Monthly Archives: September 2012

We’re not in Holland, Toto.

Posted on

Someone shared “That Holland piece” with my husband. http://www.our-kids.org/Archives/Holland.html on the extremely slim chance you haven’t seen it already.

It’s a button for me. Almost every parent I know who has a special needs child has had the piece shared with them at one point or another by some well-meaning person hoping to make them feel better and have a better attitude about some devastating diagnosis.

That piece drives me up a fucking wall. Shiny isn’t Holland. Shiny is more like Australia, where they have amazing vistas and tons of poisonous things that will try to kill you if they can. That piece was written about a child with Down Syndrome. If Shiny had Down Syndrome, life would have been a hell of a lot simpler these past few years.

I love her dearly, I do. I fight for her all the time. I find amazing joy in the simplest things with her. But she’s not Holland. And it’s not that simple.

That piece really minimizes what it is really like raising a child with a disability. It’s not just a slower pace with different scenery. It’s not just a changed expectation, and slowing down to smell the flowers won’t heal the soul-deep scars that her first years have left.

Every time I start to relax with Shiny in the moment, I end up getting hurt. Every time I start to relax in general, another child with her deletion dies or has a serious illness. It’s more like trying to avoid getting mugged in Tijuana than it is wandering the tulip fields in Holland.

With Down Syndrome, there are guidebooks. Maps. Support groups. Research. It’s a known quantity. With Shiny, we thought we were flying to Europe and were thrown out of the plane without a parachute to land on an unknown continent in a place where we didn’t speak the language, and we’ve been rubbing two sticks together to make fire ever since. We’re resourceful people, which means I’ve been working on writing the travel guide for the past 7 years, we’ve made friends with the locals, as it were, and through sheer stubbornness have managed to go from stone age to bronze age, as it were, in spite of, not because of the people who were supposed to guide us through, her doctors. But we didn’t get here by relaxing and enjoying it… if I’d just gone with the flow and “accepted” our lot, she’d still be crawling, if that, and she’d not be reading, certainly, and she might well have been a whole lot more medically complicated.

Maybe, now, we’ve gone native enough that we can take more joy in the day-to-day. I never needed Italy… but it would have been nice to have some decent hotels and a good restaurant or two and a whole lot less physical pain. And I’m not going to apologize for the very real grief that comes when you spend your child’s first two years not knowing if they’ll survive, and their first five years wondering if they’ll ever learn to walk.

Now that she’s walking and communicating, it’s a whole different country again… and if it had been Down Syndrome, we would have been here years ago.

Some parents take comfort from the piece. And that’s fine. If any special needs parent finds ANYTHING that helps them deal, I’m all for it. But it is one thing for it to be shown as a description of how it is for one parent dealing with their child’s Down Syndrome, and another thing when it is given as advice. As advice, it is more “assvice” than anything. “Buck up! It’s not so bad! What, do you hate tulips or something?”

During the hard times, getting something like that for the first time I’m more likely to growl, “Don’t fucking talk to me about Holland.” And during the easy times, I just don’t need it.

Pregnancy certainly is like a journey. And I’ll talk about that in another post. But this? This ain’t Holland.

Babywearing and fibromyalgia

Posted on

When I was in my early 20’s, with my first child, my favorite carrier was a stretchy pouch I’d made out of interlock. It was fast, easy, I could wear it all the time and just pop my daughter in and out. When Shiny came along years later, I was disappointed to discover that the combination of her low muscle tone and my increased pain level, I couldn’t really deal with any one-shouldered carriers. Mei tais were my life saver with her. Late in my babywearing career with her, I was given a Calyx buckle pack, and it was the last carrier I was able to use before she got flat out too heavy to carry.

I was diagnosed with fibromyalgia as an afterthought of sorts in 2008. Shiny was 3, I’d had a pulmonary embolism that year, my thyroid was wonky and I was being weaned off the steroids I”d been on to deal with an adrenal crash the year before.  I didn’t have the energy to carry her far, and bought the first stroller I owned with her.

When Miles was born, my fibro was in full swing. I gave birth in the middle of a fibro flare, and had them almost back-to-back for months after his birth.  But because he was small and light, I could use a stretchy wrap with him. Heck, when a baby is under 15 pounds, you can get away with almost anything, carrier-wise.

16 pounds and up, however, and things got harder. Front carrying was out. I can do it for short periods, while sitting. It’s easier than not wearing when he’s asleep on my chest, if I’ve got him high enough. But for routine everyday stuff? Back carries it is. So I got out my Calyx and fixed a strap that had come unstitched, reinforced it in a couple of places and put him on.

To say the heavens opened up and choirs sang is only a little hyperbolic. Finding a carrier that works for your body type and needs, that makes a 20 pound baby “weightless” on your back, is a godsend. I can get nearly that level of comfort, but not quite, from some of my larger, grippier mei tais, if I get everything just right. But the Calyx, with shaped shoulder straps and perfect padding and ideal angles on everything, is a little bit of magic for me.

Yesterday I found out just how much it’s been allowing me to do. My morning routine is challenging. I think it would be challenging for most people, with my weight, chronic pain, a 45 pound special needs 7 year old and a baby, it is very, very difficult. I try to get up without waking the baby. I don’t always succeed, which means that he screams at me while I put on clothes (one activity that is impossible for me while babywearing… putting on a bra), screams at me while I get his sister up, follows me, screaming, while I take her potty and get her dressed, because babywearing or no there is no way I can lift her 45 pounds while wearing his 20 pounds, not for long, not without injuring myself. I get her pointed downstairs, change his diaper (he’s still yelling) and then he goes on my back in the Calyx, and blissful silence descends instantly. I get her lunch, get her shoes on, he’s quiet and content. I push her in her wheelchair (the only time we use it is to and from the bus because she’s too slow and falls down a lot if we try to walk her to the bus) and throw a fleece jacket over Miles and me, and we go to the bus, get her loaded, then come back to the house. It’s a routine.

Yesterday… Yesterday I forgot to take the Calyx upstairs. I grabbed a mei tai, put him on my back. At first it was okay. But it was a baby-sized mei tai, not one I normally wear for long, and by the time I got her lunch, my back was screaming. We were  running late, so he stayed on my back in the mei tai to get to the bus. I was nearly in tears on the way home. My hips were screaming, my back spasming, my whole body hurt.  Later in the day I had physical therapy and  worked really hard.

I woke up this morning in so much pain… but putting him on in the Calyx… babywearing didn’t make it worse. I was in less pain walking back from the bus than I’d been when I got out of bed.

That’s the difference the right carrier can make.

But even with the best carrier I’ve ever owned… there are times when I simply cannot wear him. It breaks my heart, but there are times when I have to choose between holding him and making dinner, and we have to eat. But he is held much more than he would be otherwise, because I have the right carrier.

The Calyx is not being made anymore, which is sad. I find that of the carriers I’m using now, the Ergo Sport, the Kozy Carrier and the Tettitett are the most tolerable. I have a Kozy with extra long straps, and I wear it “Tibetan” style, and it is supportive and works for fairly long periods of time. The Tettitett is a toddler sized carrier, and works very well if I tie it perfectly. The Ergo Sport is a bit annoying to get on, but distributes the weight well.

The carrier I had so much pain with is not a bad carrier. It is actually very comfortable on the front and fine for shorter wearing on the back. It’s well made. Most moms would love it. But it’s not something I can get right the first time, every time, when I’m sleepy, rushed and in pain.

I wish I had the patience to really learn wrapping, but back wrapping has just never been very comfortable for me. I can do it but it’s not fast, and I have to put too much thought into it.

In the meantime, I have carriers that work for me. And my baby will figure out that me standing up without him is not the end of the world.

Babbling in babies (or not)

Posted on

A member of my due date club has a little girl who is 9 months old and not babbling. Knowing a bit of my history with Shiny and Shiny’s language issues, she asked what I would do about it.

What I did and what I recommend doing are two different things. I was so overwhelmed with Shiny that a lot of things slipped by the wayside and were done later than I would consider ideal. What I recommend doing is getting her in for a hearing screen, insisting that they screen in whatever way they need to (they CAN screen with clogged ears, a bone conduction test will tell if the brain is hearing, and you can get an idea of how much hearing loss she has, if any, with the glue ear) and asking for intervention to be done sooner than later if she has demonstrable hearing loss.

Intervention #1 is to attempt to clear the ears. I would give this up to six weeks max, using antibiotics or whatever you need to do before shifting to something more invasive, like tubes. That may be all the intervention necessary if the only problem is glue ear.

Intervention #2 is to start using sign language with her RIGHT NOW. Get the Signing Time DVDs, your library may have them, or you can download them I think, also. Don’t worry if she doesn’t pay attention to them, YOU use them to learn sign vocabulary. Reinforce the major words you say to her with signs. Mama, Daddy, Eat, Milk, Sleep… etc. That gives her language reinforcement NOW, and makes sure that her language is developing by any means. Signing time makes sign language very sticky in your head. smile

Intervention #3, which I would consider if she gets to about 11-12 months without babbling, is to visit a speech/language pathologist. If they don’t have them for kids under a certain age, occupational therapy should be considered if it looks like she has motor planning issues for language.

We got Shiny talking with bananas, in part. We’d say, “Banana! MMMMM!” and she started going “MMM!” to get a bite.

You want to make her world rich with language. Talk to her a lot. Say things normally, repeat yourself simplifying, emphasize with sign…. Use songs, finger plays, food, whatever, to reinforce everything.

And don’t panic. There are kids who don’t say a word until age 2 or 3 and then don’t shut up, but it is very worthwhile to make sure that all systems are go before you decide she’s just not ready to bother yet.

What would YOU do or advise? Answer at the blog (jenrose.com) please!

Nursing in public

Posted on

With my first I was very discreet. Mostly so with my second. Then a woman got harassed in a Target for nursing under a clothing rack with a blanket over her baby, and I said no more. I don’t cover up unless it is convenient for ME to do so (i.e. to stop a baby from looking around.) 

Because I realized that it doesn’t matter. Decent people with good manners will not bother a nursing mother no matter HOW much boob they can see. Jerks will be jerks no matter how much she covers up. And yes, if you tell a mother she should cover up, you are being a jerk, no matter how “decent” you think you are.

It has nothing to do with modesty. I have a size 46L chest. My breasts are bigger than my baby’s head, and there are NO nursing clothes that I can reasonably afford on the market. And my baby gets to eat. If someone has a problem with that… it is THEIR problem. Not mine. Not my baby’s.

And no one has EVER told me to nurse somewhere else. Not ever. Not once. Which is as it should be in a decent, sane society.

If you disagree? Keep it to yourself. I don’t give a crap, and the law is on my side. I don’t want to know if you’re a jerk.

I am my baby’s lovey…
I'm his lovey

ETA: This pretty much sums it up, and is a good answer to 97% of the shit people throw out there against public breastfeeding.
http://doublethink.us.com/paala/2012/02/03/read-it-every-argument-against-nip-debunked/

Placentophagy

Posted on

Someone asked about eating the placenta.

We saved a chunk of it and encapsulated the rest. The chunk went into smoothies. EVERYONE SHOULD DO THIS OH MY GOD. What I told people before hand was this. “Look, I have friends who have had PPD several times and then eaten their placentas and had a much easier time. And if someone said, “Hey, look, we have a number of case studies where people who stood on their heads and juggled chainsaws with their feet had much happier postpartums” I probably would have said, “Sign me up for upsidedown chainsaw juggling!” Because PPD is rotten and awful and I didn’t want to lose another postpartum. 

So on day two, I was starting to wobble emotionally, and my midwife helped my sister prep the placenta for drying, saving enough for about 5 smoothies. If I were doing it over, I’d save only enough for 2 large smoothies, and dry the rest. I don’t know exactly what they did to the placenta for encapsulation, Amanda Moore could give specifics. But the raw bit, they cut into 1-inch chunks, and made smoothies.

I’m allergic to some things, so they used Trader Joe’s Very Cherry blend with “something milky” and I think maple syrup. The best was when they used Organic Valley egg nog (it was the holidays) plus vanilla and the fruit. 

It worked best to add the liquid, then the placenta, then the fruit, my teenager said, though it looks rather gory while you’re mixing it, you get a better grind on the placenta that way. 

I noticed very little of the texture of it, the berry seeds covered it well. 

What I did notice is that I went from a blubbery teary mess to “fine” within moments of the first sip. To the point where if my teenager saw me start to get weepy, she’d go make me a smoothie without my asking. 

When the capsules were ready, I took two per day and had enough to last through my whole 6 weeks. I cried when they were gone, but adapted reasonably well.

Things that were helped: Less disasterizing. Great milk supply despite tongue-tied baby. MUCH better mood and more stable mood. I was much more resilient. I wish I had them still, as the farther I get from my postpartum, the more disasterizing creeps back in.

There were a lot of things that could have really derailed me in my postpartum, and the placenta was this magic support keeping me from falling into a pit. (My husband had to go back to work less than 24 hours after our son was born. I had a transport. Breastfeeding was really hard despite 18 years of previous breastfeeding support experience, 8 1/2 years of previous personal breastfeeding experience and a special needs, low tone baby prior to him. I had fibro flares from the time he was born at the rate of a couple per week for a very long time.) But it was by far my best postpartum. And I could feel the difference after taking a capsule or drinking a smoothie. AFter about 4 days, the capsules were stronger than the smoothies, the first days the smoothies were stronger.

If it was the placebo effect? FINE. Sign me up for more of that shit.

ETA: I don’t have pictures because it was prepped too quickly for me to get them. But I did take pics of Shiny’s, which is fascinating. You can see them here: http://www.flickr.com/photos/9574521@N08/sets/72157631633493608/

10 things about babywearing.

Posted on

1. I always think i’m going to wear my newborn constantly. But I really don’t need to, because they sort of stay on my shoulder without a lot of effort while they’re under 10 pounds. That said, on the rare occasions I had to be up and out of bed in those first weeks, stretchy wraps (my favorite: Wrapsody Bali Baby Stretch) are a godsend. Put it on, pop them in, take them out, pop them back in again, lift them up, lay them in the outer passes to nurse, pop them back in again. VERY convenient, but something I only did when I was up and around. Babywearing while sitting at that stage is barely necessary for me.

2. Newborn backwearing is a gimmick and not worth the bother. I can do it, but even with boobs like mine I can’t nurse a newborn on my back (toddlers are another matter but we’re not going to talk about that…lol!) And newborns want to nurse a lot. They want to be changed a lot. Back wearing doesn’t even really start for me on a regular basis until 4 months or so because it is not really as convenient and it is MUCH harder to do with a shrimpy little infant than it is with a bigger baby whose legs reach where I need to cross straps. Realistically i’m going to front wear as long as my back can stand it, then move them to my back 90% of the time after that. The ONLY situation I find backwearing really helpful with a small baby is when cooking something involving hot liquids. It’s safer then.

 

3. It is less important to worry about whether your baby’s back and spine are “developing properly” and more important to pay attention to your baby’s cues and preferences. Most of my babies at about 2-4 months really prefer to face out when they go into a new environment… but rapidly tire. As soon as they start yawning, hiccuping, or turning their heads/closing their eyes, I turn them back around. 20 minutes is about as long as most babies that age can deal with facing forward in a busy store, but giving them that 20 minutes buys a ton of peace. Baby LOVED the hardware store, then would sleep through the next couple stops, facing in. The evidence just isn’t there when it comes to worries about hip/spine development and overstimulation, but common sense says you don’t keep a baby in any one position too long, especially if they show signs of discomfort. I’ve never used a Bjorn for longer than a few minutes, so I’m doing my front facing out with wraps (legs supported chair style), ring slings (baby buddha), and mei tais (also buddha, legs in).

4. No matter how lush and long my hair got when I was pregnant, the minute I start backwearing regularly it’s gone. Hair pulling hurts, and shorter hair is easier to keep out of reach. It’s the only thing I’ve found that reliably helps. 2 braids got me through with my first, but I looked like I was 12.

5. I can have dozens of carriers and I keep coming back to a small handful of favorites. One of them is not being made anymore (the Calyx) which is tragic. But the Kozy carrier and Tettitett ARE being made, and they are marvelous. 19 years worth of trying carriers out and I keep coming back to these three. Plenty of others I’ve liked fine, but for me and my body and the way I wear, these just make sense.

6. I have a problem with the Wrapsody stretch wraps. I call it Pokemon Syndrome. Namely, I keep getting more and not being able to loan them out, despite having given away more than 100 carriers in the past 20 years, I love the fabrics so that I just can’t make myself give them away. Except one. But I’d gotten a second rainbow one and the first one I didn’t like quite as well. I have four of these now. Wraps are like this. People get very, very weird about wraps and I don’t even USE my stretch wraps very often anymore and I still can’t give them away. They’re too pretty and I love them too much and I should probably just frame them and be done with it, they are that gorgeous. Gotta catch them all. Well, most of them. But I don’t NEED more. But somehow that doesn’t matter. Right. Anyway, like anything pretty made of cloth, carriers can be addictive if they’re pretty. And they are an expensive addiction. My husband should just be glad I didn’t get addicted to Didymos wraps.

7. Once a baby hits 16 pounds, backwearing is a must, and being able to put a baby on your back quickly and get on your way is a lifesaving skill to have. Learn the Santa Toss, my lovelies. Use it. Get good at it.

8. One of my children may well exist because I desperately wanted a baby to wear. No, I won’t tell you which one.

9. When you have a special needs child and fibromyalgia, sometimes you really do have to buy a stroller. She was 3.

10. Fibromyalgia sucks and means that sometimes the baby needs to scream for a little while while I make dinner because despite having the best baby carriers known to motherkind, it still fatigues me too much to cook and wear him on a day when I’ve gotten my special needs kiddo to the bus and back. He’ll be okay. I’m really RIGHT THERE talking to him. He’ll figure it out soon. No matter how boss I am with baby carriers, there are some times when I just don’t have it in me to have him on my body one more minute. That said, if I MUST have him in arms? THANK GOD for babywearing. Because I could not do so much of my life without it.

Carrier review: Ergo Sport

Posted on

Tried an Ergo yesterday, first one I’ve worn for long since… gosh, I had one briefly with Shiny that I was never that fond of.  http://store.ergobaby.com/Baby_Carriers/Sport/BC6SPH for the one I’m reviewing here.

It fit me fine, but I find side waist buckles to be aggravating in the extreme. I have to contort awkwardly to reach that far over to do the waist, and I don’t like doing the waist up first when I put the carrier on, so it’s not very compatible with how I like to do things. It makes something that should make things easy (waist buckle) and turns it into a minus vs. say tying or a center-clipping buckle. When you have as much up front as I do in the chest department, having to reach across to buckle things is difficult.

Not wild about the strap buckles in my armpits, but they’re way better than they used to be.

Wearing it was very comfortable. Not quite up to the level of the Calyx, but certainly as good or better than most of the other SSC’s I’ve tried recently. I do like the super soft fabric, but it is SO soft and flimsy where the straps meet the body of the carrier that twisting happens way, way too easily.

The waist buckle issue would keep this from being something I’d reach for often (I have better) but the long-wearing comfort might override that for me.

The sternum strap is cleverly done and an improvement over past models, far more functional than most.

So much improved over the first one I wore, which pinched my armpits terribly and made my arms numb, but still has a bit to go to reach carrier nirvana.

I’ll be doing a joint review with Erin at http://www.thebabywearingblog.com sometime in the next month or two of this and other carriers.

 

Mitochondrial disease made the news…

Posted on

One of the things about Shiny’s deletion is that it acts like a mitochondrial problem. The problem is not in the DNA of her mitochondria, but in the “supply chains” that feed the mitochondrial processes. Here’s her story in a nutshell, in response to this article:

http://www.cnn.com/2012/09/21/health/mitochondrial-disease-martin-family/index.html?hpt=hp_c1

My daughter has a rare chromosome deletion (4q21.1-21.3). Early in her life she seemed a baby in slow motion, every stage lasted longer, everything was quieter, all her systems were affected. I would watch her play, and it looked like her batteries were running down, she’d just STOP every so often, stare off into space, and pat the floor. A minute would pass, and then she’d rouse and go on playing as if nothing had happened. Her muscle tone was low, she had trouble learning new words, and if she learned a new word, she’d forget an old one. She lost “mom” for 5 months. I kept saying, “Mitochondria”…

Other symptoms included: lack of hunger, lack of satiation (she’d never ask to eat, but would eat until she couldn’t physically cram more in once food was in front of her), lack of a ‘wake up’ cue and the ability to stay awake for unnerving lengths of time. She grew slowly and inconsistently, had swallowing and coordination issues, and at 23 months was still mostly scooting on her belly, not crawling up on hands and needs for more than a step.

One night, researching, I found information on a mutation in one of the genes in the area she was missing, which suggested that part of what she was missing was responsible for encoding some of the precursors for CoQ10. Her symptoms were a less dramatic version of the symptoms listed. When I got to the section on treatment, I started shaking. I woke my husband up. The treatment? CoQ10.

I sent emails off to the researchers who said essentially that there was no harm in trying CoQ10. So the next day I went to the store and picked up a bottle. I chewed a capsule myself to see if it was tolerable–it was, so I let my 23 month old chew a capsule at the dosage the doctors suggested. She did. I didn’t expect immediate results, I thought it might be a month or so.

3 days later she started picking up new words… without losing the old ones. She started crawling everywhere on hands and knees. She started asking to eat, and stopping when she was full. She had more energy during the day. The transformation was amazing.

We changed brands at one point, and she started losing ground again. Some brands of CoQ10 do not have good quality control. We switched back, and she started making progress again. That confirmed it for us. We added R-lipoic acid, to help her body use the CoQ10 better. Three days later she started stringing words together, and getting our attention before signing at us. We added a multivitamin, and DHA. We changed versions again of the major supplements to even better absorbed versions… and one day I realized that she was singing a Beatles song.

Today, my little girl who was not supposed to develop language… is reading. And learning to write. She counts, and is learning to subtract. We have confirmation now that other children with her syndrome do in fact have mitochondrial dysfunction, as I believed. She gets sick, her immune system isn’t perfect, but she gets better. And I have no idea how long she’ll live, or how far she’ll go. I have less of an idea now than I did when she was tiny (and then, I was wrong). But you know what? None of us know how long any of our children will live. None. We don’t know how much progress they will make, and I have had friends who were told as children they would not live long who are now in the their thirties or forties.

Mito cocktails are not “cures”… but as treatments go, they’re pretty dang miraculous in my book. My little girl can read. And she can laugh, and she can play, and she loves us, and we love her, and really, everything we get past that point is just gravy.

There is so much progress being made, so quickly… don’t count that baby boy out. Don’t take “no” for an answer, and don’t believe the doctors know as much as they imply. With rare syndromes, it’s all guesswork, because the sample sizes are and always will be too small for the controlled studies.

Since I put Shiny on CoQ10, many other kids have gone on similar supplements. It doesn’t work for all of the kids with her syndrome, but where it does work, the results are amazing. We have little kids who were not expected to live past age 2 or to develop language who are walking, talking, running, reading, writing, and new to us this month… dancing.

What is in someone’s shopping basket is none of your goddamned business: The politics of welfare

Posted on

A cousin of mine posted this on facebook:

I looked at it, sighed, considered ignoring it… Yeah, no, not going to happen. Here’s some of what came out of her post:

So wrongheaded. This is going around. Having been a welfare mom, and now being a taxpayer, I have Opinions on the subject.

1. Florida tried it. 98% of welfare recipients were not taking drugs.
2. It cost them 179 million dollars to find that out… the amount of welfare they ended up not giving out was a tiny, tiny fraction of that amount.
3. Florida required people to pay for the pee test up front. It was about $50. When I went on welfare, I did not have $50. I did not have one dollar. I could not have gotten help from welfare, not because I was on drugs, but because I couldn’t have afforded to take a drug test for it.
4. Be very, very thankful your life is so blessed that you have not had to have this “help” from society. Because let me tell you, it is demoralizing enough to be dumped at 7 months pregnant by the “love of your life” and have to go on welfare to survive until you are back on your feet enough to get a job… it’s worse when people who do not understand what it means to be that poor sit back and judge you and call you names and make assumptions and nitpick every damn thing you do because it’s “Their money”.

You know what? I’ve paid back in more than I ever took out. And you know what else? If a single mama needs help, I really WANT her to have my tax money to get that help. Because I’d rather it help a mama get back on her feet than underwrite a corporation or a bank… because trust me, THOSE assholes don’t have to take their pee tests to get the government money.

—
Someone griped that not all people working in finance were assholes.

My response: “I didn’t say that people who worked in finance were assholes. I said banks and corporations were assholes, which may be overgeneralizing, but if people behaved the way the finance industry behaved, they’d be called assholes. And we’re told that corporations are people, ergo…”

“And I can guarantee that no corporation has been asked to take a pee test before getting government money.”

—
Someone pointed out that food stamps are relatively easy to get and use of food stamps has mushroomed in recent years. To which I responded:

Food stamps has a relatively low bar to clear to receive assistance, unlike TANF (temporary aid to needy families, which has a 5-year LIFETIME cap on receiving benefits, is what was once called welfare). TANF has many, many requirements and lifetime limitations, food stamps is mostly income-based. Food stamps are less loathsome to many people because they do not allow the recipient to purchase alcohol or cigarettes. they also don’t allow the recipient to purchase toilet paper or soap. When the economy tanked, you’d expect more people to end up on welfare, but in fact the # has decreased if anything. Food stamp usage has soared because it’s easier to get them (as it should be). I was on welfare from 1993-1996, during which time I did training, volunteer work and escaped a toxic relationship. I got the works, food stamps, housing, welfare, medicaid, child care subsidy. What this meant was that I was able to afford a very modest 2-bedroom townhouse in the poorer parts of town. I was able to get training because I had childcare to do so. I was able to go to the doctor when we were sick. I fed my child.

The first thing I worked my way off of was welfare. My daughter was 3. We still had food stamps and medicaid and child care subsidy, as well as housing. Food stamps went next, as my working hours increased. Medicaid went later.. that was hard, I couldnt’ afford insurance, got sick, ended up being on a very reduced work schedule until I qualified for medicaid again. We mostly ate with my parents during that 9 weeks. Once I was able to go to the doctor, I got better quickly on antibiotics, and I made the case with my employer that if they wanted me to be able to come to work on a regular basis, they really ought to provide health insurance. My productivity increased dramatically when I had “real” insurance, as at that point antihistimines that were non-sedating were all prescription, and my constant allergies were making me get sick all the time, but medicaid would not pay for antihistimines at all in Oregon. (They would pay for antibiotics, so i would get sick a lot and get better reasonably quickly, but I stopped getting sick constantly when I was able to go on antihistimines.)

I got a raise, was able to work more hours, and my daughter started public school, which meant no more child care costs… My share of my rent payment went up, and I got on a program where a portion of the rent increases was put in an account that could be used, when I no longer needed assistance, to help me put a down payment on a house. I have been assistance-free for nearly 10 years, and since then have been paying property taxes, etc.

I had ONE baby on welfare (IIRC the majority of welfare recipients only have one child)… and decided not to have more until I was off of assistance.

I got married. My husband and I now pay more for health insurance in a month than I used to earn as a single parent. You don’t have to tell me the system is broken. It is. But there is a social benefit to providing help and opportunity to struggling families.

—
Someone mentioned the belief that poverty is “deserved”, the result of bad choices rather than bad luck. My response:

Oh, my stint on welfare was certainly the result of a poor choice… I got pregnant accidentally due to an odd conglomeration of circumstances with someone I thought was my life partner, and we were very, very young (21) and he wasn’t as interested in sticking around as he’d led me to believe. Which is a pretty common story. My choice was to refuse to move out of an apartment which was becoming toxic for me and my child, or to go on welfare. This is probably THE most common reason women end up on welfare, a relationship ending, accidental pregnancy.

I happen to be of a mindset that I was not willing to have more than one child “on the system”, so I went so far as to spend years celibate rather than risk having another “welfare baby”. But having been in my share of stupid sexual situations, I don’t judge people who are less “lucky” at birth control. I have had one accidental pregnancy in my life despite being ridiculously intolerant of most forms of birth control (not morally intolerant, they just cause me problems). I’ve met born-again Christians who despite thinking premarital sex was a sin, would happily engage in it. I’ve met women who’ve gotten pregnant on the pill, with an IUD, while using NFP, while using condoms, even after a tubal. It happens.

Being unlucky in love or unlucky at work or making foolish choices or acting badly… the fact of the matter is that in my current situation, if I act badly or make poor choices about birth control, I have the resources to not have it overwhelm my life. But for poor women, with the increasing number of hurdles to things like abortion and birth control and access to help from the law or charities regarding domestic violence, the simultaneous attacks on welfare and other social services become a deluge of hatred toward poor women. People may think of it as “helping people be less dependent” but it looks to me more like bullying. Calling it a war on women may sound like hyperbole, until you look at how utterly devastating it would be for poor women were the right wing agenda to succeed fully.

I see this sanctimonious attitude of “Well, if I need to get pee tested to go to work” (and usually work where there is some level of responsibility, where using drugs will likely affect the quality of output or the safety of others) “then you should get pee tested to get my money” (even though the majority of the people who have to get pee tested to go to work are NOT in fact paying the specific tax that is collected for welfare, and even though the amount of money in question is not enough to support a child, let alone a drug habit) as a wedge in the door. It makes sense, in a quid pro quo world. It’s hard to argue the “fairness” of it. But make no mistake… it is NOT an efficient use of funds. It helps no one. It harms a lot of people. And it’s aiming yet another attack at the people least able to defend themselves. The people most damaged by policies like these are children. Always. Period.

—–

So ideas of privilege and entitlement started getting bandied around, and I said:

I learned about privilege in high school. I was standing at the bus and heard a boy say, “Damn” and a teacher nearby came down on him like a ton of bricks, gave him detention. He was a “stoner” and one of the “bad kids” but I knew as an honors student that I’d said way worse in conversations *with* teachers and never once gotten in trouble for it. As an experiment, I skipped a class, went off campus, bought lunch at a fast food restaurant, came back on campus, sat down in the middle of the quad, and ate it during a class where NO students have lunch.

Five or six teachers passed by, and each smiled and said hi to me, not one questioning my right to be there, where no student should be, eating lunch when no student should be eating lunch. When I was done, I went to the counselor’s office and said, “I didn’t feel like going to class, can I get it excused?”

She gave me a note without a second thought.

THAT, my friends, is privilege. And it is a clear example of how the same actions do not get the same consequences if society perceives you one way or another. I was a lawyer’s kid. I was an honors student. The teachers liked me. So I could get away with things that would have gotten other kids suspended. I didn’t abuse the privilege much, but there were others who did. And my perception is that it was extremely unusual that I even noticed it existed. The teachers did not even know they were doing it.

—
Then in another thread someone asked what the difference is between privilege and entitlement, and I said:

Entitlement says, “Because I am who I am, the world owes me X.” HOWEVER… there are things people ARE entitled to. Should be entitled to. Have every right to be entitled to. Children are entitled to have a safe place to live, enough food to eat, warmth, love and education. Old people are entitled to have society support them at a a basic level with social security and medical care. People who work and pay into the worker’s compensation system are entitled to have their work-related injuries treated and to have their lost income replaced.

So the radical right thinks that “entitlement” is a bad thing, all the while ranting because they think they are “entitled” to have their religion dictate public policy.

It means two different things, which get thrown around interchangably.

I am of the mind that no one is entitled to force their religion down anyone else’s throat (and the constitution agrees with me) and that we as a society are obligated to support each other at some basic level.

It is privilege that my whole life, if I needed medicine, someone in my larger circle was able to get it for me. Today I bought a friend some ibuprofen because she had none and no means to go get any, and no family worth mentioning to fall back on to help her.

In practical terms, “Entitlement programs” are programs that ANYONE can get if they fit the definition of “a person who should receive help from X program.” So anyone over 65 (or whatever the age is now) is ENTITLED to medicare, to social security. For a comparison, food stamps is an entitlement program. Section 8 housing assistance is NOT. There are waiting lists for section 8 that go for YEARS and do not open up, but there is no waiting list for food stamps. Which is why we have more homeless than hungry in our society.

*I consider people homeless or functionally homeless in this case who cannot afford to have a home of their own by choice, including people who live with friends or relatives because they cannot afford to live on their own when they would otherwise choose to do so. I rented a room I shared with my daughter for years before I got Section 8 and could move into my own place. I do not judge the living situation, I’ve done it, but there are far more people in my experience who have trouble affording a place of their own than there are people who actually spend a significant amount of each month hungry.

And entitlement abuse is a concept whereby someone gets access to an entitlement program through fraud or deceptive means. We already have many laws about such things. Trust me, being on welfare sucks. It is not a lot of money. If someone can’t find a way to live without the support of SSI or welfare, feeling “jealous” that they are getting free money is like being jealous of a bum for his cardboard box. Because that’s all they have. I worked my way off of welfare because it SUCKED. Because working gave me more money and gave my daughter more resources and us a better life. If someone is so bad off that they don’t work and require state assistance, I feel pity and compassion and I do not judge whether they’re “doing it right” or not.

Let me make this clear… if you see someone in the grocery store buying things with food stamps, it is NOT YOUR BUSINESS or place to look into their cart, to judge what they are buying. SO WHAT if they are buying soda? They may have a sick kid at home who can’t keep anything else down right now. SO WHAT if they are buying ready-prepared foods? You don’t know if they have access to a stove or not. SO WHAT if they spend all their food stamp money on chips? When it’s gone, it’s gone. The place to fix those problems is in voluntary education. Which I do all the time, teaching people how to cook. There were times on food stamps where I bought treats with food stamps. Do you really begrudge a mom the ability to buy her kid an ice cream once in a while? Pizza? If I managed my food stamp money so that we had a little extra to buy a take and bake pizza…. GOOD FOR ME. Sometimes we ate really cheap food or mooched off my parents for a while so there would be a little extra so I could buy the makings of a cake for my kid for her birthday. The point is that people think of it as “abuse” to buy foods they would not buy themselves or which are not healthy with food stamps. What it is? Is none of their business. It’s not like people get more money if they buy chips.

—
Then someone said, “But I see people buying stuff with food stamps who are better dressed than I am! How can I not judge?”

I answered:
You don’t know how they got the clothes they’re wearing. A bunch of mamas in my area just got REALLY expensive baby carriers gifted to them. Because they know me, and I know a manufacturer who wanted to donate them somewhere they’d be used and loved. I used to buy my kid very nice clothes… second hand. Or we’d get them handed down or as gifts. You really don’t know. You don’t.

I’m not saying there aren’t people who don’t use their money efficiently. But there are people who look very middle class who are drowning in debt because they have spent money they don’t have on “looking” affluent when they’re not. You judge them because they have evidence of poverty: food stamps. But are you judging the people who are 100k in debt and buying their groceries with a visa card they may or may not ever pay off?

The only real difference is that if someone shows up with an Oregon Trail card or other food benefit card, you know they’re poor, so you judge. They pay with a Visa card, you have no idea.

Jenrose.com

Posted on

This blog is a catch-all for me. I blog about what moves me, amuses me, and makes me angry. I’ve been blogging in one form or another since I was pregnant with my middle child, and have been active in various forums on the Internet since 1995. I’ve had a web site of one sort or other since 1996, and have had jenrose.com since the late 1990’s. Older material may be found at LiveJournal.