unkind, or misplaced word which has ever been spoken to me; every criticism, harshness or otherwise. Sadly, most of the time I also dissect the statement so carefully that it goes beyond a phrase and becomes a diatribe or dissertation in my head. It's not a 'grudge'.. I just remember being 'smudged'.
What was so interesting to me is that the here was this person who spent time near me for 12+ years thinking I was a certain type of person, and I was there too, all that time, thinking I was someone else. I was trying so hard to be the kind of person she describes, but never felt like I was. How does that happen? In this case it is much better to use her perceptions to define my young self. I like the idea that I was kind, and gracious and good hearted etc.
I think, as my Momster says "We become the stories we tell ourselves about ourselves". So what stories am I feeding myself now? What poet's lines? When one of my dearest friends tells me one night in January 2004 after many, many, many drinks, "You have a mean heart"-- is that the perception I had been wearing? do I still wear it? I spend every day trying to be anything but that girl.
I try to tell myself that I am a woman who is starting to have a grip on who she is. I want to think that I am a devoted wife, a good mother, and an aspiring writer. I'd like to think that I am witty and that I am a critical thinker who still has compassion and common sense. I tell myself that I love to go camping, I regularly compost and that this body I live in isn't so bad after all.
These are the stories I am telling myself these days.
02 September, 2007
Note from Jennyalice:
Now we can't even hold our babies the right way... interesting stuff.
To see this story with its related links on the Guardian Unlimited site, go to http://www.guardian.co.uk
Cradling linked to depression in new mothers
Lucy Ward, social affairs correspondent
Wednesday August 29 2007
It is one of the most natural actions in the world - a mother scoops up a baby to hold and comfort it in her arms. But, according to new research, cradling could help identify stress that may lead to postnatal depression.
New mothers who cradle their infants on the right side of their body may be displaying signs of "extreme stress". The findings build on previous research showing that most mothers prefer to hold their baby to their left, regardless of whether they are left- or right-handed.
The study suggests there is a correlation between the minority who hold a baby on the right and a greater likelihood that they are experiencing stress beyond the levels natural in new parents.
The researchers say the finding could provide a new way to tackle postnatal depression, suffered by at least one in 10 new mothers. They conclude: "Studying non-verbal cues such as baby-cradling could help doctors and health visitors identify which mothers need extra professional support before it gets too late."
Depression in mothers can have a detrimental effect on the baby's mental development. The study, published in the online edition of the Journal of Child Psychology and Psychiatry, was based on 79 new mothers and their babies.
Mothers in their own homes were asked to cradle their babies, an action not linked to left- or right-handedness. They were also quizzed on their mental state.
The study found that of the mothers who expressed no stress or depression only 14% preferred to hold their babies to the right. But 32% of stressed mothers showed a right-sided bias.
Lead author Nadja Reissland, a senior lecturer with Durham University's department of psychology, said early detection of stress was vital. "The way they [new mothers] interact with their child is usually the best indicator of their inner mental state," she said. Gillian Fletcher, president of the National Childbirth Trust, said the apparent link between cradling side and mental state was interesting, but she would view it with caution in terms of predicting depression.
Copyright Guardian News and Media Limited
01 September, 2007