Twinkle Little Star

Why Do I Find Them So Adorable When They Are Sleeping?

Is it because they are being their cute selves while also giving me a moment's peace?

First Steps

At 15 and a half months, here is the kids' weights:

Aaron:
21 pounds, 14 ounces
6th percentile for weight
2 feet, 7 inches tall
41st percentile for height

Naim:
22 pounds
14th percentile for weight
2 feet, 6 1/2 inches tall
26th Percentile for height

First of all, this is the first time in recorded history that Naim has weighed more than Aaron. the kid who didn't eat for the first month of his life now eats circles around his brother, who has become a bit of a picky eater. Second, notice how much 2 ounces and 1/2 inch makes in the percentiles. People always seem horrified when I tell them the percentiles, but there is really just a couple of inches/pounds between the 3rd and the 97th percentiles. These are not adjusted for prematurity, which officially they can do until the kids are two years old. They've followed their percentile arc appropriately, actually they've only jumped up to higher arcs since the beginning when they were dropping below the charts. So, they are preemie twins, still. And they are doing good.

Finally, a drum roll is needed......

Naim took his first steps!!!

Now, he has taken a little step or two before, but I'm going on record as his first steps being today, March 23rd. Today he walked about 15 feet all the way across my living room while holding a push toy in the air. I think he thought he was holding on to a walker or something. I had to test him to see if he knew he was walking, because his is a confidence issue and I wanted him to know. So (and this is what single moms do in lieu of husbands) I propped him up on a coffee table and then sat in a chair about 5 feet away and encouraged him to walk to me, and he did it several times. I'd walk him back, and then he would walk to me. He was ecstatic with himself. Before, when I've tried to do this, he would just drop to the floor and crawl, even if I was only six inches away. After this he got tired and was a crawler again, but I'm thinking this was a breakthrough after 6 months of cruising.

Still no word from Aaron on whether he ever intends to walk. But I think Naim walking might give Aaron an idea or two.

So, if you are reading this and you also know that pseudo-husband of mine, do me a favor and don't let him know yet. I think if I tell him, he will be sad he missed it. But if I wait a few days and show him by surprise (if Naim will cooperate), I think it will be more fun for him.

What am I gonna do with an ambulatory child who can move through 3 dimensional space without borders to hang on to? I mean, he walked right across the living room.

Stop Go Stop Go Stop Go

Is it insane that I hang on to this one little thread that keeps me from being totally jealous of Dooce? I mean, she and her husband live off her blog, she has herself, her husband and her babysitter AND her mother all vying for time with her ONLY ONE child, Leta, and she gets all expense paid trips to Amsterdam? What is the one little thread that I hang on to that I have over her, you ask? She lives in Utah and I DON'T!!!!

Pretty weak, huh?

So, in other news...lets talk about how broke I am and my brokedy brokeness and all my broketivity. As I've said before, I live off of a lousy SSDI check and a lousy salary from the state, as a home care worker for D. When he is in the hospital, I don't get paid. In addition, the State lost my time sheets for both December and January. They've since just been found, but I haven't gotten paid on that job since last November. Then SSA decided just to pretend they gave me some $8000 they had extra lying around, and then didn't pretend they wanted it back. So I'm in an appeals process with them right now, but they haven't paid me since January. I've just this week convinced them to start paying me again until the appeal goes through (which could be months or even years) and they've agreed to start next month. So, I've got a Dec. and Jan. check coming, and SSDI in April which is good. And I just cashed a $400 check that I had forgotten about that was for D's share of our shared cell phone bill for the year. (Before you get on our asses for being poor people with cellphones, remember, that you don't use semi reliable public transportation and you can see where pay phones are and you can get out of your car and change your tire if it goes flat.) So, its not like the  babies won't eat, but the babies are not going to get their new bedroom furniture this year as I had been saving for. It's okay, it doesn't mean cribs till they're 18, I have the furniture in their room that has a twin bed and a trundle bed thing (with no mattress). This is very girly furniture that was mine as a child. (It's yellow. You can see it in some of the pictures.) The plan was to replace that this year, but they will have to wait. All I really need to get this year are two new twin mattresses. One for the trundle and one to replace the one from 1976.

It's good to be broke every once in a while in a way. It makes you really look at your expenses. I'm already looking at what I need to trim down. I could get a better land line deal and go to Vonage or something. I could get rid of the cable because for the most part, I never watch it much... though my dad does...hmm. I could look at better Internet access. (And before you get on my ass about being poor with internet access...you try calling the pediatrician or the guy to fix your water heater when you can't read a phone book.) Things like that. Luckily I have already bought summer clothes for the kids in a buying spree at the Carter's outlet store and at a consignment shop. They will need shoes, though, this summer. Baby needs a new pair of shoes! Or two. I've been in a giving program called Woman for Woman International where I give direct cash to a woman in a third world or war torn nation. I sponsor one woman a year with $30 a month. (Which is more like $300+ a month in their countries.) I could take a rest on that if needed, but I'd rather not.

I have two job plans going on right now, but they both have a little bit of ramp up time before I see a return. The plan used to be that D would get someone to replace me and I would gradually phase out. But now, it looks like I won't be getting paid in April, either, as he is going to go to the rehab hospital instead of coming home like I had originally thought. He gave me the go ahead over the weekend to start hiring attendants, and I put ads in Craigslist and some other places and already got several applicants. Then Monday night he tells me that he's not going to be home by the end of the month, he's going to rehab. I guess that is good, health-wise. It is probably the right move. but I had to get back to all those applicants and tell them the deal and see if they want to hang on or not. And if he gets out in April and I start working part-time in May, I'll be out approximately $6000 worth of earnings for the year. That's like almost a third of my income. Of course, he is loosing money as well, as he has not been able to work either.

When you have a previous disability before employment, and you are on/have been on social security, you do not qualify for unemployment, or short-term or long-term disability from your job. It sucks.

So, anyway, my two job options I've been pursuing are to either do medical transcription or take in another child or two and do daycare. Both allow me to work at home. With medical transcription I have to go through an on-line training course that takes a few months. It looks pretty easy and I already know A LOT of the medical terminology so I could breeze through it, but you kind of have to have it to get placed. Then, they say it takes a few months to get your skills fast enough to make a good wage. You get paid by the word/page. With childcare, I could do that simultaneously with my own kids. So at the end of the day, I'm DONE. I don't have to do a whole nother job. Medical transcription pays more, but I wouldn't have much time to rest. It wouldn't be required of me to get my house certified for child care if I only took in a kid or two, but since I am disabled, I need all the credentials I can get to get the confidence of the parents. So I was trying to learn what I would have to do to get certified, and it ends up being a top to bottom child-proofing deal. Like, anally so. So I have been working on that as well.

Now, I'm wondering if I shouldn't just get something real quick. Even if it is just temporary. I'm almost a bit past the point, disability wise, where I can go into a job cold and apply for it like everyone else. I really need now a unique situation that is set up for me. I need a job developer. But I've thought about doing these work at home thingies that are advertised all over the place where you stuff envelopes or something. Does anyone know anything about those? Is it a scam? I need a quick and dirty emergency job for when stuff like this happens to me. Something where I can get a few hundred dollars when I need it here and there. But I have to be able to do it without too many accommodations and work at home and have it not be a long term, deadline driven thing. Hmmm.

I was supposed to start going to the gym this week. Sigh. But Monday I had to deposit that check, which is a big errand for me since there are no ATMs or banks close by. It ends up, my bank has a branch right across the street from D's nursing home. So I took the kids up there for a bit. I still have not put my kids on the bus. I totally could have and then gotten off the bus right there. But instead I decided to take the train and then walk about a mile there and back. so that counts for a workout, right?

Then today I had to take the kids down to my church so I could prepare the classroom for a new unit and get supplies ready and stuff. I got toys for the kids from the nursery and still they drove me bananas. I was trying to make a time line on a long piece of poster board and they kept trying to grab scissors, markers, paper, everything. What should have been a 20 minute visit ended up taking me an hour. After that, I went to the store, so that whole round trip was probably about a mile and a half. All this is pushing/pulling (the blind people way) a double stroller. So, hey, I'm working out, right?

On the way home, I thought I saw D's van but wasn't sure. Then it honked at me so I assumed it was D's father and waved. Then it had turned around and came up behind me and rolled down the window. It was D's father, but it was also D! He was on a pass out of the old folks home. He did this for the first time last Saturday. It was his first time up in the chair and he came home and we went to visit him for a little bit. This time, he was going to...Office Depot. The guy hasn't been out in public for three months and he gets a chance to get out and he goes printer cartridge shopping. What a nerd! But it is good because he got it so he could get some paperwork done at his house to get his life managed. And that is the NUMBER ONE PRIORITY around here...babies need a new pair of shoes!

One Tree, Many Branches

Today I was thinking of donor issues for some reason, and went surfing through the net about it. I read through the net that 60 minutes was having a story on donor siblings tonight coincidentally, so I watched it. I think it was pretty well done. The only thing that made me cringe just a little was that one teenager who was born to parents with male factor infertility said that he put N/A on forms that asked about his father. I assume his mothers husband would have been on the forms, but then they reported that the couple divorced when the boy was one. So, I don't know the circumstances, of course, but it seems to me that the fact that the kid puts N/A on his forms has more to do with that husband leaving than the fact that he was a donor kid. It did not mention, but seemed to imply that the husband was not in the kid's life.

I have heard of husbands agreeing to, and then tripping out about a DI pregnancy. A very sad situation that hopefully doesn't happen that often. To me, it seems like it falls under a similar decision making process as adoption. If you are going to go ahead with having a child and caring for a child that is, for whatever reason, not biologically related to you, you've got to go all the way. It is not an optional thing that you can change your mind on later. I don't know, but it made me curious as to what the laws are as far as child support are in that situation. Did that guy get out of child support because he was not biologically related? Today, that totally wouldn't fly, at least in my state. But this was several years ago so who knows? Maybe then, he wasn't obligated, even though (we can assume) that he agreed to participate in the creation and parenting of that child? Hmmm.

As an aside, and this is for you, Twisty...you know why I think men are OK with adoption when there is female factor infertility but not okay with donor insemination when there is male factor? Because they think somewhere subconsciously that they own their wives reproductive systems and don't like the thought of another man being involved in their property, even though if they adopted, another man was involved in that child's creation as well, but that was some other man's woman. Yes, I blame the patriarchy! It is rather bazaar when this happens to women who did DI. I've read some tragic tales on some fertility message boards. But, I've said it before, D has had no stupid macho bullshit issues with the fact that the kids are from DI.

I also read some blogs from young adults that were the product of DI and were MAD about it, and lost, and depressed, and searching. Of course those types of things are nightmarish to read when you have two DI kids. But I noticed that all of them were not told that they were from DI until they were teenagers or adults. I completely don't understand why parents do this. It's only like one car accident or organ transplant keeping the kid from the truth of that secret. And keeping it a secret just gives the implication that there is something shameful about it. Then, these kids had to deal with the shock of being lied to for years, the whole self-image thing where who they thought they were was not as they thought, and also I think that these people were born in the 1980's, and things are much better now as far as acceptance and openness.

I had always planned to tell the kids from the beginning about how they were created. In this way, it isn't like that part of them that they thought was related to one family isn't ripped away from them with a big question mark to replace it with. My kids will have three family histories, not two or one. My history is their history. The donor's history is their history. And D's history is their history, too. Genealogy is as much about the fate of people's lives crossing as it is about DNA. The history that got D to be their father is also their history, DNA or no. When they have that project to make their family tree, it's just going to have three branches.

And to tell you the truth, I know more about their donor's family genealogy than I do about my own. I have a whole file folder of information and family history about him. I have a recording of his voice during the donor interview and I have a picture of him at about 3 years old. And, like the 60 Minutes story, we are also in contact with some of their donor siblings. I wrote about this a while back, and since then I have found two families that share their donor and we have exchanged several emails and pictures, and that is all going well. So really, they will have a lot of information and biological contacts with that 'third' side of the family.

I've always been a proponent of Chosen Families, even back when I never thought I would be in a situation where I'd be using a donor or thinking of adoption. It just made sense. I'm not quite sure what to do when people go off on DNA and genealogy. I don't get when men (mostly men) talk about it being the end of their line if their children are adopted or from DI. Their line is continuing. There might be a hiccup in the genetics of it all, but we are all genetically related somehow. I think genealogy is interesting in a novelty kind of way. I understand that there are important medical considerations with genetics. I understand that it is interesting to find out about your ancestors. I don't see any problem with that, but when people take on their ancestors accomplishments as their own, it is kind of funny. For every great-great-grandfather that was a hero, there was likely another one that was a crook, you know?

I know there is the whole nature vs. nurture thing. But I think what effects who you are the most is probably the main people in your lives that raised you. Whether its biological mom and dad or grandparents or adoptive parents or two moms or aunt and uncle or unrelated guardian or whoever. The people who were fundamentally committed and involved in raising you are probably the most important forces in your life in childhood, no matter where you came from.

A friend of mine is a bi-racial woman who was adopted by a white family. She eventually found her first mother. She said that it was interesting to see the similarities like the way she tilted her head to the side, things like that. I remember that she told me that the more her parents discounted her biological mother, the more she wanted to see her and made up a fantasy about her. She told me to just include the boys' donor as a normal part of their history and who they are. Don't make him out to be great, or a villain. Don't lie and say that someday they will meet him and he will want to be in their lives, and don't lie and say he never wants to see them ever and they should not ever think about him. Just accept that you don't and maybe won't ever know that much about them, and the only thing you do know is that he made their lives possible.

A lot of this business about genealogy and how if you don't know yours then part of your life is lost in a black hole seems a bit made up to me like a social construct that has developed because of a bias towards husband/wife/biological families. But I've not been in a position of looking for my biological parents, so I could not say for sure if I'm totally correct in this. My father's family history only goes back a few generations because his great-grandfather was picked up as a child at Ellis island with only his name pinned to his shirt. He was later sent on the orphan trains and adopted. This is interesting in that it shows how that side of the family ended up in the Midwest, but it doesn't give any indication as to ethnicity or anything else, and still the family managed to procreate (and adopt) even without the knowledge of where that part of the family came from. My mother's side of the family, I know next to nothing about. And frankly, I'm pretty sure I don't even want to know.

The kids will be told as naturally and age appropriately as possible, all the information that we know about all three of their families. And then I'm going to support them in whatever they decide to do with that information. Ethnically, they are half Jewish and Russian via the donor, so if they want to pursue that, they can. They are also part Arab and Irish (me) and part Slovak and English (D). Yes, I will repeat, they are part Slovak. Even though I know all those parts would add up to 150%, how can that be a bad thing? As much as this affects who D is and how he got here, it affects them. If they want to study Slovak history because it means something to them as it is a part of their father, then I'm all for that. If they want to pursue relationships with their donor siblings, I will support that. If they want to track down the donor when they are 18, I support that, too.

I learned this from one of my cousins, whose biological father was Jewish, then his stepfather who raised him was Korean, yet raised in Japan. He has a Japanese last name, and his (half) sister is biologically part Korean. So he is part Jewish, Irish, Japanese, and Korean. You can't have all these influences in your lives and have them not be part of who you are. You can't negate the part of you that just doesn't happen to be biological, nor can you negate the biological influences. So rather than looking upon those children from adoption, step families, DI or whatever kind of chosen family as having a deficit in some area or missing something, it seems to me that all of it can be embraced.

The mother of one of their donor siblings and I have talked a lot about these issues. And in the end, we can't decide beforehand for them what is going to be in their best interests on some of these issues. She said a great quote once: "Sometimes we can't cross a bridge for our children, sometimes we have to cross it with them, and sometimes they have to cross it alone."

Rearranging

I'm having to make rearrangements because my father left and D is coming home and I'm fat and the kids are changing so they demand it. So, this is all tedium, but this is what I've got so far:

The kids are still going to have to get up about 8:30 or 9:00 and have no morning nap. We've been experimenting, and they are too cranky if they get up earlier. Some one of you suggested that I put them to bed earlier and were shocked that they don't go to bed until about 8 or 8:30, but there is a reason for that.

Which is, I will be starting to work evenings again for D soon. And basically when I leave D, he is more or less done for the night. So leaving him any earlier that 8 makes his day incredibly short. So, now it looks like we are going to try to have someone come in the morning for about 3-4 hours, then he will be by himself for a while, maybe even able to sit up for a while in that time so he can do more for himself, then I will come from about 4 till 8. Depending on what the social workers do with the hours, I may have to come everyday, or possibly we could get someone for a few of the days. So I will take the kids over there after their afternoon nap, then we'll all have dinner over there, and I'll probably put the kids in pjs and do bedtime bottles over there as well so I can just come home and throw them into bed around 8:00.

On Sundays for the next two months, they will have to get up at 7 am and come with me to the early service where I am teaching Sunday School. But I'm not going to stay for the second service anymore. It has made the rest of our day miserable. And I'm never going to volunteer to teach the early service again! I committed to this a LONG time ago and I must have been temporarily insane. Next year, I'm going to only do team teaching at the second service. No more "lead teaching" for two months straight. Ugh.

I'm going to start going to my gym on MWF mornings. But I'm not getting everyone up early to do it. I'll go about 10 to 12, then come back and give the kids a wee bit of playtime, lunch and nap by 1:30. Up at 3:30, snack, and over to D's. So there will be no, or very little "school" on those days, but I have to remember, there is a very nice daycare at my gym with lots of toys and other kids and nice daycare workers and they will actually have fun and learn stuff without ME!!! I need some time without them as well. Sheesh. They will still have 3-4 days of 'school' time. AND, I'll say that lugging these two 20 pound babies up and down a flight of stairs several times a day has made me quite muscle-y. But you'd never know because all of my muscles are underneath an overload of fat. So, I'm kind of looking forward to getting back to doing some cardio and taking off some fat and seeing what is under there. If it looks good, they may not be allowed to walk until they are five. The twin workout is just too good!

Also, I'm giving up the playgroup, at least temporarily. I don't think gymboree is for us right now. Its great for some kids, but Naim just doesn't like it. Aaron is fine with it. But for Naim, it is too overstimulating, too rushed, too short of a time period for him to get acclimated, he spends the whole time sniffling and clinging to my leg, which means that Aaron is just wandering off on his own not doing much anyway. I'm looking at another playgroup that is MUCH quieter, less expensive, and easier to get to by train. It is two hours once a week, and calm and relaxed, more evenly paced and thoughtful. It is a Waldorf school program, which I don't know a whole lot about, but it reminds me of Montessori but with more pretend play and drama. The only thing is, they have to be 18 months old, so that is a few months away. For now, Gymboree isn't worth the trouble, and its not like they won't be getting social time in the Church nursery and at the gym daycare, I just won't be there to see it. Which is not that bad of a bad thing.

Now I will fess up about my diaper usage. I wrote back here about how I was ditching disposables and only using cloth and/or gdiapers. Well, I still use all three. I always use a disposable at night because NOTHING ELSE WORKS. And what is the point of having a diaper on if it is going to leak all over every night? I've tried using doublers, but that only makes the diaper last until 2 am instead of midnight. I got sick of every morning (or every 2 am morning if they woke up and had a fit about it) cleaning up a big mess of pee soaked blankets. Also, the kids were getting diaper rash a lot more. So now, I use unbleached organic chinese prefolds with Bummi wraps about 75% of the daytime. I use gdiapers about 25% of the daytime, usually only if I'm going out in public or know that I need a little bit longer before I change them, or I just haven't done the cloth diaper laundry. Cloth diapers are just easier than gdiapers. I really like the company, and was hoping that I'd love the product, but I just don't. The flushing...er, clogging... is a bitch and I rarely ever do it, the assembling of the diapers is more time consuming than cloth, and they are inconsistent as far as leakage goes. The gdiaper cover, now that mine have been washed several times, are coming unraveled and the elastic waist doesn't hold everything as snug anymore. They also cost a bit more than disposables do. Cotton prefolds and bummi wraps are the simplest thing next to disposables. I use 'em, dump them in their own hamper with a bummi hamper bag and baking soda in it, then throw the whole bag (with the baking soda for detergent already in the bag) in the washing machine about once or twice a week, and barely bother to fold them up. Easy. I do cheat about once a month and use Tide and chlorine bleach on them, but you don't have to, they do get clean with just hot water and baking soda, but I'm anal that way. I have two dozen cloth prefolds and 8 bummi wraps (remember I have twins) and that gets me through with twice a week washing and cost me about 50 bucks. But still using Huggies at night, but one large box now lasts me weeks and weeks. So, call me the Lazy Environmentalist.

Finally, I will say that Naim, who has been in a constant state of whining or tantruming for the last month or so and getting on MY. LAST. NERVE., has suddenly opened up into a wonder child of pleasantness. I don't want to think that it is because my father left, but I kind of suspect that is what it is. The house is just so much more calmer now and more organized. It's not that my dad purposefully does terrible things. It's just that he's this loud, TV on all the time, lumbering, hyper guy with a small, skittish, loud, hyper dog that he never bothers to supervise. I feel like I have quadruplets when he is here. I get tense, I lose track of things, I get tired, there is always stuff going on in the house, the dog is always barking or getting into the kids toys and destroying them, then my dad yells at her. It is kind of chaotic. I forget how calm and peaceful things are with just me and the kids. Naim likes my dad. In fact, several times over the weekend he walked me over to my dad's bedroom door and pointed at it and looked at me in confusion. I finally had to call my dad and have him talk to Naim on the phone, and that seemed to help. My question is, is Naim responding to me because I'm more calm? Or is he responding to the environment as a whole being more calm? And what can be done about it next time? I mean the kid has been a joy to be with the last three days, where I swear I almost couldn't take him anymore some days in the last month or so. One thing I think is that if my dad came without the dog, our problems would decrease by at least 50% if not more. I like the dog. I don't think it is her fault or anything. The kids even like the dog. Its just that she is an old, skittish dog that really doesn't get enough attention or supervision here. I can't always be supervising two kids, a really fast moving dog, and helping my father find his glasses and his wallet all the time, you know? There is a lot more going on here than in Kansas and she might just be one of those dogs who shouldn't be in a household with children. She's just too hyped up and she destroys EVERYTHING. She destroys their bottles and sippy cups, their toys, she eats the kids food (she gets right on the table when I'm not watching and my father never pays attention). She gets up in their faces and makes them cry. I can't take all the kid's toys away because of her. So I'm going to have to work on my sister to see if she will take her instead of my dad bringing her here. My sister travels a lot for her job. I'm almost like, "Hey, I'll pay for the kennel when you are out of town if you'll just TAKE the DAMNED DOG!!"

So, I guess our schedule isn't going to be all that different. Its get up, breakfast, school or gym, lunch, nap, snack, D's house, dinner, home, bedtime. It just feels different to me because I've had a reprieve from working for D, but instead have had to deal with Naim, the dog, and my lumbering, loud father. So this schedule in a way seems calmer and less stressful than all the 'free time' I was supposed to have been having.

The One About the Power

So, Moms out there, especially those with, say, 6 month to 24 month-old kiddies; what is your schedule like? I'm needing to make some adjustments to ours. I'd like to get to the gym, I'd like the kids to be up earlier in the mornings. Does that mean I have to start a morning nap? I've never been able to get them to do two naps a day. But then I let them sleep till 9 most days. But then when we have to get up early for something (like me teaching at the early church service, it seems to make our day a living hell. I'd like to get them to some kind of outing (like a playgroup) about once a week. I'd like me to get to the gym about 3 times a week. I'd like to add a morning snack for them. I'd still like to keep some of our 'school' time together. My dad is gone now until summer so I also have to factor in more housework and lawn mowing, and D has another couple of months of healing to go, so I can't factor in car transportation at all, but can factor in going back to work for him soon. There are enough hours in the day to do all of this, I think, but it is a matter of working around the kid's six mealtimes and one or two naptimes. It means I get to work in these little one to two hour chunks. What are your days like? It is just a matter of figuring out a schedule that keeps the kids in some kind of routine that is at least semi consistent from day to day.

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

It looks like D will be coming home in the next week or so. Probably by the end of March for sure. So, I'm back to work, which is good because I not only missed 2 and a half months of salary, but I didn't get a SSDI check for March either.

(Side story: Get this. SSA says that in December, I accidentally received almost $8000 in mistaken over-payments. If that happened, you would have seen me jumping in confused joy back in December. Did you see that? No? That's because it didn't happen. I gave them my bank statement showing NO $8000 deposit as I get auto deposits. But it is very hard to prove a negative. So out of nowhere, they wrote me a letter with no explanation telling me that they were not going to pay me for the next 8 months in order to get that overpayment back. After several phone calls, I was told the information above, and I had to file an official appeal. Then, they said they weren't going to withhold my checks until the appeal was decided, but I still never got a March check. Now, they said it came on March 6th, but it didn't. So that is a whole nother thing that I have to decide whether I want to pursue. I'd have to file another appeal. Apparently, due process costs me a lot of money. Then, I wait like two or more years for an appeal date with a judge who works for social security, and then they'll decide to take $8000 away from me then, but at least that way, I can be expecting it and save up for it. That is the way these things work, folks. I've been here before. SSA accounting mistakes can only be postponed, not corrected.)

But after worrying about a roof over our heads, and food, clothing and health care for all of us, I don't worry about money. There is no point to it. It is too unpredictable and out of my control to pay much attention to it.

So, I've been given the go ahead to start the hiring process for a new attendant for D, which you may remember that I started before D went in the hospital and then postponed. Now I'm back on it. This will also cut my check, but I'm a realist and know that this is what is best for D and I in the future. Right now, I will still be probably putting in the same hours I always have even with an additional person while he recovers, but eventually I will have more time to pursue other ways for me to make money, I hope.

Here is a sad conversation I had with D yesterday. Things like this break my heart in a way I never expected before having kids. I've stayed politely out of the way of D's visits with his family members and have only asked D about the visits in sort of 'matter of courtesy" polite and general terms. I'm glad that he has had them to visit and for them to bring him some meals. They've been bringing in old photo albums and sharing old stories with him about their lives before him (he came along after 4 other children when his parents were in their 40's, so there was a long family life before him.) So he's been telling me a bit about that and that's all good and fine.

But then I off-handedly asked him if he showed the pictures of Naim and the IV pole from his cell phone, since there was all this picture sharing, and he answered "No, I can't talk about those kind of things." (and here we go, paraphrased to the best of my memory.)

Me: What kind of things?

D: Anything about my life. The kids, anything about me, my family and you.

Me: Like at all? Not even Naim walking with an IV pole? That's rather innocent and noncontroversial isn't it?

D: Anything about the kids. Anything. I don't know. It is really awkward. I just go along with whatever they talk about and just go with it. It is kind of a don't ask don't tell thing. Its just very weird. They don't ask anything. If I bring it up, they change the subject. Its very weird. I just go with it.

Me: (I've heard this kind of thing for years off and on, and I've always said the same thing.) You know, you can say, "I want to talk about X." I mean they are supposed to be there for you, right? They are visiting you to give you support? At least part of the time you should be able to talk about what you want to.

D: No, I can't. I'm just feeling very vulnerable right now. I'm sick and just laying here. I know I'm going to need help when I get out. I can't make them mad. I have to talk about what they want. I'm just feeling vulnerable around them.

Me: (Had this conversation many times.) So you still think they will withdraw support if you say something they don't want to hear?

D: Well, they did it to you. They've done it to [other siblings], so , yeah. It is always a fear if I bring up anything controversial with them, which is basically anything except talking about their stuff. And my butt, of course. That's the only thing they acknowledge I have going on right now, is my butt.

Now, I will tell you that in my opinion, I honestly don't think that D's father will withdraw support or end a relationship if D says something that he doesn't agree with or is uncomfortable talking about. And D's father is the one giving the most consistent and concrete support. However, I think it is a legitimate concern with some of the other family members. And I think the deal is, if the other family members withdraw support, it makes it very difficult on D's father and D doesn't want that. So it's ridiculous on many levels. And very sad for a lot of reasons, but mostly because D is cut off right now from much of the real acts of being a father. I have only been able to get the kids there about once or twice a week, and then only for about 30 minutes or so. Since he is stuck in bed in a very small space with lots of things the kids can't touch, there is only so much they can do there before they start going batty. So, D needs to feel like he is a father to them by BEING a dad, talking about dad things, being recognized as a dad, if he's not so much doing the dad things right now. I talk to him for a couple of hours every day, and a HUGE part of our conversations is him asking me about every little thing the kids do all day long. He really enjoys talking about them and hearing about them. To have to cut that aspect (and some others) out of his daily visits from his family is really quite cruel. He says that unless he is talking about how well his butt is doing and how his health is improving, they don't want to hear anything else. Even talking about going back to school and to work, its like they just get worried that any sort of overexertion will be too much for him. He says they put the burden of their worry on him, and make like it is his job make them feel better by only talking in references as to stuff himself in bubble wrap and have no life just so they won't have to worry.

The other thing that is very sad is that the idea to me that my little cute angel of a Naim and an Aaron are taboo and off limits to anyone. Amazing. So cruel to them, and they don't even know it. But someday, unfortunately, they will figure it out.

I'll interject here that I'm using the word "they" here as a gross generalization. It isn't everyone. for what it's worth. But its enough of everyone to make the daily visits awkward for him.

Parent/child relationships are tricky as adults when they are dependent on each other for things. Since I'm living in my dad's house, we have our own struggles with this. My dad and I don't have the same power differential as D has to deal with. I am a renter, and I pay all the expenses that the house incurs except for the base value of the house, which my dad paid off mortgage free, with money he inherited from my mother's death. I pay utilities, property taxes, homeowners insurance, etc. He doesn't make any sort of profit from me. We go year to year as a "lease" term. I have to give notice if I move out, he has to give notice if he decides to sell at the end of the year. But when the house appreciates, I will not benefit from its sale. If he dies, the value of the house counts with the entire estate and that is divided between my sister and I, so I'm not guaranteed this house forever. It is about the same as me leasing an apartment, like I did before, but with more square footage. He could not afford this second home if I didn't pay the expenses, and I couldn't afford to rent a house like this if he took a market value profit. So it is kind of a mutually beneficial deal. But that doesn't mean he doesn't occasionally pull the "this is my house so you'll do as I say" crap. The difference is, I don't let him get away with it. I call him on it. I mean, certain things, I have to defer to him. I would not make any major changes to the house without his permission. Last year, D ran his wheelchair right into a door and made a hole clean through it, and I had to face the consequences of that and pay for repairs, but in other areas, I insist that we are roommates and have to negotiate as such. TV schedules have to be compromised on. Child care and house work have to be agreed on. It is tough because there is still that father/daughter dynamic, and it is a constant bit of energy that I need to keep up in order to not feel like I'm 12 years old living with daddy. And sometimes he doesn't listen to me until I tell him things 6 times. Sometimes I feel like I have to start over every time he comes out here. The first few days are usually bad, until we sort of get into a groove with each other. But at least I can talk to him about things. At least I don't feel like I'll be kicked out if my kids make too much noise or if I have an opinion he doesn't agree with.

When I worked at 'big university" on "big, grant-funded projects about disability issues," a coworker of mine who has a spinal cord injury worked on a project dealing with abuse and disability. The project worked to broaden the policies about the definitions of caregiver/family abuse for disabled populations. There was the obvious stuff, like physical and sexual abuse, stealing money from the disabled person, neglect, things like that. But then they found thousands of people that were being abused in these subtle ways. Things like changing the person's medication without permission, or withholding it or food or care unless the disabled person acted a certain way that the caregiver/family member wanted them to act. All these disabled people said over and over again in this research that they couldn't express opinions, make choices, take calculated risks in their lives, have freedom of speech, religion, etc. for fear that the caregiver would take away support. People couldn't get their caregivers to purchase certain political books or magazines that they didn't agree with, couldn't get them to help them into a certain church they didn't agree with, couldn't get their caregivers to just listen to their choices and decisions regarding food, household organization, hygiene preferences, any and every little choice that you make everyday in your life, many people complained that their caregivers didn't honor those choices and directives. In Oregon, these types of situations can now be prosecuted as caregiver abuse. Many other states are also making policy changed to reflect this type of emotional abuse and are realizing the subtle ways that caregivers and family members use their power over vulnerable populations in this way.

Now obviously there is a lot of room for subjectiveness in these laws and most of these claims are taken on a case by case basis. This also does not mean that a caregiver just has to put up with whatever a disabled client throws at them. What it does mean, is that support has to be negotiated up front. If you don't want to work for a client that smokes, you say that up front. You don't bitch and moan every time the client lights up and threaten to leave the guy high and dry and walk off the job if you catch him with one more cigarette. Nor can you hide the cigarettes out of his reach or refuse to purchase them. If something comes up that you disagree with to the point that you no longer want to give support, then you have to give fair warning  and notice and also assist in finding a suitable replacement. The only exceptions for walking off the job or refusing care would be if you felt you or the client were in danger. But threatening to walk off the job or withhold care in a blackmail-ish type way because of the client's behavior or opinions is emotional abuse.

I'm not saying that what is going on with D would be considered a prosecutable abuse offense. I bet that the in-laws don't see this as something that they are intentionally making him feel. And who knows (cuz they never TALK ABOUT IT) how much of this is in D's head and how much of it is reality. He sees that they withdrew support from me, and they did to some extent, but I see it more as I withdrew from receiving support from them, because yes, it did appear to me to have a huge emotional price tag attached that I was no longer willing to pay. As I look back, the assistance I received was given on false pretenses. I thought for the most part, it was given voluntarily to make my life easier because I was going through a tough time. The assistance was given during a two year period in which I worked three jobs and saw D through a serious illness, and then the illness and death of my mother. I thought the assistance was given in the spirit in which you might bring food to someone after a funeral. You do it to show you care by attempting to make their life a little easier, not because you have so little faith in them that you think they won't eat without your help. It turns out, that I wasn't given the assistance out of care and concern to make my life easier, but out of some kind of warped obligation and complete lack of confidence that I could handle my life (and more importantly, D's life) with any sort of success. It was not given out of love but out of fear that I would screw up (D's) life. They used us and our needs for their own purposes, and then made it right in their minds by showing so little faith in our own abilities to set themselves up as martyrs to friends and others by taking us on as their burdens. The difference between me and D is, I had ample opportunities to make my own way and negotiate my own help with others on fair terms, and this was just an unfortunate isolated incidence for me. A colossal misunderstanding as to what was going down on my part. And it was fairly easy for me to just not accept the help anymore and find other ways to get things done. But sad, too, because it seemed that my ability to go off on my own was so threatening that they no longer wanted to have a relationship with me. (Oh, and also because I'm bitchy.) They only wanted to deal with me when I was percieved as the powerless one in need of their charity. It is a bit more complicated for D, because for one, he just needs more 'man-hours' of assistance than I do. I think that when you do need a lot of man-hours of assistance than you should try to reciprocate as much as possible, but if it is impossible to reciprocate in a truly equitable fashion, then you have the right to expect that people should respect you enough to knowingly volunteer their services without manipulative strings attached. For D, he's never had a chance to gain enough faith and confidence in himself and his abilities to find and negotiate reciprocal and committed and fair voluntary support from a variety of sources. He has never gained that faith in himself because he's lived with forever what I just had a small two year taste of. And believe me, it is not a desirable situation to be stuffed by someone else in their pretend box of your incompetence and limitations.

So, I don't know what the deal is for sure, and how the best way is for D to come to terms with this. I think that part of it is that he needs to rise above his family's perceptions of him and be who he is and own his own stuff, good and bad. I just try to keep encouraging him to be true to himself and say what he feels and let the chips fall where they are going to. He doesn't quite trust this yet, but there are other ways to get what he needs that have nothing to do with family. I always have a plan B, C, and D.

But this is what I want to say about this, because it is a gray, murky issue. If you are ever in a situation where you hold the physical, emotional, and/or financial power in a relationship, you have to first admit that power and recognize it. Obviously if you are a parent, you know this type of control and you know how easy it would be to use the power for less than loving purposes. If you want your child to sit still at dinner, you can either work with him in nonviolent ways by setting limits and consequences for his behavior, or you could physically restrain him to the chair or physically abuse him if he disobeyed. You (hopefully) make a choice not to use your physical power over him inappropriately. As he grows older, you also have to find ways to relinquish your emotional and financial power over him by purposefully giving him the tools and freedom to become his own person. If you are in a relationship where you are the main breadwinner, or you are the larger, more physically powerful person,you have to come to terms with that power and not use it against the other person inappropriately. You and the person you hold that power over have to fess up to it and be willing to discuss it in terms that are nonthreatening and show that neither of you is going to intentionally use that power in an unfair way. Second, you have to learn to ask yourself at every opportunity if you are using it in anyway to your advantage. I am talking about looking at everything you do on a daily basis. This means getting into the habit of looking at that relationship in a way where you purposefully give up power.

Here is an example. My sister was always getting on my mom's ass about stuff she bought, how she decorated the house, how she used her money, things like that. My sister is very opinionated (Even more than me, if you can believe it.) and she's also a tight ass CPA (if you've ever known the type). When my mom was healthy, independent, and could make her own decisions, I didn't worry about it. My mom listened to her sometimes, and other times would not listen to her and do whatever the hell she wanted. She had that power. Then, when my mother got sick, my sister still was very opinionated about what my mother should be doing. It was still things like the clothes my mother bought, what she wanted from the grocery store, and then more important things like which medications she should be taking. My sister's behavior didn't change, but the power differential did. My sister became my mother's primary caregiver, and my mother could no longer drive and shop for herself, make her own food, walk, go off and do what she wanted despite what my sister thought. She was at the mercy of my sister's opinions. I had tried to make my sister understand that she had to give up power because my mother didn't have the same power and the power differential was putting my mother in a vulnerable and fearful position. My sister would blame it on the brain tumor, but my mother became fearful of my sister in a way that I recognized, because I have been in that fearful, vulnerable position with her before, and I have no brain tumor. I don't think my sister intended to strike fear in my mother's heart, but she did. Because she did not recognize that she needed to actively give up power and control in order for my mother to feel safe. And no, this doesn't mean that she should have let my mother go out and impulse buy a PT Cruiser (my mom became very suggestive to advertising near the end of her life), but maybe this means that you let her buy the expensive Dove bars instead of the cheaper ice cream sandwiches, yes? It is a fine line, but what it requires most is thought and sensitivity.

I'll note here that all these same rules apply if a person has a cognitive disability and part of your job is to support the person's decision making process. It is much harder to find that balance and takes a lot of up front negotiation. I think it takes specific training and skills to work with clients with cognitive disabilities in a way that helps them with decision making while still respecting their self-determination, but it can be done. I've seen it done, and done well, many times.

So, I'm sorry D feels this way and has felt this way for years about his family. I've only been able to look at my own self, and tried to modify my behavior by actively giving up power and control to him, even if that means I apparently and semi-unknowingly watched while he let his foot get chopped off. When I work for him, I'm working for him and he is my boss. We have agreed upon parameters for my work, and he tells me what to do. I may have a suggestion here or there, but the final decision is up to him. And as much as humanly possible, I keep whatever is going on in our personal lives out of the time when I am working for him. I'm not always perfect at this, because our lives intertwine so much, which is why I've always been very supportive of other attendants coming in. But we always try to be open about it and talk about it. If he feels that I'm letting personal issues get in the way of the job I've agreed to do, he lets me know.

It is very hard to have a personal, familial relationship with someone you are providing long-term care to. That is why I feel it is so important to also have a straight up employee, someone you can boss around and have strictly professional boundaries with. (This is another reason why nursing home situations are often abusive. The patient has no power over his own care, a corporation does.) A deaf-blind woman I met once who had her own electrician business told me that she needs both family and professional caregivers. The caregivers show up on time and do what they are told and don't bullshit around, they can be fired. But the family was there for 3:00 am emergencies and she couldn't expect that of her hired help. I think this is ideal. But, if family members cannot recognize the power differential and actively set aside personal issues when it comes to providing support, then they shouldn't be providing support at all. It is a hard thing to find a balance with, but a situation where a quadriplegic is afraid to talk about his children for fear of repercussions resulting in abandonment of care is just rather tragic.

UPDATE: A very nice person who asked not to be identified sent me several links on emotional abuse from various sources such as the APA. She sent me several links defining emotional abuse such as this excerpt below (via), which she asked me to share with D. So, I have shared with D, and now will share with y'all. Knowledge is Power, baby.

Aggressive abuse can also take a more indirect form and may even be disguised and "helping." Criticizing, advising, offering solutions, analyzing, proving, and questioning another person may be a sincere attempt to help. In some instances however, these behaviors may be an attempt to belittle, control, or demean rather than help. The underlying judgmental "I know best" tone the abuser takes in these situations is inappropriate and creates unequal footing in peer relationships.

Denying

• Invalidating seeks to distort or undermine the recipient's perceptions of their world. Invalidating occurs when the abuser refuses or fails to acknowledge reality. For example, if the recipient confronts the abuser about an incident of name calling, the abuser may insist, "I never said that," "I don't know what you're talking about," etc.
• Withholding is another form of denying, Withholding includes refusing to listen, refusing to communicate, and emotionally withdrawing as punishment. This is sometimes called the "silent treatment."
• Countering occurs when the abuser views the recipient as an extension of themselves and denies any viewpoints or feelings which differ from their own.

Minimizing

• Minimizing is a less extreme form of denial. When minimizing, the abuser may not deny that a particular event occurred, but they question the recipient's emotional experience or reaction to an event. Statements such as "You're too sensitive," "You're exaggerating," or "You're blowing this out of proportion" all suggest that the recipient's emotions and perceptions are faulty and not be trusted.
• Trivializing, which occurs when the abuser suggests that what you have done or communicated is inconsequential or unimportant, is a more subtle form of minimizing.

Denying and minimizing can be particularly damaging. In addition to lowering self-esteem and creating conflict, the invalidation of reality, feelings, and experiences can eventually lead you to question and mistrust your own perceptions and emotional experience.

Okay, when I look at these definitions, I can say that we ALL probably have done some of these things sometimes to others in our lives. Hopefully we monitor ourselves enough to catch ourselves and correct our behavior and make amends before it goes on too long. I think it becomes emotionally abusive when a) it is a chronic, long term pattern of behavior; b) there is a power differential as I've discussed above; and c) the abuser never checks their behavior, admits to wrongdoing, or gives the abusee any sort of recourse to discuss how the abuse is affecting them.

Naim and the IV Pole

D sent me these pictures today off of his cell phone. And as you can see they are cell phone quality, but I still thought they were kind of cute.

Odds & Ends

There has been a couple of little developments the last few days.

First of all, D is now tubeless. He is off IV antibiotics and off the wound VAC. His wound still has a few more weeks to go before he can really get back to doing any activity. So, we have talked about him going back to the rehab hospital for a couple of weeks, but the doctor doesn't want him to do rehab for one more month. So, does he stay another month in the nursing home? Or does he come home and sit in his room for another month? That is the question. He still needs twice a day wound redressing, and someone (most likely me and his father) would still have to be there most all the time and bring him food and what not. But I don't think he really wants to sit in the nursing home for another month, either. The rehab hospital is a much happier, cheerier place where he would be busy rehabing, so that's a good thing to have happen. And also, maybe this time (big eye roll) they can accomplish what they failed to accomplish last summer when he was there for a month, which is get him a new chair and bed that will help prevent pressure sores in the first place (even bigger eye roll). It is a big insurance hassle (biggest eye roll in the universe), but that is what rehab is supposed to help you DO, get your durable medical equipment, so it would be nice if they could, you know, DO IT. In 2002, when I sat with him in a rehab hospital as he tried out new tilt-n-space wheelchairs and new mattresses, we decided he needed these items, and here we are 4 years later and 2 major hospitalizations later and still no progress there. So, I'm not getting my fingers crossed, but one can dream.

Also today, I made the kids their last two cans of formula. I've been making 2 cans of Enfamil w/lipil formula every single day for the last 15 months. We are not quite done with formula, yet, though. Now WIC has given us 6 canisters of the Enfamil Next Step Formula in powder form. (WIC always gave us the other formula in concentrated can form. It's more expensive, so I'm not sure why.) So we'll do that formula for the next month or two, then we will finally be on whole milk. So it is a mini graduation, I guess. But I will still be mixing formula a bit longer.

WIC is interesting in how concerned they are over my kids and nutrition. After the initial scary month after their birth of (mostly Naim) not eating and going under 4 1/2 pounds, they've been steadily gaining weight and for the most part have been following the growth chart at about the 10th to 25th percentile. Except for a few days here and there when they've had colds, they always eat well. The pediatrician has never been concerned about their weight and told me I could get them off formula at nine months. But WIC kept insisting that they stay on formula, so here we are at 15 months and still have a couple more months to go. Sometimes I wonder if I'm a needed statistic for grant funding purposes. If so, so be it. I get free formula. Besides, WIC scares me more than my pediatrician. My pediatrician just looks upon all of us as a curious circus act and then goes on to his next patient. The WIC ladies have that custodial social services aura about them that makes me nervous. They are all in that building with child protective services and so I always do exactly whatever they say. When you are a disabled parent, it is always a factor and you have to be very, very careful about these things.

So I've been extremely slow moving and cautious about eating issues. The kids are still on formula, still use bottles twice a day and sippies the rest of the time, we are doing more and more table food every day, but I still supplement with pureed baby foods. But I'm starting to discover the great thing about them eating a whole meal of finger foods is that they will sit there perfectly content and involved in eating for like an HOUR, one little pea at a time. Greatest thing EVAH! I know that I could push them faster on eating, especially Naim because he is all into eating by himself, but I don't want to risk going in to that office and having my kids drop weight, or even not gain the expected amount. It ALWAYS comes back to disability in other people's minds.

I think the bottles will be gone after we get on whole milk. I'm going to do it cold turkey. (Well, sort of, we've been weaning bottles for months now. By that time, I'm sure all that is left will be the bedtime bottle.) It is a bit sad, though to think of getting rid of the bedtime bottle. By then they will surely be walking and with no bedtime bottle, babyhood will be officially over. It's kind of sad, for me. But probably not for them.

Speaking of walking, I KNOW that my kids are 15 months old and aren't really walking yet and that your kids walked at 11 months or nine months or at three days old. Congratulations for you. You being all the people who give me that little look when they say, "oh, you must be starting to have to run after them now that they are walking." and when I tell them that they aren't walking yet, they get all like, "oh, I'm so sorry. My kid walked from the womb right out the birth canal." I'm really just not that concerned about it. If they weren't bearing weight or weren't working through all the gross motor skills stages, then I would be, but they are doing all the things kids do before they walk, except walk. Naim is obsessed with walking now. He drives me nuts. He always wants me to hold his hand, (just one) and walk and walk and walk and walk....and turn around and walk some more. For him it's just a confidence issue. I can tell he really wants to do it, he's just not quite ready. Yesterday at the nursing home, he took D's (now unused) IV pole and walked up and down the hallway with it OVER AND OVER again. I think the other nurses and residents thought I was torturing him, but I couldn't get him to stop. It's all he wanted to do there. He looked like a little cancer patient. The IV pole was like three times his height and still had a empty bag and line hanging from it. I wanna buy one of those at Walmart or something. Then he can use that instead of me. He is sooo beyond push toy walkers at this point. Those are for babies.

Aaron rarely expresses any interest in walking, though he is an avid cruiser. When I do encourage him to walk with me, he is very well balanced and doesn't need much support. With him, it isn't so much a confidence issue as a motivational one. What's the purpose of walking? I'll walk when I"m damned well good and ready. (That will be probably about a day after Naim starts walking, because that is usually his motivation. If Naim can do it, then he wants to do it.)

It snowed today here, which is a rare thing that only happens one or two days a year if at all. I took them out into the snow last year on snow day, but they were so little. So this morning I took them out into the backyard one at a time and held them while big snowflakes landed on their faces and hands. It really didn't accumulate much on the ground at all, but it was pretty to watch in the air. This year they were all excited about it. They put their hands out to catch the flakes and would put their hands on their faces when snow landed there. I showed them how to stick your tongue out and catch a bit of snow and they liked that, although I think they didn't really catch much snow, just thought we were playing the stick out your tongue game. But they were both very curious and smiley. It was kind of fun.

In Honor of International Women's Day...

I'm going to help googlebomb Bill Napoli, in the same spirit as Rick Santorum, these godbags with secret fantasies that they enjoy describing just a wee bit too much to really be against them.

So:

Bill Napoli

napoli (not to be confused with the proper noun, which indicates the Italian city)
Function: verb
Inflected Form(s): napolied
Pronunciation: nA’poli

1. To brutalize and rape, sodomize as bad as you can possibly make it, a young, religious virgin woman who was saving herself for marriage. 2. To hella rape somebody.

Etymology: From State Senator Bill Napoli’s (R-SD) words on an acceptable description of rape that would merit an exemption from South Dakota’s abortion ban.

Via Link: Romance Novel Reviews - Smart Bitches: Come for the Dominican Bitches, Stay for the Man Titty.

So, Internets, Let's Talk About Body Image, Disability Animus, and My Legs

I got my hair chopped off today. I'll show you a picture later on, I left the dig cam at D's apartment. I don't love it. I don't think it is the most flattering haircut I've ever gotten, but I don't really care because my goal was not to love it. My goal was to meet my minimum daily requirement of daily hygiene, which is "At the very least, be clean and neat." I can't always be my usual stunningly beautiful picture of femininity. Especially since children. Ever tried taking a shower with two little boys pounding on the shower walls and taking all your tampons out of the closet and throwing them in the tub? (If you tell me to shut the door and leave them outside, you've never known the dangers of two 15 month olds who can get themselves stuck in a baby gate in under 15 seconds.) But wet hair in ponytail was not meeting my minimum daily hygiene requirement. And short, short boyish hair is. So. I like it for now. It'll probably last six months to a year before I say that I'm growing it out.

I'm also hoping that this will make it easier for me to work out at my gym. I really need to do this for several reasons. First, because I am an athlete. I'm not saying I'm a great athlete. But I've always been the sort of sporty type (as long as it didn't involve sports with round objects hurled in my general direction), and I don't feel good unless I'm involved in something physical on a regular basis. Second, I'm overweight. And my pregnancy excuse (which really isn't that much of an excuse) doesn't work anymore. The kids are sleeping through the night. Near walking. Eating at normal human intervals. It's time to get back to doing some things for me. Which brings me to thirdly, I need a break from these kids sometimes. There is no husband or babysitter or grandparents to take them even for an hour or so. It is me and kids 24/7. I feed them every meal, I change every diaper, I give every bath, I read every book. With the exception of the church nursery. Its all me, all the time. I get a two hour maximum a day of cheap daycare at my gym. And I want my two hours, even if it means I'm slugging it out on a treadmill. I wanna sweat. And sweat without children crawling all over me as the cause.

For the record, I was planning all this before the following occurred. But check out the following:

I check my blog stats this evening, and I find that hundreds of people have linked to my site from a Michelle Kwan Message Board and a board called Figure Skating Universe. My post about figure skating has been picked up and making its way around these boards. (Which means if she hasn't already, my sister has now found my site. So, Hello! Sister!). So I click through to the messages about my post, and I find this:

I got to be honest about this......

In general I have nothing but admiration for people who over-come adversities, on big scale or personal level, and follow their dreams and desires. My favorite b-day wish that comes from the heart to all my friends "I will not wish you my wishes or what is standrad to wish for a b-day, may your own wishes and dreams come true, and you don't even have to announce them".

But with all this respect and admiration for her accomplishments and "we shall overcome"...... I DON'T NEED TO SEE HER FAT WHITE LEGS!

Why is she posting these fotos? She had a visual imperiment...... She does not see them as clearly as we do....... So why is she puttin it in public's face? We're all intelligent enough to imagine what shape a body can take for a person in her situation.... Do we need to "see it"?

We don't! This is just her own self-gratification, as in "come in roll in the same shit i roll in". This is a very common tactic for "les miserables"..... but it's not a fair one to regular people.

I don't quite get the need for the "blogs" and "live journals" and "my-space"..... Don't these people have friends and relatives they can speak with and talk to? (and show them "anatomy fotos" and share "emotions"?).

I love her story, but I don't need the "grotesque" of her condition in details and fotos..... (my great uncle has a tatoo from A-witch, no slightly disabled woman strugling to figure-skate will top that).

I was at a party few days ago, and a very wonderful (in all aspects) woman, who had a breast cancer, decided to "show" the result of her condition. She opened her shirt to a bunch of us, and displayed the section where her breast was removed....... Bon appetit!

I can relate to any such story..... I don't need grotesque. I know what the "stuff" looks like, breast cancer, body going out of shape as a result of an injury..... I don't need to see it.

To which I reply (although I probably should have let it go, but y'all know I can't let things go):

Oh, I know I shouldn't reply to this, but...

---

Hi! It's me! The one who wrote that post on my blog. I actually do read this message board sometimes, and logged in special today, just for Tinami.(sp?) I was looking at my blog stats and found quite a few links from here so came and checked it out and about did a spit-take with my tea when I read about my Fat White Legs! Yeesh! I'm not actually that offended (well, maybe just a little...sniff, sniff.) But wanted to just say this:

The picture was meant to be kind of Mary Katherine Gallagher geeky. Here I was prancing around in a nightshirt and skates on carpet at 1 in the morning. I'm admittedly a geeky kinda girl. I'm a part Irish girl from Oregon, so we are white, white, white but at least we don't get as much skin cancer here. Also, despite being blind, I have a pretty realistic body image. I am 5'5" and a good, live-able weight for me is about 135 and I need to lose about 30 pounds so you do the math. So I freely admit that I'm a bit overweight right now.

But all that is neither here nor there. What I found really strange about Tinami's comment was that she attributed my white fat legs to being blind. As if they were somehow grotesquely deformed due to the fact that blindness contorts your body in some abnormal way that doesn't affect "regular people" like her. Hey, I have the same problem as millions of women. I am 35 years old. I am the mother of one year old twins. I gained weight during my pregnancy, and then when the twins came I did not eat as well as I should have and did not exercise as much as I should have. I have not lost my pregnancy weight yet, and I have no excuse but that I'm just a busy mom who hasn't integrated enough good nutrition and exercise into her schedule yet. Happens to many of us.

Blindness actually made me more fit, as I walked an awful lot since I don't drive. Often I walked between three to six miles a day running back and forth to stores and work and bus stops. Also, as I said, I have not been able to skate since I have been pregnant. I hope to get back into it a bit when the kids are a little older.

My point is, I may not have killer model legs, but I am not showing off a grotesque deformity that came about because of my disability. Give me a break! This Tinami person must be very insecure and be very bigoted against disabled people.

There is no "les miserables" or roll in my unfortunateness or whatever she said. I'm basically a happy mom of two who is a skating fan and sometimes recreational skater. This must be some kind of misery that she is projecting from her own life.

I thank everyone who said nice things about me and the post. I wrote it to show that joy of skating goes beyond gold medals and to share my personal experiences and love for it. If you've ever thought about skating as an adult but were inhibited by all the cute little eight year olds doing double jumps, there is a wealth of opportunities for adults to have fun as well. Most rinks have an adult group, you just have to find the right day and time that they show up. So even if you have fat white legs like me, put on a pair of sweats and skates and go have fun. Who cares what people like Tinami think?

And, btw, I'd probably be the one showing off my lumpectomy too, if I had cancer. There is nothing ugly or grotesque about surviving cancer.

Back to occasionally lurking now!

So, to be clear, I'm not so much upset that she said my legs were white and fat. I knew it was not a very complimentary picture of my legs but really wasn't hung up on portraying myself to be perfect at every angle. I'm upset that she related it so strongly to her discomfort about disability. If she saw the same picture, but didn't know I was disabled, what would she have seen. Maybe she just would have said, "Dude! Nice fat white legs!" and left it at that. Or she might have not said anything. This is an example (although not the most severe or extreme example) of disability animus.

Animus is a legal term meaning, basically, hate. It is important in discrimination cases because many times the defense is that "I just didn't know any better. I'm just ignorant." If you can prove Animus, or the intentional discrimination of a particular group due to disdain or hate for that group, you can win your case. Disability cases are very hard to prove because there is this perception that "no one is against the disabled. No one hates them, we just don't know any better."

Many people do have good intentions toward people with disabilities and do or say stupid things because they don't know any better and are open to learning to be more accepting. Then there are people who are stealth discriminators. Clint Eastwood comes to mind, here. These are people who are very polite and don't say anything against the disabled and claim ignorance, but they claim it again and again and again for years and years. They are choosing to be ignorant. They are purposefully avoiding becoming educated because secretly, they hold animus and disdain towards a particular group. In Eastwood's case, he failed to provide accessible entrances to his California resort hotels. The first time he was sited, he said he didn't know the law applied to his hotels because he didn't think anyone in a wheelchair would ever come to his resorts. (Good way to get them not to come is to not let them in the front door.) The next several times he was sited, he said he didn't know. He was sued, and lost. Then, he went to Congress with a bill that would allow businesses a 90 day grace period to become accessible if a disability person filed a claim against them. The problem there is that the laws have been in effect for 16 years now. Businesses already had a two year grace period to get accessible. If a disabled person is denied access because a business hasn't implemented 16 year old codes, why should the business get an additional 90 days? The crime has already been committed. Its like giving a 90 day grace period to a shoplifter to bring back the product whenever they get around to it. Or, if someone was injured in a fire because a business didn't follow the fire codes, don't compensate the victim, just give the business 90 days to comply with the fire codes. Anyway, then there was that whole "Million Dollar Baby" movie which pissed everyone off because he killed off a quad...but I digress.

Anyway, then there is outright hatred that disabled people are subjected to on a daily basis. This is many times based on appearances. Contrary to what the above troll might think, I usually get off on this one because I 'pass' many times as nondisabled. But I've been with many people who didn't meet the glossy vogue pages of body image, and the abuse they take is sometimes very severe and very frequent.

I used to have a boss with cerebral palsy. He used a wheelchair, had slurred speech, and could not feed himself. Part of my job was to assist him on business trips. He had a Ph.D. He had been called "the Grandfather of Self-determination," and worked in Washington with some higher ups in the Department of Health and Human services. He had a pretty likable personality (even though he often got on my nerves.) And he was not a bad looking guy. He looked like he had CP is all.

I can't tell you the amount of abuse this guy took from strangers in airports and at restaurants. People would call out to him that he was a 'retard' and would say things like 'If you can't walk on the plane like a normal person, you shouldn't be riding, you fucking crip." Once I was asked to remove him from a restaurant because he was 'really disturbing to the other customers who couldn't enjoy their meal because they were nauseated by the sight of him." I always called him Dr. X in public, or professor. "Can he have more tea?" says the waitress. "I don't know. Dr. X, she doesn't seem to know how to ask you if you want more tea," I would say.

Another time I was in our nation's capital with a group of leaders from a self-advocacy group for people with cognitive disabilities. This one guy wanted to stop in a convenience store and pick up some magazines. He had a Down syndrome look about him, but was perfectly able to communicate on his own. I was not babysitting him. I was just there. I wasn't paying any attention when I heard, "You f-ing retard! You can't buy all these n*de magazines! Whose responsible for you? HEY!! Whose here with the retard? Come get this guy somebody!" So I walk over there, with my guide dog and I'm like, "I'm not responsible for him, but is there a problem?" And he said this: "Aww, shit! What are you? Blind? Isn't there anyone normal in here with this guy? He can't buy all these magazines! That's sick!" (It turns out, the guy was buying a bunch of pl*yb*y's for some friends of his that were living in a group home and didn't want to buy the mags with their female PCA.) I said that he has every right to buy them and did he make judgments and refuse every customer that came in to buy those particular magazines? This guy told me something to the effect that I should f*ck his retard ass since I couldn't see him anyway, and then some other guy customers started laughing and joining in. At that point, we decided to leave because we no longer felt safe.

This incident was pretty hideous and severe, but not uncommon. I sometimes am glad that D is such an introvert and has mostly managed to work at home because he has been spared a lot of the stuff that I have witnessed others with disabilities endure. People have asked me to not bring him to social functions because he looks too disabled (and again, I've been 'lucky' enough not to 'look blind'".) It cramps their precious clubbing style. Of course, that pretty much ruins that social contact for me as well.

Again, most people are not like this. But it happens often enough to make you fear for your safety, suspicious of how strangers are going to react, and cautious in all of your social dealings. Many times people with developmental disabilities are not given the opportunity to live independently because of this issue. The developmentally disabled are especially vulnerable to violent crime. We look at this as if something is wrong with them, but we really should be looking at this as something is wrong with society.

I truly believe that one of the greatest motivators that keeps institutionalization healthy and thriving, despite its higher costs, is because of hatred for disabled people. People don't want to look at them, they don't want to see what they consider the ugliness, the grotesqueness of the disabled body or mind. They want disabled people out of their sight. I think it is interesting that a society that has desensitized itself to graphic violence to the point that it is sought after and an accepted form of entertainment can find innocent valuable people to be so repulsive that they need to be imprisoned.

The magazine, "New Mobility" has an issue that comes out every February called "Sex, Wheels, and Relationships" that is about disability and sexuality. Every year they have partially nude disabled people on the cover. (The nudity is no worse than say, Demi Moore or Britney Spears on Vanity Fair covers. See this article for this year's cover shot.) Every year, they get so many protests from newsstand owners and other vendors that they've had to wrap that issue in a discrete cover.

The disabled are not allowed to show affection or sexual desire, not allowed to eat in restaurants where we will cause the other patrons to become ill at the sight of us, not allowed to buy sexually explicit magazines or even think of sex, and god forbid, not allowed to show a little leg.