Twinkle Little Star

Proofs

This went better than last year, but still a challenge. It will be nice when I can say, "Sit there and smile, kids." And although these pictures are nice (and also better than last year's Babies R Us photos), Sears Portrait Studio held these pictures for ransom and kept me there for 3 hours waiting...waiting...waiting for them to put them up on computer that I knew I would hardly be able to see until I bought something. (I was planning to buy, but I was trying to convince them that making me purchase pics of proofs I could barely see from a computer screen was unfair and why can't I take them home and order later? I even offered to put down a deposit of some kind to be able to do this. But NO. They'd rather kidnap me and my dirty diapered, tired, crying and hungry children until I decided what to buy based on absolutely nothing but one goofy salesgirl's opinion. The same salesgirl, who, when I inquired as to whether a particular picture could be flipped so my kid was facing the reverse direction, said, "Oh, you don't want to do that. The other side of the tricycle has a missing pedal." Um, yeah. And I'm supposed to trust her to pick out pictures of my kids? Oh? Am I still writing in parenthesis? I am. I'll stop now and let you see the pics.)

I was going for an old-timey depression era farmboy look that was just begging to be sepia-ed. I was also looking for props the kids would be interested in playing with to relax them and distract them from the crazy, shrill faux sneezing lady that was snapping bright lights at them. In between some tears, we got these:

Aaron

Naim

Aaron

And one more try at getting both to look the right direction and smile...

...Can't be done. But I'm not a big fan of pictures where everyone just poses and looks at the camera with a big fake smile. Indigo girl had some beautiful pictures of her twin girls done that I was completely jealous of (they are password protected, so you'll have to trust me on that) but the photographer had them outside at a park, I think, and just took shots of them doing the natural stuff kids do. I might have to splurge for a real photographer next year, if possible.

We interupt this very noncommital break...

Today I went to an all day workshop at my church for the Sunday school teachers. I'm gearing up to go back to church for the new year after taking most of the summer off.

I have decided that my issues with the church need to be handled more as a marathon rather than a sprint. I've done next to nothing to pursue any of the issues regarding disability in the church and I don't plan to for a while. I think that there are good people in the church and the church as a whole tries to do its best to meet its mission to include all people. But, like probably any church...it is not perfect and it can be clique-ish and doesn't like to be told it might need to think a few things through. I think that I can't go around bitching about it before I have any clout or they even hardly know me or have any investment in my family to care all that much about my issues. So, I'm just trying to do all the right things and keep trying and be nice to everyone and maybe later, when things naturally come up, I will try to express some of my opinions on the matters that trouble me.

Which means that I will sit on my hands and duct tape my mouth and not do anything about the thing that irked me today. But of course, I will blog about it so I don't explode. I've got my limits, right?

Most of the day was great. Nice people. Positive attitudes. Everyone means well and wants to do the best for the kids in the education program. It was just at the end of the day when a special ed teacher did a presentation on special needs. Afterwards, I walked out of the church thinking, that kind of stuff was exactly why I left special ed.

First of all, I think the woman that did the presentation is a very nice person who had the best of intentions and is very knowledgeable about the topics in which she spoke. I do have a lot of respect for her as a professional teacher and as a mother and a person. I want to stress that I don't think what she did was awful or intentionally harmful, I just think it was a bit misguided and I just have a different perspective on the whole deal. I think she missed a great opportunity to give us all some real information on how to make the classes more welcoming for ALL the kids.

So basically, what she did was a little power point presentation on special needs kids and gave us some articles to read that supported her presentation. Her talk was divided into basically three categories, kids with Asperger's/Autism Spectrum Disorders, kids with ADHD, and adoption as a special need. (I'll note here that she has children who fit into each of these categories. I don't blame her at all for wanting to raise awareness for the teachers that will be working directly with her kids. Sometimes I wish I could preach a sermon so people would understand the whole complex deal that is D's life right now rather than asking me if he is okay and then giving me strange looks and changing the subject when I tell them, "He's fine, but he is on bed rest and I'm really not sure what the answer is for getting him healthy again. But, anyway...)

So, I have a problem with special ed labels. Especially the more fluid and special ed professional made up ones like ADHD and Asperger's. Now, let me make it clear that I do think there are kids that exhibit the kinds of behaviors that professionals use to define them as ADHD or Aspergers or LD or whatever. I'm not saying that these kids don't have issues that need to be addressed. And maybe, as we learn more about the brain and the environment's effects on it, we will learn that some kids have real, organic biological or environmentally induced differences in their brain makeup. So, don't email me and bitch because your kid has an LD and I'm saying it isn't real. That isn't what I'm saying. Your kid is your kid and he has these certain characteristics that he has. I believe you. And sometimes these characteristics require real intervention. I'm okay with that.

My thing with labels in special ed is that people don't get that they are these imaginary and quite movable lines in the sand that are made up by some folks who design an assessment tool or sit around in meetings and decide what makes a kid have a certain thing. Most aren't concrete medical diagnoses that can be shown by a blood test or some such quantitative data point. Special ed teachers are in a difficult position and they use the only tools they have, labeling, to help the kids who need help. I do think they mean well. But they are working within a system that doesn't work for all kids. Regular ed teachers are overworked assembly line workers that have to keep the machine moving. When a kid, for whatever reason, clogs up or slows down the mechanism, the only recourse regular ed teachers have is to send them for a special ed evaluation. Then the special ed teacher sees a kid that needs some specific help and knows he is not going to be able to get that in the regular ed assembly line, so the only option to get that kid the help they need is to diagnose them with something. Since classes have gotten larger and the assembly line has been more strained, new diagnoses needed to pick up the slack. LD, then ADHD and others came around. Instead of blaming the system and fixing it, it is easier to blame the child as having the problem within. Then the child is pulled out (even if included in the classroom) as "different" or "special."

Now, again...I'm not saying there aren't kids with disabilities and needs that are real. My blindness and deafness is real, obvious, and quantifiable. Other kids issues might be less quantifiable and less obvious than mine, but still very real. What you need to look at, though, is how to meet their needs functionally in the classroom. It isn't so important that a teacher know my visual and auditory acuity and all the cookbook handouts about "Characteristics of a DeafBlind Person," which I guarantee will only apply about one percent of the  deafblind population. It is more important that they know how to make the material functional for me. That means that I need information in multi-modal ways. Visually, auditorally, tactually, kinesthetically. I'm saying that ALL kids have different needs and learning styles. None of them are "special" unless all of them are. Now, if you think of kids' learning styles being on a set of continuums (continui?), the middle chunk can be accommodated in the regular classroom and the extreme chunks fall off into special ed. The size of the middle chunk can expand or contract on a special ed teacher or school district's whim. (It often depends a lot on the budget, to be perfectly honest.) Or sort of on how society views normalcy. So these extremes are not necessarily "diseases" or "disorders," they are just kids who don't fit into the majority model of education as decided by educators.

Take my two kids, for example. They are a little young to determine what their learning styles and needs will end up being, but if they continue on the path they seem to be on, I can predict a few things. Aaron could be a model student. He likes to sit and read books and color. He likes to communicate with me and is very motivated by my approval. He is a visual/auditory learner. He has that classic "mastery" style of learning that is a teacher's dream come true. Aaron would likely have no problem sitting in a classroom most of the day and working from textbooks and teacher lectures. Naim, on the other hand, is highly kinesthetic. The kid does not stop moving. He is not interested in reading the book, he is interested in manipulating the book. He isn't interested in coloring, he is interested in dropping all the crayons on the floor and picking them up. It took some doing for me to get Naim tell you that a picture of a ball is a ball, but he can tell you that the 3-D real ball is a ball. But only if he is interested in playing with it. Naim can be hyper and does not focus on any activity for too long. If Naim continues on this path, he will have trouble in school unless he gets a really good teacher who knows how to teach to his needs (or has time to). Naim is also very focused on organizing and arranging items. He can be very socially shy and withdrawn at first. He avoids eye contact. If I let it happen, I would not be surprised at all if Naim is diagnosed as ADHD and possibly even Asperger's by the first grade. Do I think he has ADHD or Autism spectrum? Not at all. I think he is harder for me to teach than Aaron. But, hey, I'm a thirty-six year old mom who likes it when I can just sit there and have Aaron bring me books. For Naim, I have to get up off my ass and roll around on the floor. A twenty-year old might not even notice the extra energy needed for Naim. So, just because I have a problem with the added work I have to put forth for him, doesn't mean he is doing it wrong. He is learning the way he learns best.

Because, if you work with Naim where he is, if you move around with him (which is exhausting), If you teach him colors by throwing the crayons in the container rather than using them to color, if you find real objects to match the book you are reading, If you let Naim become comfortable at his own pace, he can learn an exceptional amount. If you take the time to gain his trust, he can be quite the social ham. This is all teaching the child, not the subject. This is all about learning styles.

In grad school, the work of Howard Gardner and others was drilled into my  head. The idea being that the theory of having one IQ score is quite flawed. Instead, we have multiple intelligences. Gardner says there may be hundreds, but broadly defines eight. (Lets see if I can do these from memory since I'm too lazy to look it up.) Um...here goes: Visual Spatial, Mathmatics/logical, Linguistic, Musical, Kinesthetic, Interpersonal, Intrapersonal, Natural/Spiritual. Okay, those might not be exactly right, but you get the gist. The idea is, that everyone has higher and lower capacities for learning through each sort of modality in the brain. If you can tap into the right one, you can learn almost anything. For example, if you are good in music but struggle with math, you may be able to learn math concepts easier through music. Kids that do well in school are often highly intelligent linguistically and mathmatically. Most of the other intelligences are ignored. Alternatively, people most successful in the workplace have great interpersonal skills, even though they may lack some of the actual talents you would think they might need for a particular job. You can also matrix these with a lot of the work psychologists have done on personality types such as mastery, reflective, sensory, intuitive, etc. Public schools tend to teach to mastery learners (kids who like to recite facts and like concret absolute answers) than to kids who like to use knowledge in more creative synergistic ways.

So, what I would suggest to the woman that gave the presentation today (if I were going to open my big mouth and continue to be the girl that bitches about disability issues) is that she do a presentation about learning styles and how we as teachers can include all kids. There was nothing wrong or inaccurate in her presentation, it was just that she singled out two groups, ADHD kids and Autism Spectrum kids, to segregate as having special needs. Why not teach these volunteer teachers to have a myriad of strategies up their sleeves to teach to all kid's needs. I mean, we all know that our kids have days when they ACT like they are ADHD, or ACT a little asperger/autism spectrum-y and who could benefit from some of these strategies. Lets look at the functional implications for learning that all kids have and teach to them. Now if a parent comes up and says, my kid has trouble focusing and paying attention, these strategies help him. Great. Or, this kid is hearing impaired, so functionally in the classroom she needs visual modes of information. (Which, as we all know, will help all the kids. Those who are visual learners, those who have trouble focusing, and those who are just tired that day.) Strategies that focus on multiple ways to teach  a variety of different kinds of kids help everyone. There is not a huge need to single a group out as "Special" or "Disordered" or having a "Deficit."

The system of labeling kids for special ed purposes in the public schools is mostly a result of the fact that schools can't educate anyone outside of the fat bump in the middle of the bell curve. It doesn't so much indicate that there is a problem with the kid, just that the industrial, assembly line mechanism of the classroom has its limitations. Most special ed labels don't have any real practical application in real life after school. In fact, they mostly serve to limit opportunities rather than expand them. Do I know the answer to it all? No. My fantasy answer is that teachers would have no more than ten kids per classroom and would have them for multiple years so they could constantly improve to teach to each kid's needs and facilitate each child reaching his or her full potential. Of course, there would be adequate resources available to teach in creative and multi-modal ways as well, using the whole world as a classroom, not just a small box with a few outdated textbooks.

I don't expect that this teacher from today can, by herself, make that happen. She is still doing the special ed thing and should be commended for it. Probably doing her best to make the system better. I just wish that for our purposes in religious education, where we do have some opportunities to teach to students needs because of our small class size and flexibility, she would have focused on that strength rather than singling some students out who have "impairments" and are defective and have "special" needs.

Now, moving on to adoption as a special need. Hmmm. This is what really sent me over the edge with this presentation. Now, I fully support the idea that adoption brings with it certain issues for a child that are unique to the situation of being adopted. She gave out some good information regarding this. But I just wanted to say to her, "is this what you really want to do? Single out adoption as a special need? With all the connotations that come with that?" Do people need to be aware of the stuff that might come up for a kid who was adopted? Yes. Is it a special need in the common special ed-like definition of special need? A deviation from the norm? A deficit? No. She might not have intended for it to come off that way, but when you sandwich adoption as a special need in with Autism and ADHD, that is exactly what you are doing.

What adoption is, is a way of forming a family that is not the majority/mainstream way of forming a family. There are real issues that children of adoption potentially face. Everything from problems with attachment to interracial issues to medical issues and issues about who you are. The stuff kids from adoption face is so diverse and individualized, that again, singling them out for a little presentation on how adoption is a special need is kind again a situation where you are blaming the 'victim' rather than the real problem that society and possibly Sunday School teachers are unaware of some of the things that people who come from families formed in the minority face.

Again, I think of my kids. My kids don't fit into the label of adoption, but they have an adoptive father. My kids have Russian Jewish heritage from an unknown biological parent, and Slovak and Irish heritage from their known parents, but they don't fit into the label of minority children or trans-racial adoption. My kids have parents who live in separate households, but do not fit into the definition of children of divorce. My kids have disabled parents, but are not disabled themselves. My kids have a single mom, but also have a mom with a long standing relationship with their father. My kids don't fit in to any pre-existing "special needs" label (unless you count "at risk" which is a nice catch-all, cover-our-asses label), yet will undoubtedly face challenges unique to their situation. I sat there thinking, if she did this whole presentation about kids who come from gay/lesbian households and called them "special needs" kids, there would be hell to pay. Do kids from  gay/lesbian households have to deal with specific issues caused by the minority status of their family? Yes. But having to deal with , for example, explaining to your friend's parents that you have two moms while the parents stare at you in awkward confusion doesn't mean YOU have the 'special need' it means that the mainstream hasn't learned to deal with you yet. Can that be hard for you? Yes. Does it mean there is something wrong with you? No.

So again, I know she meant well. But rather than saying, "look at these poor kids who come from adoption who have these special problems," she would have done more good by saying to all of us something like: Look, we have all kinds of families in this church. Families from adoption, third party reproduction, trans-racial families, step-families, divorced families, single parent families, same sex families, etc. Each of these different scenarios may present unique issues for the kids involved. Here are some strategies to help you as teachers be inclusive and accepting of these kids and not add on to their burdens. First of all, Don't assume that the kids are going home to mom and dad. Don't assume the Asian looking kid was adopted from China. Don't assume the foster kid is all screwed up. Etc. I think rather than planting assumptions about adoptive kids in our heads, she could have worked to erase erroneous assumptions about all kids. The burden to accept these children for who they are (and help them accept themselves) is on us as adults. It is not to be put on them by labeling them "special needs."

Adoptive parents? Parents of kids labeled some such disability? What do you think? Am I (as usual) full o' shit? Would be interested in your feedback. Maybe by next year when I've taken over the world, I can do my own presentation on learning styles and diversity within families. Or not.

To Tide You Over...A Charmed Hour and a Haunted Song

I got all excited when finding this pretty rare old clip on YouTube. As some of you know, I'm a hideously insane Stevie Nicks fan. This is one of my favorite live performances ever. It is a song called "Angel" that Naim and I like to dance around to. He sings the words "Gooood" and "Meeee" and some others. At the end she says, "That girl was me" and he sings "Gah Wah MEEE!!" I'll get D to video it sometime so we can torture him with in when he is a teenager. It's funny. This song always puts me in a good mood. This clip is a section of some old documentary from, like, 1978. The live performance is at about 3:45 into it. But if you are a geeky-ass fangirl like me (or just a fan of platform boots), the whole thing is kinda interesting.

Oh, We're obsessing now. Here we have what happens when Stevie is loaded up on a boatload of cocaine. Oh, the good ole' days of my childhood. I remember watching this late at night while babysitting for the family with the good cable. Fascinating, she was. In honor of D who despite being bedridden for the past year has been dragged to more Fleetwood Mac Concerts than anyone from our generation should have to endure; if only so he can spend the whole night dissing Lindsey Buckingham. This is D's favorite clip of the night. (I quoth him, "What's she got there? Castinets?")

Meh.

I'm going to take a small blogging break for a bit. Everything is fine, but am thinking the site needs some rethinking and revamping and some thinning out of the good posts from the crap. See you soon.

A bunch of bureaucratic bullshit and otherwise dull things swimming around in my head.

Part 1 of my mad, mad master plan to take over the universe rejoin civilization as we commonly know it is now successfully completed.

My kids have their own lovely private health insurance policies.

I did the happy "my kids are insured and you can't tell me they aren't anymore" dance. So happy to be paying $210 in premiums (+ a $20 co-pay on office visits + a $500 deductible). So happy. But, hey, they also get dental that will even pay 50% of orthodontic work, which if they get mine and my sister's genes, they are going to probably have to partake in some trips to the ortho. (Me= braces twice and headgear. Sister=braces twice, chin cup thingamajig and some type of torturous palette separating device.)

So here is the  story of the (funny as in Ha Ha) health insurance debacle. I had to wait to tell you until after the kids were insured because that is the only way it would be funny. Otherwise, it was just bang-your-head-against-blunt-objects maddening.

If you go to this government website called Insure Kids Now!, it talks about a wonderful program called CHIP--Child Health Insurance Program. It talks about it not being a welfare or benefits program, but simply a way for parents who, for whatever reason, can't get their children insured on their own group policy (if they even have one) to get their kids insured. It talks about this wonderful plan where your children will be accepted for health insurance based on a sliding scale fee for premiums. It says even illegal aliens can qualify. You just have to be a working parent of uninsured kids.

Me! Me! I have my hand raised. Tell me where to sign up.

So, the kids have been on this program since I was pregnant. Supposedly. The truth of this program is this. It is a federal project funded through the SSA. Basically the feds give the states money to insure children however they see fit.

For me, this basically meant applying for Medicaid in my state, yet the money that covered my kids came from federal dollars, not state dollars. So on my end, it looked no different than Medicaid except that I had to pay a premium for Medicaid. What was my premium, you ask? Around $300 for both kids. Yes, notice this is more than I'm paying now. However, there was no deductible and no co-pay.

The irritating thing about it was that I had to reapply every six months. Fair enough, you say. But the way they did it was maddening for me. They don't let you reapply until the end of the last six month period. So, if my insurance ended June 30th, I cannot turn in an application until July 1st. Then, they have 45 days to process my application. So basically, even though when I am accepted they backtrack and insure me from July 1st, I basically go for almost 2 of every six months uninsured. This means that I cannot make an appointment at my pediatrician because they don't let you without an insurance card. (Medical emergencies are directed to the ER.) This is how we got behind on our immunizations. (We are only one behind now and should be able to catch up this year since immunizations are now slowing down.) Anyway, irritating.

Incidentally, I had looked into private insurance when I was pregnant, but I could not get underwritten with my health problems and with a high risk twin pregnancy. I was extremely fortunate to be able to take advantage of the CHIP program during my pregnancy because my insurance (Medicare + a BCBS Part F supplement) does not cover anything pregnancy related. So as maddening as it was, CHIP was the way to go for me then. I had been looking for private insurance again for the kids this year, but with Aaron's seizures, I was again having trouble getting him underwritten. Naim was fine, but Aaron was going to cost me about $600 bucks. And even some insurers wanted to put a bunch of exclusions on them both because they were preemies. I'd about given up and just decided to stay on CHIP, until...

CHIP decided at the last minute to cut me off. I'm talking telling me on Friday, July 28 that my kids will be uninsured after July 31st. There were three reasons why:

First of all, they do  in fact have an income guideline. It is exactly the same for Medicaid in this state. Poverty level. So much for the "working poor can get insurance for their kids" business. Apparently, the entire time I was on it, they calculated my version of Poverty Level wrong. See, I am a family of three. But I am one adult and two children. They calculated me using the income guidelines they use for two adults and one child. So, apparently, if you are two potentially working adults with just one wee child between you, you are allowed to make more money than if you are one working adult who has to support two children. You'd think this would work in my favor, but it doesn't. You get to make more money and stay insured if you are two adults and one child. This doesn't even make a bit of sense to me. Think about the poor single mom of two kids whose got to pay all that childcare as well. Stupid. So, I make too much money now. But if I were married and only had one kid, we'd still qualify. Luckily, unlike SSA which makes you pay anything they deem they overpaid you back even if they are at fault, CHIP is just going to "let this go" and not make me pay back all the money that they were billed for my medical expenses.

The second problem is that I received three months worth of paychecks in June. Well, not even three months worth, just three paychecks. Since D was in the nursing home most of January, all of February and March, and most of April, I did not get paid for those months. When he came out, he had to re-establish himself as eligible for home services. So I got a back pay check in June for partial checks in January and April, and a full check in May, and then my June check came in July. So, even though my income was $0 from January until June, the fact that I got paid a lot in June disqualifies me. I would not be eligible to even apply again until October.

Third, because of all the above, I now qualify for the FHIAP--Family Health Insurance Assistance Program. This is supposed to be the bridge program between Medicaid and private insurance. What you do is, you get medical insurance somehow, either through your employer or an individual plan, and then they pay part of the premium for you. Everyone told me that this was my ticket. This was where I should go. Well, here is the real deal: You cannot have more than $10,000 worth of assets, not counting your home and car. (They always let you have a car. Makes me want to go out and buy a couple and let them sit all cherry in my garage except that cars depreciate before they appreciate so that kind of doesn't work. Can't my computer count? My hearing aids? I depend on them as much as some people depend on their cars. But anyway...) You have to be between poverty level and 180% above poverty level. (Check.) AND/BUT you have to have not had health insurance the previous six months AND there is at least a twelve month waiting list before you can apply. So basically, to do this I would have to deplete my savings, sell my hearing aids or something and not have the kids insured for the entire next year. Um, no.

So, I applied for private in a mad rush last week. And, I had to make a tough decision. In order to get Aaron insured, I had to cancel his appointment at the neurologist, which was for Aug. 31st. And I had to check "no" on the box that said "Convulsions/Seizure Disorder/Epilepsy" on the thousand million page medical history form.  I did give them permission to obtain his medical records, so its not like they couldn't have found out. But I decided to play dumb. No, he doesn't have a seizure disorder, he had a seizure...okay, well, maybe two. No, he doesn't have epilepsy, I was told he just had febrile seizures. That isn't a disorder, right? Right. (It all depends on what your definition of "is" is. You know?) He does have a six month exclusion on preexistings, so I am hoping that we have no more seizures. And if we do, then I will ask for another referral to the neurologist, but it is just going to have to wait six months. It is a slight risk, but it was the only way to get him underwritten. He was just being rejected by every company up until I did that. Sue me, send me to jail, I really don't give a shit. I'm trying my best to do the right thing here. And I really don't think that his seizures are going to be a huge health problem. I really do think that they are febrile and manageable and that he will soon grow out of them.

But I'm glad I was able to do this now, because they are so young and so healthy that this is the time to get them on a policy before something serious comes up and they are deemed completely uninsurable. Here's hoping we go through life paying the premium and one little doctor's visit a year and nothing much else ever goes wrong.

So, now, I am free from most all of the benefits restrictions on me as far as earning income. I am off of WIC, I am off of Medicaid, I have a lot more freedom to work now. So this is very good and I'm so glad they got insured finally for a reasonable rate. Incidentally, even though I just found out this week that they were accepted, the policy was retro-dated to August 1st, and the kids have still never missed a day of being insured. I can now go back to worrying a little less that my dad is going to drop them on their heads.

So, as I said, this is step one in my PLAN. Step two is to go to the bank and divvy up all my, heh, massive amounts of money into four accounts. Each kid is going to get an account that I will put money in specifically for their needs, such as insurance premiums and the like. I'm not talking about groceries and such. But I need to separate out their money from my own. Anything that D gives us will go into there as well. Next, I am going to form an LLC for any money I earn above and beyond my personal salary, which is $1380 a month. Why is that my salary, you ask? Because that is what I am allowed to make and keep my SSDI. (Note here that this is the income limit for blind people; not otherwise disabled people. Yours is more in the $800 range, I think. Hey, we lobbied harder, bee-otch! But, consolation: We still don't get to make as much as the elderly. The AARP lobbied even harder than our sorry blind asses.)

Money that I can put into the LLC can be used to help the corporation keep running. For example, I can save money there and use it to buy myself new hearing aids or computer equipment, because since I AM the money maker in the corporation, I have to have these things for the corporation to continue. Also any direct business expenses such as phone calls, Internet access, paper, shipping, whatever, can be paid from what the corporation earns and not count against me, personally. And, if I'm lucky and can make enough money, I may be able to use part of it to.....

Buy my own place. Which is really, really what I want to do.

I won't say never, but I don't know if I will ever be able to get off of SSDI and its essential counterpart, Medicare. So, what I am trying to do is play by the rules but still work and earn as much as I can and be able to put some away for things I need such as hearing aids and housing and perhaps some savings for the kids and whatnot. But let me be clear, right now I am not even making over $1380. So this is all kind of moot at the moment, but sometimes when you are so used to not being allowed to work, you get better at trying to keep out of trouble by not making too much money than you do at working. I am trying to set it up so that I have the freedom to work and earn as much as I can without fear of loosing my health insurance or even a small SSDI income if I should get sick or more significantly disabled.

So setting this up is Part two. Then part three is the hard part. I want to entirely replace the income I get from being D's attendant with income I get from "real work." It isn't that being D's attendant isn't real work, because sometimes it is very tough and sometimes long hours and hours in the dead of night and things. But it is unpredictable and also very physically challenging at times but not really mentally challenging. I apparently went to school for way too many years and got way too much education so I could earn a living using my brain and getting paid lots more than $9/hr. for it. I'd like to go back to doing that. And then D will have my salary to use for someone else that he can boss around. I'm not very good at being bossed around. I will still help D out here and there, but I want that ball and chain of being his attendant off my back. No offense, D. But you know I'm a sucky attendant anyway. I go and chop off your foot when you're not looking and all that, doncha know.

So part three, figuring out how to earn a decent income, is going to be hard, but I am trying to free up everything so I can do it. I do have a lot of ideas. I just need to research which one is most workable and then commit to it.

Part four will be looking into what kind of house I can afford and where that might be. I like my neighborhood, but if I can only qualify for a $150,000 loan then I can't likely live here. I'm not opposed to moving somewhere with cheaper housing market. My problem has always been that where there is good public transportation, there is a unreasonably high cost of housing. It is because real estate is too expensive for people to even park their cars that the community invests in public transit. Places with lower real estate markets usually have little to no public transit. So it kind of sucks. But we'll see. I'll cross that bridge when I get there. I'm looking at a Fannie Mae program for people with disabilities with a low down payment and low interest rate loan. There are also some grants for the disabled that help cover things like closing costs, etc.

So that is the big PLAN. I think I really had to check out of the working world for a bit in order to have my children. I also was just so burnt out of everything at the time a couple of years ago that I needed a break. D was sick and I lost my hearing and my guide dog and some vision and my mom died and I had my own health problems and infertility and whatnot. So I don't regret that circumstances kind of forced me out of the workforce and at that exact moment, I was lucky enough to become pregnant. It was stressful, but a blessing in disguise partly. But I feel like I'm almost ready to get back into the world again. There is still the childcare problem, but that will only get better with time and I think I can at least do something now, even though I will probably not make more than $1380 for a while. Those kids really take up about ten solid hours a day. And that doesn't include stuff like housework and the other maintenance you have to do. Some of those hours are covered at the same time that I am working for D, so I'm lucky that way. But I do think I could push four or five hours of work a day in if I really set my mind to it. Of course, the house might start growing mold, but hell, I never hire a babysitter, maybe instead I'll hire a maid!

My father has gotten better. He always does. He is a horror for the first two weeks or so, and then he gets with the program and mellows out. He hasn't bitched about stupid stuff to me hardly at all in the last week or so. I still hear his bitching inside my head, though. If we could build on our relationship each visit and didn't have to start all over again each time with the bitching, I think we could get somewhere. I have a lot of emotional attachments to this house and this neighborhood. It is hard to think of leaving it. So, I'm just trying to take things as they come and make incremental improvements. That's pretty much all I can do right now.

I also wanted to say that I know I've written here and in the past very specific things about money and benefits and supposedly that is a big social faux pas and you are never supposed to admit to having any or needing any money or even--god forbid--talking about how much money you have or make. I've noticed this more among my more well-to-do friends than my more poorer friends. But nevertheless, I am writing about this because I've done a helluva lot of  research on how people with disabilities and people who are in health insurance prison might be able to make do in the world. I get emails from people with disabilities asking about this stuff quite often. So, I'm telling you what I know as I go along. So much of how I've learned to do things has been from learning from reading legal documents and official papers and/or from others with disabilities. It has NOT been from reading SSA brochures or consumer website or from talking to social workers so much. I've found that the absolute worst source of information on how to follow the bennie rules and to get off of them comes from social workers or representatives from the bennie organizations. And I've made mistakes, as you can see with the CHIP program. In any case, I'm imparting what I have learned and have experiences to anyone who can use it. I'm volunteering as your test case dummy. I am a disabled person who tries to work hard and follow the rules as much as possible and get what I need to get by and I do my best to do the right thing. I'm laying it out here to help others. If you want to share your experiences, even give me advice as to where my thinking is flawed, I'm okay with that. If you are going to email me and debate me on how a disabled person should not be living off the system, or should be living off the system...but doing so more quietly than I am or whatever else your gripe is about how society treats people like me and my response to it, I'm really not interested and probably will delete you. This is the only life I was given and the rules society has given me to live by. I'm just making the best of it same as you.

Collateral Damage

I haven't been able to write much because I've been spending time after the kid's go to bed at D's helping him because he is on bed rest. (My father is here with the kids when they are sleeping.) Also, I spent the last week dealing with an issue that just made me sick to my stomach and I was just not in the mood to write about it. Instead of writing about it I have managed to immerse myself in Degrassi:TNG marathons on noggin. (We only get the family channels, so I take what I can get.) Even a megadose of Degrassi hasn't cured me and I still don't want to write about it, but I'm going to tell you about it now, just in case you ever find yourself in a similar situation. You will be more informed than I was.

Some of you may remember that I briefly wrote about our cats. We had three. We got Kai three years ago from a non-profit no-kill shelter. Scrapper, our blind kitty, came from Kansas a couple of years ago. My sister and her neighbors put together an informal Capture/Neuter/Release program with the neighborhood feral cats. Scrapper was one of the kittens that they caught. Then, just last year at around Thanksgiving, we acquired the black cat that D named Zoe. He just appeared in the corner of D's porch, sick and starving.

D took Zoe in and fed him and cleaned him up. Within just a couple of weeks, he improved dramatically and became a nice, friendly pet. We put fliers out for an owner, but no one claimed him. I tried to take him here for a few weeks (Kai and Scrapper live at D's now), but I just became too allergic to him and he went back to D's. I am only slightly allergic to Kai and Scrap, but Zoe's long, black hair was more than I could take.

Zoe was a really good cat. He was good with my kids and my dad's dog and with the other cats. He had an outgoing personality and was very affectionate and laid back. Of the three cats, he probably had the best personality. Kai is a snob. Scrapper is a very nice cat but is a bit dimwitted and slow moving (partly because she is blind, and partly because (I kid) she is in-bred and microcephalic). Zoe was an all around nice, fun and playful cat.

Despite what a nice cat he was, we were both sort of ambivalent about keeping her. Three cats was a lot in that small apartment. There were some litter box issues, and my allergies required that I take medication every time I went over there. There was a slight problem with Scrapper. Zoe never hurt her or anything, but Zoe gave Kai a playmate who could keep up with him, and they both left Scrapper in the dust. Scrapper really needs Kai to help her out. Zoe also was not neutered nor had he had any shots. I already pay for most of the expenses for the other two cats, and wasn't excited about taking on a third.

We did look into finding a new home for Zoe off and on. But with D being in and out of the hospital and stuff, we just never could put in the time that it was going to take to find someone ourselves. By the time we put something on Craigslist for him, D would be in the hospital and we wouldn't be able to answer emails and get someone to the house to see him. I took Scrapper and Kai to the vet this spring for their yearly shots and checkup, but two cats was about all I could handle. I was leaving Zoe up to D to take care of. I would have helped with Zoe, but D needed to decide what to do with him and he never did. Zoe was sort of pushed down on the priority list, but he was safe and happy, so things went on like that.

Until two weeks ago when D started on bed rest at his house and Zoe went into heat. Zoe became really whiny to get out and started spraying everywhere. He started to not use the litter box so much. I went into the apartment and almost couldn't stand it. My eyes were burning and I could barely breathe. And it stunk so bad. I knew that if we could get him neutered, we would solve 75% of our problems. I told D that something had to be done or he was going to have to find someone else to help him on bed rest because I couldn't take it anymore.

I told D that I was call around and try to find inexpensive neutering and shots, and I would take him wherever, but he was going to have to pay for it. We also talked about getting him into a shelter for adoption. D wanted to keep him in a way, but agreed that if he went to a good home, that would be okay. I told him that I would find a shelter where we could keep tabs on him. If he didn't get adopted in a couple of weeks, we could always take him back and he'd be neutered as well.

So I spent a couple of days calling around to find 1) Low cost neutering, my first priority; and 2) possible adoption services for him. Adoption was a best case scenario thing. We were in a hurry to get him neutered, but in no big hurry as far as getting him out of the house to be adopted. It was kind of, if we can find him a good home, great. If not, he can just come back here and be our cat.

I called around 20 or so places. Many times an organization couldn't help me but would give me another number to try. Someone gave me the number for what they only referred to as "Bonnie Hays." I had no idea what Bonnie Hays was, but in my head I kind of had it mixed up with an organization called "Dove Lewis" which is a non-profit emergency vet. I had used Dove Lewis a couple of times for my guide dog, and they were always very good to me. I left a message for Bonnie Hays asking first and foremost about low cost neutering and also about no-kill adoption services.

Later in the afternoon, I found a vet who would neuter him for $28, I went ahead and made an appointment for Aug. 1st. Right after that, a woman from Bonnie Hays called me up. This woman said that they did not do neutering there, but may be able to help me with adoption. I ask if this is a vet or a shelter or a public facility or a non-profit or what? She says they are not a vet, they are a non-profit shelter. If the cat is adopted, they are sent to a vet for neutering and the adoptive party pays. Great! I say, are you a no-kill shelter? Yes, she says. Then a pause. Well, not entirely, sometimes we get animals in here who have severe health problems and cannot be saved. Other times, an animal might have such a bad behavior problem that he is not suitable for adoption. I'm talking like feral cats or dogs that have been used in fights. Sounds reasonable to me. So there is no limit to the amount of time for adoption? I ask. It is not like they are there for 7 days and then if not adopted they are put down? No, she says. There is no limit for adoption. If the animal is here for awhile and we need the room, we will sometimes turn them over to other rescue shelters like Cat Adoption Team. (C.A.T. is a no-kill shelter where we got Kai.) Okay, and I can keep track of his progress? Yes, she says. Because if he isn't adopted in a couple of weeks, we'll probably just adopt him back. Sure, she says. But you will have to go through the same adoption application process as everyone else and pay $60 to get him. Fine, I say. I do the thing I do when discussing something very important where I repeat back to her what I understand to be correct. Yes? Yes. It is a hearing impaired thing.

We go on to have a small discussion about whether I am going to turn him in as a stray or a relinquished animal. She says that a stray has to wait 30 days before he can be put up for adoption. A relinquished animal can be put up right away but I have to pay $40. I say that I have had the animal longer than 30 days and she says that means it is not a stray, it is mine. Fine, I say. She wants me to bring him in tomorrow for sure (Friday, July 28) because she can't guarantee that there will be space after that. She acts like she is doing me a special favor.

I decide to leave the decision up to D. The vet on Tuesday or the shelter tomorrow. He reluctantly agrees to the shelter. On the condition that we can get him back if he is not adopted out.

Friday, I go and turn Zoe in. If I made a mistake in all of this, besides being incredibly naive, it is right here. If you remember, this is the day that Aaron decided to cry and scream and grab his penis all day long as if he had a UTI. My dad and the kids are in the car on a hot day. I go into the building with Zoe in a carrier. The place is packed. It is a disorganized madhouse. One guy is running around trying to take care of everyone. I wait in a long line. When it is my turn, I introduce myself and say I called yesterday about putting my cat up for adoption. He gives me this smallish piece of paper that I'm supposed to fill out. I can't see what it says but he is already gone. I ask the person behind me and it is just name, address and phone. While I am filling it out, he takes my cat before I can say anything and leaves. This is the last time I saw her. He doesn't come back for a very long time. He has my carrier. When he comes back, he is already talking to other people. I ask for my carrier back and he gets it. I start saying that this cat is really great with children and really personable and should be great for adoption. He says, Okay, ma'am that's all you need to do. He goes off again leaving me standing there. I have a funny feeling, but my sickish kid is in the car and there is nothing I can do right at the moment, there is no one to talk to. I decide I will call and follow-up on Monday and I leave.

I think over the weekend that the guy was just busy and he must have thought I was turning in a stray. No one took my $40. I don't want Zoe to have to sit in a cage for a month, so on Monday I call and tell someone what happened and that I want to pay my $40 so the cat can get neutered and be up for adoption. She says that I have to talk to Karen Riley, director of the shelter, and track down the cat. She says that the cat isn't there, it is elsewhere. I am transferred and leave a message with Karen Riley. She does not call me back.

On Tuesday, I call again and leave another message. I have a bad feeling, so I call the C.A.T. and see what they think of this Bonnie Hays place. The C.A.T. place is really nice, but they say that Bonnie Hays is the county animal control and that they are absolutely a kill shelter. She cannot believe they didn't tell me this. She says there is a time limit for adoptions but she does not know what it is specifically. She says that almost all of their cats are death row kitties that they get from Bonnie Hays. She tells me to call them back and ask for a CBE, Call Before Euthanization, to be put on the cat.

I call back and ask for this CBE. They tell me that the cat has a specific number that they cannot give me. Only the mysterious Karen Riley can give me this number. But there is no hurry, Karen will call me by the end of the day. She never does.

Wednesday, I'm starting to loose it completely. I can't sleep. I am obsessed over this cat. I understand that I cannot save all the cats in the world, but I made a commitment to this one. I'm trying to do the right thing, and no one will help me. I write an email to the director of the Washington County Animal Control. I call again and leave a message. The director emails me back some PR bullshit and gives me his direct line. I immediately call him. Here is where I learn the truth. They have 30 cages and upwards of 50 cats can come in each day. A cat may only last 15 minutes at the shelter before being euthanized. The average a cat stays in the shelter before being either adopted or euthanized is 2-3 days. Zoe has been there for four, if she is still alive. It is purely arbitrary on whether a cat gets put up for adoption or just gets "euthed." If there are already 2 black cats in the shelter, the third is going to get killed before even having a chance for adoption. If a cat shows even the slightest sign of aggression, and aggression is defined as any behavior that will take the techs even a second longer to handle it, it will be killed. They are underfunded and overworked. Their mission is first and foremost to cut down the cat overpopulation problem, basically using any means necessary. He is sorry I was "mislead" but better to get the cat in to be dealt with than to risk that I will just throw the cat out to impregnate a hundred other cats. Sure, maybe I'm one of the good guys, but they can't afford to take that risk. I am collateral damage.

I am furious, but try to be nice and work with this guy, whose name is Gary Hendel, by the way. He is the only one responding to me and telling me the truth. I say that my top priority right now is to find out what happened to my cat, and if he is still alive, get him out of there. I say that I will pay to get him adopted out. He can't help me. Karen Riley can. She is out today. I can just sit tight and wait till tomorrow and she will call.

Fuck that. I put the kids down for a nap, tell my dad I'm going out to run an errand, and bus it to the shelter. I have to walk a couple of blocks between a highway and railroad tracks to get there. But I've got to see if he is there. He could be killed by the time I'm waiting for that woman to call me back.

I walk in to this building that is about the size of a McDonald's, and there is NO ONE there. I wait at the front desk for a while, but I'm worried about my time. My dad has no idea where I am (I called D and told him) and if I'm not back in about an hour and a half, the shit will hit the fan. I call back to the back part but no one comes. I just open the door and go back there. It was weird. You know on Star Trek when Picard goes to the Borg ship and no one pays any attention to him? It was like that. There were employees back there doing stuff, but none seemed to notice me. I walked into every room of that place. office rooms, rooms with dogs, rooms with lizards and snakes, rooms with vet tables. I looked into every cage. I was so paranoid that I missed him because he is black and I might not have seen him that I found this other guy wondering around and asked him to help me. Por favor, usted ve un gato negro? I stuttered. He went with me and looked through every cat cage. No gato negro.

Finally, I followed this woman around forever until she at last turned her attention to me. I told her I was looking for my black cat brought in last Friday. I could tell immediately that she didn't know where he was. She told me to wait in this hallway and she went into a room and shut the door. I knew the worst had happened. I was fighting back tears. When she came out, she had a big smile on her face. Oh! That cat was taken home on Sunday by one of our techs. He is in foster care!

I sighed in relief. I was so happy. Of course Zoe would have wooed someone into taking him home. He was just that affectionate. So how do I get him out? I want to adopt him! She didn't know. She mentioned this all illusive number. She handed me a piece of paper with a phone number on it and said to call Karen Riley tomorrow to find out how to get him.

I left in a hurry to get back home. I called D from the bus stop; excited that I had tracked him down and saved the day. But as I was telling him that Zoe was in foster care, I started to realize that it was a lie. I started to realize that this didn't make sense that I couldn't just adopt him today. I started to realize that when people hand me Karen Riley's phone number, they are lying to me.

Early Thursday morning, D and I start a calling campaign. We each call once an hour. Him on the hour, me on the half and leave messages for Karen Riley. Mine are getting more and more irate. I also start emailing Gary Hendel. He and I get into this huge philosophical debate about what has happened. I have pages and pages of emails from him. But he still can't tell me what happened to my cat.

He can blame almost everyone and everything else for what happened. He doesn't confirm or deny that I've been lied to. He doesn't apologize. He says he'll "look into it" while at the same time blaming everyone from the volunteer foster people, the no-kill cat shelters, D--for not being able to afford neutering, and even the person who let Zoe's mother breed. I say that yes, I understand that there is an overpopulation problem. I don't understand why I've been repeatedly lied to.

Around 5 pm on Thursday, Gary Hendel emails me another 6 paragraph diatribe. In the fourth paragraph, third sentence, he informs me that suddenly he was able to find out what happened to Zoe. She was killed Tuesday morning, August 1st. For behavior problems.

The unadoptable Zoe with all the behavior problems hanging with Aaron.

I have to call up D and tell him. It is very hard. I still don't know if they've even got the right cat, but it has been almost 7 days since I turned him in and the sheer odds of him being alive now are next to nothing, especially since I couldn't find him there on Wednesday. When the woman told me he was elsewhere, she meant dead.

I felt like throwing up. In all my efforts throughout my life to be a good, responsible pet owner, in all my efforts to make sure Zoe had a good and healthy life, I had managed to put him in the worst possible place. I would have been better off just neutering him and sending him outside.

Over the weekend I researched animal rights sites to see if I could find out any laws or whatever. It turns out that my story is not all that uncommon. Public shelters that are funded mostly by taxpayer money and some private donations are under pressure to show good "numbers." They want to show that they've got as many intact strays off the streets as possible in raw data. They also want to show that they have a high percentage of adoptions vs. animals suitable for adoption. Animals like Zoe, who were killed due to behavior problems, don't affect the average percentage of adoptions but do count as far as raw number of cats off the streets. I gave them exactly what they wanted. An intact "stray" that was not considered adoptable. They practically "recruited" him from me.  They use these numbers to ensure tax dollars and also for fund raising. They used me to cook their books, basically.

There is something else, incidentally. I don't know if this has anything to do with that, but I'll just add it in here. Those of you who read my old blog may remember that when I tried to adopt a cat (when we adopted Kai), we first were denied by a shelter who would not adopt cats out to us because we were disabled. They wouldn't even take our application. This was at a PetSmart outreach center, and I had forgotten which shelter it was. Well, I found out that Bonnie Hays uses the PetSmart we went to. I am pretty sure it was them.

So, now, a part of me wants to forget this ever happened. And another part of me wants to do something drastic to stick it to them, but I don't know what. One thing I'm doing is writing this story down and telling as many people as I can. The names have not been changed to protect the guilty here. The shelter is Bonnie Hays Small Animal Shelter. [Edited to add: I just noticed that their website was changed as of today. Some of the touchy-feely misleading "no limit on adoption times" has been removed.] The director is Gary Hendel. The bitch who lied to me to begin with (I'm pretty sure) and never was stand-up enough to call us back was Karen Riley. Feel free to give them a piece of your mind if you are so inspired. And, if you ever do have an animal you need to give up, for the love of god don't take them there. And be very careful of any animal shelter. Ask lots of questions not only from them but to other shelters about them. Visit a few times if you can. See if you see some of the same animals there on each return visit. Make sure you get some number or way of tracking your animal before you give them up. Read anything you sign (I didn't sign anything. Apparently, I didn't know the magic words and they decided for me that my cat was a stray and not my property.) And of course, get all your animals spayed and neutered. If you need low cost neutering and you are in the Portland metro, e me and I will give you some good leads.

I've also decided to take up a collection for Zoe and donate it to C.A.T. which is a legitimate no-kill shelter. If you feel inclined to, I welcome you to send a few bucks to them or your own local no-kill shelter. Email me for help in finding one or if you want to donate. Or you can just donate directly to them at:

Cat Adoption Team
attn.: Tribute/Memorial Gift: ZOE
14175 SW Galbreath Drive
Sherwood, OR 97140

Zoe was a nice, young, happy, affectionate playful cat. Neither he nor I deserved this kind of treatment. I'm just trying to make some good out of it and get some closure for D and I. We were very saddened by this outcome.

Neither our cats nor our people are disposable. Scrapper keeps
D company while he is stuck in bed.

Things That Are Good

Lest you dear readers think all I can write is maudlin bleckity-bleck about my families...or lack thereof, as it were, whatever the case may be, or whatever, I thought I would let you know that I can still manage an Oprah-fied Gratitude Journal type entry on occasion. So here are some tidbits.

I've been trying to figure out how to join a CSA, organic coop, locally grown farm thingy of some kind. The problem has been how to get my haul back to the compound here via...the BUS? Picture it: Me, two one-year olds, a stroller, a cane, a diaper bag, and a bin full of produce dragging ourselves up the bus stairs in about four trips as passengers glance at their watches and glare. Well, lo and behold, I found one about six months ago that would deliver to me. The only problem was, I only wanted to purchase half a share and to do that I had to be on a waiting list and be paired up with someone to take the other half share. So, finally a couple of weeks ago, they called me up and said they can deliver me a half share. But they want to do a whole bin every two weeks rather than a half bin every week. Okay. That will take some mad planning on my part to utilize all those veggies and fruits, but I can do it.

So, we got fresh carrots and apples and potatoes and cucumbers and tomatoes and blueberries and cantaloupe and corn and Oh My is it good. You forget that you loose about 75% of the taste of produce when you buy from the grocery and it has been sitting there for however long. My kids are eating plums and cherries and blueberries and steamed carrots and zucchini at every meal. So I'm happy. And now that I'm "in" the coop, I won't have to be wait listed again next year. They will go ahead and let me do half a share again. It's actually cheaper than grocery shopping produce in the long run. And the kids will get more fresh stuff to eat. They will also bring me milk, eggs, and cheese for additional cost. Those are kind of pricey, but it's nice to know because I'm always running out of whole milk for the kids.

The next good thing is a big announcement. I didn't know exactly when to announce this because it happened so gradually it was almost kind of anti-climatic. But.......Aaron is now WALKING! At almost 20 months he has officially crossed the threshold to walking the vast majority of the time over his funny crab crawl. He is still pretty wobbly, but he definitely has decided to become a bi-ped. The next challenge for him is to get him to walk with me in public by holding my hand. Naim will do it. Aaron goes noodle-y when I try to walk with him outside or in a store.

Another good thing may seem like a bad thing at first, but I've decided it is not. D is back on bed rest in preparation for an upcoming skin graft surgery in possibly three to four weeks. The good thing is that we are now so much better prepared for him to stay at home and be on bed rest rather than going to the nursing home like we resorted to last January. (Which is very good of us, because he is out of short-term nursing home days. If he goes in the nursing home anytime now before the next calender year, it will be long-term and I'd have to have a delta force type strategy to break him out.) He has Rachel in the morning, an in-home nurse or CNA most afternoons, and me in the evenings and sometimes his dad as well. Then night time by himself. Weekends are a little bit of a vacancy still, but his dad and maybe some other creativity will probably close that gap. He still has a few hours in between during the day to be rid of people and rest, something he never had in the nursing home. So, it seems to be working well so far. Another possible good thing is that at home he can continue to work on his equipment issues, whereas when he goes into the nursing home, he automatically is disqualified for certain things and qualified for others. So then any work that he's done gets eliminated. Then he has to start all over again after he gets out, then deadlines pass and he is back in the hospital and he gets disqualified again and its a vicious cycle. Now, it looks like not only will he be able to stay at home and continue, but when he has the surgery and does the six or so weeks of bed rest after that to recover, they (seem to) have agreed to let him do the majority of it in the Rehab hospital, so we're thinking he will be able to continue with getting the equipment.

How long does it take one quadriplegic to change a light bulb get a new wheelchair? Oh, it is about equivalent to the amount of time it would take his paperwork to be personally handed to every single CPA/actuary type person who works for health insurance companies in the country to look at it and say, "Tilt-in-space? What is that? The doctor says it might save his life, not to mention hundreds of thousands of dollars in medical expenses. But it is $2,000 and I've never heard of no thingy called a 'tilt in space' that could be worth that much money. DENIED!" About that long.

Which reminds me of a funny. Once D and I were talking to his brother about D's need for a certain kind of bed that he was (and still is) working on getting. D's brother said, "Where do we get this bed? I can get the truck and haul it here tomorrow!" Like we could just pick it up at Sleep Country USA. D and I just cracked up laughing. Not at D's brother--he didn't know--but just the thought of going into a regular store and being able to come out with something you actually need to help save your life. Stores are for crap you can instantly buy that you don't need, silly.

But it is good news that we have a little, itty bitty bit of hope that we can get through the next couple of months and possibly be done with this crap. We have a plan, which is better than the sitting around and hoping for D's body to actually do something crazy like heal itself. So, here is hoping that there might be a day when D can venture out into the outside world without open, gaping hull breeches all over his body.

Speaking of fatherhood--okay, well we are now, anyway. Here is another good thing. Today I took the kids to the children's museum. Before we left, I sat down on this bench in the front of the museum next to the gift shop and fed the kids a snack before we got back on the light rail to go home. This man sat next to me, alone, at a children's museum, on a weekday afternoon. Okay. My samurai awareness kicks in but I'm relaxed. A woman and a small boy who is a bit older than mine comes up to the man. She starts giving him instructions in a curt manner about the kid and says that she expects them back by five. Oh. Now I get it. Non-custodial father on visitation. So the kid starts pointing and saying something like "Memo." And the thing is, even with my hearing impairment I knew what the kid wanted. We were right next to a display of Sesame Street hand puppets. The kid kept saying "Memo" and pointing. And the guy did not have a clue about what the kid wanted or what to do with him. He looked completely uncomfortable and awkward with the kid. So I said, "All kids love Elmo!" and gestures towards the puppets in an effort to give him a clue. The father looked at me confused. So I reached up and grabbed the Elmo puppet and put it on and knelt down and played with the boy and my kids with it for a couple of minutes and then put it back. The kid was satisfied. "Oh." The father said, kind of annoyed and then took off with his kid.

That's not the good news, the good news is that it made me think of how even with D being in the hospital and/or on bed rest really the majority of the past year, and us not living together, etc...D knows his kids a hell of a lot better than that guy. D would have got that the kids wanted to see the Elmo puppet. He can understand everything they say and can spend time with them without acting like they are some form of father kryptonite. We haven't done too badly on that front, despite the challenges. Lately I've been reading some stories of women, mothers on the net who complain about their husbands who are never there or who no longer want to have sex with them or one poor woman whose husband took her to Maui and told her he never loved her and he feels trapped with the kids, so she told him to leave and then he asked her how he would be able to find a place to live and who would do his laundry and how would he take care of the kids alone etc. (Lisa knocks head into wall at women who don't think they can live alone and so settle for men who've never matured beyond the fifth grade and think they actually NEED that kind of incompetence. I'm going to start a shelter--in which I am the first sheltered, probably.) D and I have our problems, but I think we've been able to work it out so he remains close to the kids and has a good bond with them.

What else? Aaron is starting to know his letters. Especially da-da-woo and OOOoooooo. He is so into books, he is going to be one of those kids who is reading when he is three.

Naim is really, really into my mother's dog, Abbey. Abbey is a side effect of my father visiting. My father takes care of Abbey's food and water needs, but not much else. He keeps her in her cage a lot. I have felt sorry for her in the past, because I just haven't had time to give her any attention. Now, Naim is old enough to play with her and also give her attention. He does NOT like it when my father leaves her in her cage. He walks around the house and pats his leg (ASL for Dog) and says in a very forlorn voice, "DO-og!" until my father gets her out. Then Naim will play ball with her and pet her. Naim has become a better advocate for that dog than I've been able to do. He is very gentle with her and gives her air kisses. It is very cute.

My hair, which I decided to grow out approximately 8 seconds after I cut it off (it was a hair vacation more than it was a hair style), is now in the worst, most horrible craziest stage of growing out EVAH! Why is this good news? Because it can only get better from here. One or two more haircuts, and I might have something I can deal with. I'm doing the thing where I keep cutting the bottom short so the top layers can grow out and even up. Then I will worry about length. D doesn't understand this concept of why I keep cutting off the back to grow it out. I try to explain that if you have very short hair and you just let it grow, you will end up with the World's Biggest and Shaggy-est Mullet. I've enjoyed the hair vacation, though. You have to do it every ten years or so.

And last, I don't say it enough or ever maybe, but I think it all the time. I have the World's Greatest Readers and Commenters. You all send me such supportive comments and emails and sometimes I am very lousy about replying. I do read them all and I do read your sites as well and learn from you and root you on in your own lives, too. You all are very supportive and have good and thoughtful ideas and opinions. I've had a bit of hate mail here and there but in general the site remains troll-less and nutjob-less. Your contributions make it a better place to be and a better experience. So thank you to everyone who has read and commented and offered me assistance and support. It really does mean a lot.