If you give a mouse a cookie...

Meme me, baby!

2008-08-18T10:54:13Z

In 2003 the Big Read (a BBC program) did a survey to see what the most popular books were. Here is the top 100 and this meme involves highlighting the books you've read from this list. Underline the ones you especially enjoyed.

1 Pride and Prejudice - Jane Austen
2 The Lord of the Rings - JRR Tolkien
3 Jane Eyre - Charlotte Bronte
4 Harry Potter series - JK Rowling
5 To Kill a Mockingbird - Harper Lee
6 The Bible
7 Wuthering Heights - Emily Bronte
8 Nineteen Eighty Four - George Orwell
9 His Dark Materials - Philip Pullman
10 Great Expectations -- Charles Dickens
11 Little Women - Louisa M Alcott -
12 Tess of the D'Urbervilles - Thomas Hardy
13 Catch 22 - Joseph Heller
14 Complete Works of Shakespeare
15 Rebecca - Daphne Du Maurier
16 The Hobbit -- JR Tolkien
17 Birdsong - Sebastian Faulks
18 Catcher in the Rye - JD Salinger
19 The Time Traveller's Wife - Audrey Niffenegger (loved it!)
20 Middlemarch - George Eliot
21 Gone With The Wind - Margaret Mitchell
22 The Great Gatsby - F Scott Fitzgerald
23 Bleak House - Charles Dickens
24 War and Peace - Leo Tolstoy
25 The Hitch Hiker's Guide to the Galaxy - Douglas Adams
26 Brideshead Revisited - Evelyn Waugh
27 Crime and Punishment - Fyodor Dostoyevsky
28 Grapes of Wrath - John Steinbeck (Love Steinbeck)
29 Alice in Wonderland - Lewis Carroll
30 The Wind in the Willows - Kenneth Grahame
31 Anna Karenina - Leo Tolstoy
32 David Copperfield - Charles Dickens
33 Chronicles of Narnia - CS Lewis
34 Emma - Jane Austen
35 Persuasion - Jane Austen
35 The Lion, The Witch, and The Wardrobe -- C.S. Lewis
37 The Kite Runner - Khaled Hosseini
38 Captain Corelli's Mandolin - Louis De Bernieres
39 Memoirs of a Geisha - Arthur Golden
40 Winnie the Pooh - AA Milne
41 Animal Farm -- George Orwell
42 The Da Vinci Code - Dan Brown
43 One Hundred Years of Solitude - Gabriel Garcia Marquez (No, wait, I lived in Sweden for 7 years, does that count?)
44 A Prayer for Owen Meaney - John Irving
45 The Woman in White - Wilkie Collins
46 Anne of Green Gables - LM Montgomery
47 Far From The Madding Crowd - Thomas Hardy
48 The Handmaid's Tale - Margaret Atwood
49 Lord of the Flies - William Golding
50 Atonement - Ian McEwan
51 Life of Pi - Yann Martel
52 Dune -- Frank Herbert
53 Cold Comfort Farm - Stella Gibbons
54 Sense and sensibility -- Jane Austen
55 A Suitable Boy - Vikram Seth
56 The Shadow of the Wind - Carlos Ruiz Zafon
57 A Tale Of Two Cities - Charles Dickens
58 Brave New World - Aldous Huxley
59 The Curious Incident of the Dog in the Night-time - Mark Haddon
60 Love In The Time Of Cholera - Gabriel Garcia Marquez
61 Of Mice and Men -- John Steinbeck
62 Lolita - Vladimir Nabokov
63 The Secret History - Donna Tartt
64 The Lovely Bones - Alice Sebold
65 Count of Monte Cristo - Alexandre Dumas
66 On The Road - Jack Kerouac
67 Jude the Obscure - Thomas Hardy
68 Bridget Jones' Diary - Helen Fielding
69 Midnight's Children - Salman Rushdie
70 Moby Dick - Herman Melville
71 Oliver Twist - Charles Dickens
72 Dracula - Bram Stoker
73 The Secret Garden - Frances Hodgson Burnett
74 Notes From A Small Island - Bill Bryson
75 Ulysses - James Joyce (bits of)
76 The Bell Jar - Sylvia Plath
77 Swallows and Amazons - Arthur Ransome
78 Germinal - Emile Zola
79 Vanity Fair - William Makepeace Thackeray
80 Possession - AS Byatt
81 A Christmas Carol - Charles Dickens
82 Cloud Atlas - David Mitchell
83 The Color Purple - Alice Walker
84 The Remains of the Day - Kazuo Ishiguro
85 Madame Bovary - Gustave Flaubert
86 A Fine Balance - Rohinton Mistry
87 Charlotte's Web - EB White
88 The Five People You Meet In Heaven - Mitch Albom
89 Adventures of Sherlock Holmes - Sir Arthur Conan Doyle
90 The Faraway Tree Collection - Enid Blyton
91 Heart of Darkness - Joseph Conrad
92 The Little Prince - Antoine De Saint-Exupery
93 The Wasp Factory - Iain Banks
94 Watership Down - Richard Adams
95 A Confederacy of Dunces - John Kennedy Toole
96 A Town Like Alice - Nevil Shute
97 The Three Musketeers - Alexandre Dumas
98 Hamlet - William Shakespeare
99 Charlie and the Chocolate Factory - Roald Dahl
100 Les Miserables - Victor Hugo

The Famous Oreo Video

2007-08-06T10:10:09Z

This video is great!

More than the sum of my parts!

2007-08-06T10:07:10Z

I found this interesting since, as a single mom, I play the male and female parts all the time. Apparently I got 99% on both male and female levels of scoring.

Your Score: Androgynous

You scored 60 masculinity and 63 femininity!

You scored high on both masculinity and femininity. You have a strong personality exhibiting characteristics of both traditional sex roles.

Link: The Bem Sex Role Inventory Test written by weirdscience on OkCupid Free Online Dating, home of the The Dating Persona Test

I'm baaaaaaack

2006-12-22T02:53:52Z

Okay, folks, it's been a dog's age since I posted. Here's the update. My father passed in August. My sisters, revisiting the "let's be abusive to Lisa and not talk about it" theme of decades past, ganged up on me late the night before the funeral and told me exactly what they thought of me, in great and loving and somewhat psychotic detail. I made the life liberating realization that perhaps these folks don't have my best interests in mind, and have had little to no contact with them since the funeral. And my life has, honestly, been much better for it. Deeply, cleanly, better for it.

Sure, there were times when they and my mom pressured me to just forget what happened, (and all the times it has happened), and just come back, and I made it clear that it was simply not okay for everyone to just not mention what had happened and make nice. One sister swore to my mom that she had apologized to me, and she never even brought any of it up with me. My therapist said that family systems like to perpetuate themselves, and man, ain't that the truth!

Nope, no thanks.

One sister has actually, impressively, approached me about talking about everything that has happened, and I'm just sleeping on that till after Christmas. After getting a taste of a sister-free, guilt-free life, it's hard to think about going back. I only really consider it for Jacob's sake. I used to feel I "had" to connect with them, but truth is, no one is ever obligated to enter back into an abusive relationship.

So, what else is new?

The clinic is coming along in fits and starts. I have an office manager who kicks my ass for an hour or two a week, and that keeps me working towards getting the office online with billing software and such.

Jacob is coming along beautifully. You would not recognize this boy. I think I'll do a separate blog about him. To bed with me now...

My Xmas Stocking

2006-12-22T02:45:43Z

Xmas Stocking

leave a gift for chirolisa

get your stocking

A little good news at last

2006-05-04T13:19:38Z

After the trials and tribulations.... (to be descibed in a future entry...)

So I'm in Philadelphia. I rented a car in Washington, DC. I need to end up in Boston. I have not bought a ticket home yet.

Sounds easy, right? No fox, goose, grain scenario. Return the car in Philly and fly up to Boston. Or better yet, drive up to Boston, return the car there.

Called Hertz. It would add a minimum of $350-400 to my car rental fee, because it would change it from a local rental to a different city drop off rental. From a weekly rate of abou $21 a day, to $65+ a day. Yeesh.

So I thought I would drive four hours (without traffic) to Washington DC, drop the car off, and take a $145 flight home. Total investment? $200 for the car, $145 for the ticket home. Four hours driving, one hour waiting, and two hours flying, and I would have to leave Philadelphia by 10.30am. Then I couldn't drive my mom home from the hospital. My local sister would have to do it, and the whole idea of being here was about making it easier for her.

Then I remembered! When I rented the car in Washington, DC, the fellow who rented it to me had a big wrist brace on. We got to talking and I offered to work on it. He was so grateful, he upgraded me to a sportscar with a sunroof with only 500 miles on it, and told me to contact him if I needed anything. So I called him this morning. After five minutes on the computer, he comes back with this: an additional $50 to drop the car in Boston. Apparently it was gonna cost even more than they initially had said, like $800 total! So the guy made up a rate for me!!! I didn't know they could do that! So net additional investment? $50 for the car, nothing for the plane as I'm not flying, and 6.5 hours of driving. I can leave when I want, as the car is technically due tomorrow morning. I can drive my mom home from the hospital, and helped my sister clean for an hour this morning (they are having construction in the house). I feel so glad, it was just the boost I needed.

Oh, and, of course, big picture, I get to see Jacob by tonight or tomorrow. YAY!

wheeee!

2006-04-20T17:29:47Z

We have been travelling in CA this week!

Two days in Berkeley, staying with Samantha and Karen and their assorted animals. Jacob loved meeting all the kitties. And what a lovely couple. It was great to catch up a little.

Then two plus days in Modesto, staying with my friend Ally's parents and joining their whole family for Easter. What an easy, lovely, wonderful time! Ally's parents, Bette and John, are a great couple. They are so easy with each other, very loving, so full of humor and so empty of judgements. It was just fantastic. I caught up on sleep, too.

When Lukas and Jacob saw each other, it was almost like they had never parted 3 years ago. There was running, laughing, chasing, playing. It was totally a kodak moment, but we stood there, transfixed, watching it unfold.

It's been a real treat to see Ally and Pete again. They have two kids, Lukas and Linnea, and it's been the gruesome threesome, with nonstop play, laughing, squabbling. It's basically been great, though I am sure that Jacob is clear that he does not, afterall, want a small sibling. The closeness between Lukas and Linnea is really touching to watch. Just beautiful. Yeah, fighting one moment, but also so obviously connected to each other. Now that's good parenting! And seeing how Pete and Ally handle day to day life, which is something you see when folks are kind enough to open their home to you for a week straight, well, it's good to see a good relationship to model. They're just so obviously so fond of each other, after two kids and moves and daily bumps in the road, and everything else. It's very very good to see.

Ally has taught me the horrid card game of Spite and Malice (S&M) and it's a late night thing now. Fun to sit and play cards and talk and talk. I've missed taking the time for that. My solitary existance is quiet, but solitary at home. Gotta do something about that.

Jacob's padding over now. Gotta run.

Quick update

2006-04-09T04:50:20Z

My father came through the first round of chemo pretty well. The anti nausea drugs are pretty damn good at this point, apparently. Except for some extreme constipation, it's been uneventful. What a load off my mind! Everyone is relieved and my dad turned 79 two days ago.

This week I took on my right to vent on the webpage I frequent. It's called Lost in Sweden, www.lostinsweden.com, which is a spinoff of Amerikanska. Both are websites for english speakers moving to, living in, or, I guess, having moved from Sweden. It was a real savior while I was there. Richard has been lurking there since the divorce, which is pretty creepy, since it's not really his crowd and it was a place I went for support. This past fall I was trying to schedule the christmas visit to Sweden a few weeks early so I could attend the funeral for the teenaged son of a friend of mine on the site, and he wouldn't budge the date. I vented my frustration on LIS (lost in sweden) and really received a strong reaction from the woman whose son had died, asking not to air personal conflicts like that on LIS. It was frustrating, but I honored her wishes given what she'd just had to deal with. This past week I finally opened my mouth again. There was a discussion about child support, and I vented my frustrations with my ex's process around this. This time, while there were a few protests, I felt the support of my friends around me. The whole thing was complicated by my ex's tendency to fib, to make himself out as father of the year, a revisionist history I cannot abide. It felt good to finally call him on stuff, and to have friends rally round. Oh, yeah, and to have my reputation points go up nearly 60 points in one day.

Here's a copy of the private message I sent to one of the moderators after. It says it all:

Dear __________,

I'm glad it's a new day and that things have calmed down.

I'm glad I didn't break forum rules and that Tidey's surprising and revealing post got to stay up.

Most of all, I'm glad that for the first time in more than a year, (or ever, if I really think about it) Richard has called his son two days in a row. Unprecedented.

There's something to be said for public accountability. Apparently Jacob and I were not enough to make him step up and reach out to his son, but in front of you guys, community, he's in action. I was talking with my mom about it and likened it to how someone would be accountable in within a congregation or a small town.

We're on new ground here, in the big picture as online communities find their feet and grow with both stumbles and grace. And in LIS, as two members (and ex's) deal with their differences on and off the forum while both remaining in community. I'm sure there will be other similar situations in the long run, and I'm glad that the situation is being explored by cool heads from both sides of the issue among the moderators. By nature, any community will eventually have conflict. It's how we deal with it when it happens that shows what we're made of.

Hugs
Lisa

The phenomenon of online communities is so foreign to my family and the bulk of my friends. If I had not moved to Sweden, I think it would not seem such a second nature idea. But this eclectic group of people are bound by only the common ground of being immigrants to Sweden. Among them are folks who may never have said "boo" to each other in other situations. I know that was the case for me!

Lastly, I spent 10 hours today at a fantastic chiro seminar, then tonight at a philosophy night. I am on fire! It's amazing! More to follow. Good night (1am!)

Poison, to go!

2006-04-04T02:16:32Z

My father had his first dose of chemotherapy today. Partway through he had hives and a swelling reaction. My mom had a terrifying run through the halls yelling for a doctor. I can't even imagine. Personally, I think the hives was a healthy immune reaction, something in the body yelling, "Hey! What's with the poison? What the fuck!?!?!?" in the only way the body knows how. It is poison. That weirds me out.

You see, it comes down to this. With no chemo, the lymphoma most likely would have started up again within six months. With a mild mild chemo every six months, it would have held it at this level, not getting worse. Or the full on chemo, administered six times, and the lymphoma would be gone. But the question that burns, how long would he live anyway? He's been in steady decline. My mom, who made the decision in the end, chose the chemo. I think she wants to feel she did all she could. I think I would have leaned towards the middle path. Hard to say, to be in my mom's shoes. I deeply hope the next week goes well. It's hard to imagine my father without what little hair he has left. Or projectile vomiting. or gone....

Are you a slacker mom?

2006-04-01T22:36:58Z

Are You a Slacker Mom?

Your quiz results make you a Smarty Pants Mom

Smart parents like you have smart kids. They need plenty of intellectual stimulation and you provide them with all they need, plus lots of love. You know how to help them with algebra homework, and you are superior at kissing boo-boos.

Take this free personality test by Clicking Here>> or going to www.areyouaslackermom.com

Later that same day....

2006-04-01T01:46:44Z

Well, easily one of the crappiest days on record this year. So tomorrow can only be better.

The whole bs with my sisters this morning.

And I had been up half the night cleaning and up at 6am to clean more. So they could see it for five minutes.. yeeeesh.

Then a loooonnnnnng and long overdue discussion with Jacob's home programming folks about wanting more flexible methods for the work they do with him at home. By the end I had reconfirmed my dislike for the supervisor (who I have tried to replace for months now) who has done nothing for the last two months but one page of icons from Boardmaker, something I could have done in ten minutes myself.

At the end they basically said, if you don't like the way we're doing it, don't use us. But Brookline Public Schools only contract with them, and they don't meet my child's needs.

And the bigger pic is that two years ago they had a very flexible program, and got sued by a couple who only wanted ABA (behavioral methods) with their child, and generalized it to only ABA for everyone.

Now that couple is preparing to sue again, making veiled threats, and this time with the K-8 system, so there we are again, coming up behind them with a child with different needs than their child, about to get short sheeted again. arrrrrrrgh

Then psycho sister's art show tonight - actually got 15 minutes to talk with Philly sister. That helped a little.

Had lunch with a friend today, that helped a lot, too.

Jacob has diarrhea and has shit his pants three times. Decided to use a diaper for the art show. Then again, it is about abstract print making.... :-P

Now, I have a sleeping tired boy, and a pillow and quiet clean house and zzzzzzzzzzzzzzzzzzzzzzzzzzzz....

That hurt!

2006-03-31T16:38:19Z

My sister who lives down in Philly is in town for my psycho sister's art showing. She is staying with that sister, which makes sense, I guess, cuz it's her time to shine with her show. They even penciled me in for a few hours. We planned to get a bagel, show them my home and office, and hang out. So what happens? They show up an hour late and then reveal they have to leave in 40 minutes.

Resourceful, I mention that there is an amazing playground about 10 minutes from psycho sister's house, and that maybe my sister from Philly would like join us on that playground for a bit if we were to drive the half hour up there. Nope, says she, I'm just going to hang out with Lynne today.

Fine.

Politics with four sisters is tricky, at least in our family. I felt like I really got shafted. And having left a bad marriage where actions spoke much louder than words, these actions hurt pretty badly.

If they can't treat me with something resembling respect, can't value time together, well, it's their loss. Jerks.

It didn't help that Jacob had an hour long tantrum this morning. An hour. It was insane. It's the first time we've been markedly late for school because of behavior. I'm hoping he's just tired. Or having a growth spurt. Or a bad dream. Or whatever.

Later that same day....

2006-03-24T02:06:58Z

For those who missed the first entry, this morning, of his own volition, my mildly autistic kid found two buttons and raced to the table to open his play dough to make a train with the buttons for wheels. This level of creativity and initiative is astounding.

So I'm at the playground after school. There was a stay at home mom there, who, I kid you not, when she was working was on the team that defended Martha Stewart. Her kid has astounding allergies, severe ones, so watching and caring and cooking for him is full time. None the less, apparently her sharp mind has rubbed off. Because, on this day when I was so proud that my child took the initiative to make a choo choo train from playdough, my friend's 3 year old child motions her down to look at a spot where he has cleared the ground of wood chips and is carefully arranging a handful.

"What're you doing?" I say, kneeling down.
"Reconstructing a penguin skeleton for a fossil" says the three year old.
"I think the legs have another joint." says the mother.
Another child trips over the carefully arranged woodchips/penguin skeleton.
"Stop!" yells the wee genius, "You're deconstructing my penguin skeleton!!!"

A little freaky, true. I still LOVE the choo choo train.

Oh, and just had my first beer in a bar since, I think, Stockholm 15 months ago. Whee!

Clever boy!

2006-03-23T12:34:50Z

This morning Jacob found two buttons as I was tidying. He grabbed them and ran off to the kitchen. a few minutes later I heard him talking, narrating. He'd made a choo choo train out of playdough, complete with a mountain for it to go up. Completely unguided. This kid has an amazing artistic streak!

This kid is amazing!

Good news, of an odd sort

2006-03-22T21:17:21Z

Well, lessee. Catch up.

Went down and visited my parents and saw a few sisters. The short version:

My father doesn't recognize us, but is nonetheless happy for the visitors. He gets a kick out of Jacob, no question, and I got some beautiful shots of Jacob giving him kisses in his wheelchair.

My mom is worn and harried and trying so, so hard. What we cannot get across to her is that there is nothing noble about over extending yourself to the point of damage. I know she does not want to be seen as walking away from my dad, and she's no longer acting rationally consistantly, but then again, who would? It's gotta be one of the circles of hell watching your sweetheart disappear before your eyes as diapers and walkers and wheelchairs come into play. And I think it's hard for her to accept dad's limitations. She's been so deep in denial about my dad's true state. The man cannot handle a step, and she thinks she's going to get him up and down five of them, even if there was a fire. Easier to be in denial than to face the loss of the sanity that missing a summer at the shore, the thing that sustains her so much through the year.

Watching my father slip towards his end is sad and peaceful, but not tragic. I made my peace with not having been very close to him by now. But watching my mom disintegrate because she's not taking care of herself well enough, it's like watching a car crash in slow motion. yikes.

Down at the shore, two sisters and I cleaned, my mom (who had gotten someone watching dad for the day) knit and ran a few errands, sat in the sun and watched the ocean. Jacob played with his same age cousin, under the eye of an older cousin. The energy between my sisters and I was calm, but the dynamics of childhood don't fade entirely, even after all this time.

My mom had a crisis of sorts 10 minutes before she was to leave. Her shoulder, which she had hurt 5 weeks before, went into spasm. I'm not surprised things came to a head. She was a mess. And still stubborn that she could handle what needed to be done for dad. I headed back that night, instead of waiting for sunrise the next morning. I'd had enough, and so had Jacob. Overstimulation and we needed to be home. Phew! Tired but lovely to be home.

Then, today, two days later, a call from her. She's going to put my father in respite care. She's getting it, that this is too much for her.

So that's the best news I could have heard. Slow motion crash arrested. Yay!

Saint Patricks Day!

2006-03-19T18:45:42Z

Found an old favorite saying for the wearing of the green...

May those who love us, love us,
And those who don't love us,
May God turn their hearts
And if he doesn't turn their hearts,
May he turn their ankles
So we will know them by their limping.

And the good news is....

2006-03-14T11:11:09Z

Apparently my dad's cancer had not spread and the lymph node they took out represented the bulk of it! Yay! So now a very gentle round of chemo should keep things in check as he lives out the rest of his life. Even without the cancer, my sisters and I did not picture him making it to another christmas, but you never know...

He's rallied the last few weeks, as I mentioned. My mom has fantasies (yep, that's the word I'd use) that they'll be able to go to their summer house at the shore this summer. Yes, we say, but what about the 13 steps up to the living level? Well, she says, we'd only have to get him up them once, and then down them when we leave. She refused to consider one of those lifts, the seats that takes them up the stairs. One of my sisters just won't discuss it with her at this point. This man can barely walk with a walker. He shuffles in a classic parkinsonian gait, he falls down a lot. I hope my mom snaps back to reality soon on this topic.

One odd thing with my father is that he no longer fits into the pants he was in 6 weeks ago, and the button is not meeting by a good two inches!! This was a red flag for me, since he has cancer of the lymph nodes, and lymph fluid, if it does not drain well, has to linger somewhere. But if it hasn't spread to the other lymph nodes, well, has his metabolism changed that much? Cuz my mom says there has been no drastic shift in his diet, and his activity level has actually gone up, not down.

On other fronts, Jacob is doing well. He's got persistence down pat, I'm so glad this kid does not give up! On the down side, asking "TV, mamma?" 57 times does wear a bit thin!

And a really really funny moment today in the car... I fell for a fine fellow named Daniel last year. It was too soon after his divorce and we backed off to being friends and now have kind of drifted out of touch, but it never got ugly between us. He made a huge impression on Jacob, partly cuz he was a pilot, and whenever Jacob sees an airplane, he talks about Daniel flying it. And he's got a song that's basically singing the word "Daniel" over and over again, sing-songy. It can be pretty damn repetitive. So today, Jacob kept saying something I didn't understand. I coached Jacob on the syllables I thought I heard (we tap our legs to accentuate syllables, it helps A LOT) and for the life of me, all I could hear was "Blow Daniel, Mamma? Blow Daniel?" I pulled over the car and said, "what? Blow Daniel???" "No, mamma, birthday cake, blow tannel (candle)!!" Well, I think I need to get back out there and date, don't you think? I was laughing so hard, I was glad I was pulled over. The kid says "Daniel" all the time, but hardly ever says "candle", so it's a nice, honest, freudian mistake....

The business continues to poke along nicely. I'm doing a joint project with my massage therapist friend up in Montpelier, VT, who is having a hard time starting to promote himself. So tonight I am writing his flier and press release and he is writing mine, and then we are going to hone them ourselves. In the meantime, patients just keep showing up out of the woodwork. And they tell two friends. And they tell two friends, and so on, and so on... :-)

Oh yeah, and Thursday I am heading down to Philly for a looooong overdue visit. Think good thoughts, okay?

Looking better all around

2006-03-09T09:02:15Z

My father's cancer, it turns out, though of an aggressive type, is not as advanced as was feared! Yay! Apparently the golf ball sized lymph node they took out of his neck was not all riddled with cancer, there was some unaffected tissue! The oncologist my mom is working with is the mother of a kid on my niece's soccer team, so everyone is feeling unthreatened, listened to, and at ease. That is huge! We were not considering chemo because of how it would effect what little mental faculties my father has, but there is a drug they often give in conjuction with chemo, next to no side effects, that should keep this in check as my father lives out his span. They'll give that for four doses, twice a year. I'm glad there's an option, and still concerned how it will effect his brain.

My mom continues her dance, one I don't envy. Denial and fantasy sometimes, rational the others. It's a tricky combination. She's a woman on the edge. Here's a woman who has almost never prioritized taking care of herself, in the caregiver/martyr role again, overextending herself, and slowly I think she's learning a bit more about caring for herself for her husband's sake.

Of course, who am I to talk, if I can't shed this weight to take care of myself, or take care of myself for Jacob's future. Hmmmmmmmmmmmmmmmm.

She's still dreaming of taking him to the shore this summer. There's 13 stairs involved. She's crazy. He can barely walk with a walker. She won't consider one of those lifts that he would sit on. It's crazy. I mean, what if there was a fire? Yeesh.

As for me, well, I'm up in the middle of the night, small bladder, and thought, hey, if I don't update now, when will I?

I'm starting to get patients, which is VERY exciting. And today is a meeting of parents of autistic kids. Yay! I love those.

I had a sad dream yesterday, woke up with grief. I think it was because I watched a show where at the end, it turned out that a woman had lost her child when he was ten, and tried to deal with it by talking constantly about nothing, probably to not think about it so much. And of course it touched this thing in me, my god, if I lost Jacob, and the last time we interacted I was mad at him, how horrible it would be. I've been pretty mad sometimes lately, the kid's testing and if I say "Get your coat on" he hums and taunts and runs the other way. It pushes my buttons. The only voice he'll respond to half the time is the angry voice, one I don't like using. I don't like the pattern it sets up, it's too like what I saw between Richard's parents and between Richard and I. Let's break that chain. So he and I talked about it, and I'm going to make some boardmaker signs to help him keep the chain of things he has to do.

For those of you who don't know boardmaker, it's a visual aide program that helps a lot with kids like Jacob, who process better visually than through their ears. It helps him organize himself.

Time for more sleep!

Strap 'em on!

2006-02-26T02:07:20Z

Well now, it seems that since I got my groove back (ie caught up on sleep and had some fantastic realizations), I seem to have acquired a pair of balls! I'm dealing with some issues in my life more grounded than I have been since, well, ever, I think. It's pretty astounding.

I have a sister who is challenging to deal with. Toxic is the word I hear from non-family friends most often. Almost anything she says is likely to have claws hidden inside, and I compare her to that kind of cat that when you're stroking it, can purr, purr, and then suddenly you need stitches.

jakubicka asked me the other day, why take the toxicity? Why live with that in my life? If she can't say something nice, why stay in contact with her? I had no solid answer.

Anyway, she lives about 12 miles away. And I have found that if I call her once a month or so, it's often enough that she doesn't go ballistic, and spread out enough that it's not too toxic to me.

She brought up to my parents and siblings in Philly this last visit her frustration that she doesn't know how to support me. She finally asked straight out, and my reply was, "Take care of yourself, be happy." She jumped on the answer immediately, what was being implied, what did I mean. I backpedaled and said there had been a lot of stress in her life, and the best gift she could give me was to take care of herself and be happy. Then I changed the topic, really fast.

My second sister called today to check in about life and Jacob. We got to talking about the first sister, and she said I should make a point of pointing out to her when the things she said are not supportive, kind of teach her to how to be supportive and kind by pointing out when she's not. Now, in a time past, I might have gotten into it, I think, or else, more recently I would have nodded along and dodged it. But today, well, it was enough.

I said it wasn't my job to teach my late forties sister how to be kind. See, it wasn't as easy as simply pointing out when she's unsupportive. It's the two plus hours, full of traumatic conversation afterwards that I have no energy for. If there's one thing being sick has shown me, it's about taking care of myself. And I just don't prioritize re-educating my sister as a priority. Plus I don't think she's open to that kind of input. I think she thinks she is, but the slightest straightforward honest comment is met with a fairly aggressive pounce and disection. Nope, nothing I want to pour energy into. I have enough on my plate.

This whole thing may sound small, but for me, after a lifetime of trying to do what I think other people think I should do, being grounded enough to set this limit in my family is huge.

And setting the limit to take care of myself to take care of Jacob the best I can, too, I have no problem doing that.

A note about sleep and sickness and timing

2006-02-23T18:54:53Z

Between this cold and the nasty ass fever I had 10 days ago, I am now officially caught up on sleep for the last year. Finally. Finally finally finally!

I was contemplating why I got so sick now. Why now?

I figure, Since I found out Jacob may be autistic in August, 2004, life has been a focused, straight on full court press to get him the help he needed before the plasticity of his developing brain passed. Language based plasticity starts to fade at 4. Jacob was just over three when he was spotted on a US trip as possibly/likely autistic.

The minute we got back, negotiations ensued with my ex, a man whose strongest skill is not thinking of others unless it serves him to do so. Jacob needed to get to the states to get the services so woefully lacking in Sweden at that point. We invited my ex to come with us, if he was willing. He went through the stages of researching what was available in Sweden, what was available in the US, whether he wanted to join us, whether to block it, etc. The slightest pressure from me would lead to him shutting down for weeks, so I learned not to ask, not to push (much), to wait and wait while my beautiful boy passed the days in his own world, and frequented ours with screams and frustration and tears tears tears.

I learned all I could of treatment methods, read every book I could find, researched parts of the country that had the best services, and continued to work with the autistic kids in my practice, and to pursue treatment for Jacob in Sweden should his father decide not to allow me to take him to the states to live. I was confronted with the triple whammy of the lack of services for small children with autism in sweden, the inadequacies of the system and sheer ineptness of some of the practitioners, and the way some of the practitioners did not take an immigrant seriously. It was beastly. I knew if we stayed, I'd be advocating for my child in another language within an inadequate system that did not prioritize the things the rest of the world was prioritizing in autistic children. I thought I would go mad. It was harder than labor.

It was over three months before my ex, with the help of a psychic friend of his new GF's, was told that the future that looked brightest was if Jacob and I went to the states and he stayed in Sweden.

Whatever. Sign here, quick. and here. and here. and here. and here.

Find an apartment.
buy a ticket
give stuff away
work with the child
sell the practice
pack and ship
give more stuff away
work with the child
pray every moment that my ex wouldn't change his mind again.
buy the tickets
get on the airplane
give my camera to his father full of Jacob pics as some sort of guilt offering.
Off to the states.
10+ hours of traveling - 7 suitcases (big ones), a hyper child, an undiagnosed broken wrist, and me. A fear, until takeoff, that he'd somehow reach in the plane and change his mind.
Start to believe it's real.
Land.
Get picked up by dear friends.
Sleep on an air mattress in a big, empty, gorgeous apartment.
Awake at 2 am with the air mattress deflating slowly. Jetlag.
After 6 days get yelled at by local sister for only calling her twice since landing.
fast forward - register child for testing and school.
get in waiting lists for doctors.
be flat out amazed at the service, tenderness, compassion and thoroughness of the special ed department at Brookline school.
Be astounded by the program they gently tuck Jacob into after 7 weeks (including Christmas holidays).
24 hours of classroom time in a class with 8 kids, 7 teachers/aides, ST, oT, and 4 hours of home OT/week!
set up phone, electricity, gas, cable, internet, furniture, car, all the time work with the child
work more with the child.
learn a new city
work with the child.
Child starts school. Sleep a little. Run errands. Fetch child.
Network. Find office. Get license. Fall in love. Let go of love.
Stumble. get depressed. work with the child. recover.
shop, cook, gluten free diet, more doctors, more waiting lines. Loneliness. work with the child. Try not to be short tempered with friends who mean well. Try not to be a mental case.

And now, a year. And Jacob is going into a mainstreamed, regular pre-k. I did it. we did it. work with the child some more. prepare for my father's death. and wait. and wait. work with the child. FInally believe that the ex most likely won't run off with Jacob if left alone, but I still lock up the passports when he's around.

Exhale.

Get deeply, drastically sick. Friends help out. Fever.
Deeeep conversation with dear chiropractor I've been friends with for 20 years now.
Realize:
-Jacob will never be normal no matter how hard I work
-I don't have to be perfect
-I've done an amazing job.
-I am enough. I'm just fine. I did it.
-That I'm loved for who I am. what a gift.

Exhale and waken slowly to life again.

That brings us to this morning. And now, looking back at this, I understand why I finally could let myself get sick. Thank goodness. It was horrible and it was simply wonderful.

This is a good way to face the second half of my life. Thank goodness. I'm ready now.

Better and better and better!

2006-02-23T18:29:50Z

I can actually breath without a coughing spasm! Well, at least 80% of the time!

And now it's week three without caffeine, or at least without coffee, I had a bit of tea this morning, but that's nothing like I was socking away before. I bet that's where the trouble sleeping came from, in part, too!

I've decided not to go south to Philly this week at all. There was too much risk infecting my dad (or mom), and my other three sisters made it there to support them through the operation. Apparently my father is doing better, a bit stronger, and able to retain bits of info, like hearing at lunch that they were out of Dr. Pepper, and mentioning in five hours later at dinner. Makes ya really appreciate the brain cells you have left now, doesn't it!

So today is a lazy lazy day. Tomorrow I'll start seeing a patient again, just one to warm up on. Monday I'll get proactive!

Jacob and I have reached a kind of cozy ease with each other that we haven't had before. We played games this morning, and he's asking all the time to play hide and seek. I'll doze while he sits and colors next to me in bed, and he's really using his words to ask for things. And if we sit and watch a tv program, we often hold hands, and after two weeks of me reaching for his hand, he's reaching over for mine! Huge step for a little autistic child!

A local parent has reached out to me as a resource for learning about Floortime and DIR, a play based, relationship focused method for working with kids like ours. We're meeting Monday morning, and I'll explain the basics to her. I'm also going to get a lecturer in to explain it more professionally to a group of curious parents. Very exciting stuff! (for more info, check www.floortime.com, or www.stanleygreenspan.com) I'm actually resgistered to attend the conference in DC to learn this stuff from Greenspan himself! Whee!

My sister mentioned that she would not be surprised if I changed professions to work with autistic kids. It must have taken a whole ten seconds before I responded, "Hell no!" I'm good at it, no question, but this was a labor of love. And I love what I do already. So that would be a "pass" but thanks for playing!

Daddy-o came through okay!

2006-02-22T10:27:28Z

Well, my father had surgery yesterday to take out the enlarged lymph node in his neck. There had been a lot of deliberation about the wisdom of this move in my family. For a while we thought it involved general anesthesia, which can send a dementia patient down a plateau, often not to return back to their pre-op cognizance level. We finally found a someone who would do it under local with mild sedation. The guy was hesitant at first. While it's usually done under local, with a dementia patient they usually use general, so they don't get up and wander off during the operation.

So everything went swimmingly! It took over an hour, and apparently the lymph node was deep, down by the jugular vein. The surgeon took 80% of it, and it was still the size of a golf ball! The Doc feels it's almost certainly lymphoma, but the results will come in later this week when they examine what came out.

If so, that begs the question, is it primary or secondary? Where do we go from here? We all (in the family) feel that he wouldn't survive chemo. Radiation therapy, on the other hand, is coming up for discussion. To be honest, I'm not sure where I fall on that one. Is he sufficiently close to the end that we should just let him go easy, without turning his last weeks/months into a radiation treatment nightmare? or will he surprise us and keep going for years?

On the homefront, I haven't been down to see my father as planned this school vacation week. The fever I had last week slowly blossomed into a sinus infection when I leapt back into action much too soon. The sinus stuff has gone down my throat to my chest. I've been in bed, coughing coughing coughing. Jacob's been swooning delightfully in the arms of Dora the Explorer and Go Diego Go! While they are tiring to hear repeatedly, I have to admit it better than Teletubbies, and Thank God he never went down the big purple dinosaur path!

My father, who had been failing steadily, had been stronger and stronger the three days leading up to the surgery, and I felt really sad to miss those days. And at the same time, not despairing, because there was nothing I could do about it but lie back, take care of myself, and heal heal heal.

Yesterday was a delight when my old college friend, Corby, his wife Lalitha, their child Garidja, and their wonderful dog Pria came by for the day. They live up in Montpelier, VT, and were down at Logan Airport at 5 am yesterday morning, dropping off her parents for their long trip back to Malaysia. It was just wonderful to hang out with them. A real spirit boost.

very brief update

2006-02-18T13:37:05Z

Nearly a year now, gonna give this another shot!

Update for the following year, in brief -

-Jacob has evolved from a screaming, hitting, non-communicative child to an interactive cutie that wins over everyone's heart. His vocab has gone from a dozen or less words to being able to negotiate situations. He's gone from a separate classroom with nearly one on one teaching to being slotted to be in an inclusive (normal) classroom for pre-kindergarten next year. To make a long story short, all the work has paid off, we did it! He will always be wired differently, but now, before the windows of development close, I'm working hard to give him the tools to be social should he choose to do so.

I was amazed at a meeting this week of autistic parents to find out how many of them don't do work session with their kids, (or in our case, play sessions). One has never even had a play date for her 3.5 year old! And when I suggested she let her child hide three toys when other kids come over, so she would feel better about sharing, she said, Oh, no, if M**** gets upset about sharing, I can just throw her in her room. Yeesh! Where's the respect? Sometimes I read the Blog of an autistic woman in Sweden who's deeply involved in autism rights, and it sounds like she was raised with the same lack of respect. I can certainly understand why she's so proactive now. For a long time I reacted, nearly hyper-reacted to her posts, wondering if I was disrespecting Jacob in any way. In the end, it turned out that the common thread for her post seems to be making sure you listen to and respect the child. Hell, sometimes I think I do that TOO much, but I think I've got a good balance of limits and rules to balance being very sensitive to his needs. The difference between respect and structure, if you know what I mean.

So, let's see, other evolutions this year. I had a huge fever this past week, and saw my chiropractor daily for about five days. This is Tim Knight, the chiropractor who inspired me to be a chiropractor. I received some of the most loving adjustments I have ever had the pleasure of receiving, though I have given some very loving ones. We had some deep talks while I had the fever, and some truths finally broke through to my brain - A lot around not having to be perfect, especially in parenting, and about how I am actually doing a great job with Jacob - before I could only see the flaws and was even holding up the standard that if I cold get Jacob to some semblance of normal, my job was done. Unattainable and not fair to Jacob! It's been wonderful letting go of that. And since the fever, I've been playing with the idea that I really am enough, I'm okay. Those that know me know I've had the low self esteem thing going on for ages, since I was a tiny child. And now I get it more, that the things that brought me to that conclusion were really NOT about me, I was just a small child, and just a fine one in a tough situation. It's been something, very sweet, very powerful.

And so I am heading tomorrow (Sunday) to Philly to see my father, who's got Alzheimer's and Parkinson's, and now a lump in his neck that they think might be lymphoma. We've been grieving so much this year, I'm peaceful with him passing soon. THey will operate out the lump on Tuesday to see if it's lymphoma, a step I am fairly uncomfortable with. I think starting the medical intervention path with lead to a downward spiral of more and more intervention, and that will lead to a not so peaceful death in the end, I fear. We'll have to see what reality is, though. My mom is so worried about him, we're hoping finding out what it is will calm her (It's bigger, it's smaller, it's bigger, it's smaller....). Here's hoping!