I've Moved

I was given this blog as a gift from my sister in December of 2008. Back then it was the only social media outlet I had. Since that time, I've joined the rest of the world on Facebook, Pinterest, Twitter, Instagram, Tumblr, Flickr, Vimeo, and Google+. I have really enjoyed writing here, and more than that, making blog friend connections. But as WordPress has moved on and become the Cadillac of blogging platforms, Blogspot has not kept up. Once Google dumped the Reader, I knew it was time to move on to a place that would be lots of fun and much more than just a blog. My new blog connects all of my social media into one place.

I hope you will visit me there: The Unknown Contributor.

As I wrap up here, I’ll leave you with links to your favorite posts (based on traffic) on this blog, and a list of mine. Your five favorites:
Beyond Down Syndrome
It Wasn’t Meant that Way
The Butt of the Joke
10 Reasons Why You Wish You Were a Special Needs Mom
Compliance and Special Needs

My five favorites:
Crossing the NICU Styx
Man Feet
She Kissed Me
The Wrecker
Lunch at Pizza Hut

Welcome to the Forties

My mother was 26 years old when she had me, so in the year I turned 13 she turned 40. For the next decade, while I was blooming, she was going through the transition years. She did it with such grace that I never picked up on what was happening to her. I remember the occasional flake of dry skin on her cheek and now and then a wayward eyebrow hair, as well as a few offhand comments about how her stomach “used to be so much more lovely” before my sibling and I ruined it, but that’s about it.

Now though, I’ve got the inside scoop on the forties. Here are ten things that are coming your way:

1. Your skin gets confused and worn out. On your cheeks it vacillates between dry patches and little break outs. Solving either of these problems seem to exacerbate the other. Crows land on your face while you’re sleeping, leaving their imprints to frame your eyes and mouth. The skin on your hands starts to show what one might be tempted to disingenuously refer to as freckles. And the rest of the coat? All laced with the faintest signs of slippage; gravity is taking over.

2. Episode by episode, you come to accept that you are those people. It happened to us again just the other night at the 3 Doors Down concert. We took our seats and I looked around and said to my husband, “Holy crap, everybody here is so old.” And he said, “Yeah, so are we.” If you never looked in a mirror, your timeless brain would reject such nonsense.

3. Ain’t no way you can crack up laughing (or sneeze) without peeing in your panties. Seriously, crossing your legs at the first hint of humor becomes second nature. For the longest time I was convinced this was the fault of having given birth, but my childless best friend has assured me that she too suffers from pisseritis.

4. That beautiful mane migrates and your melanocytes* go mad. Year after year the ponytail circumference shrinks. But not all that hair is gone.... no, no, strays wander off and pop up in the most unlikely of places. Once yanked, odds are about 50/50 they will reappear again. To add insult to injury, the hairs you want—head, brows, lashes, and ladybits—come back in white, but the strays are dark as can be.

5. Woot! Woot! Women in their forties are prone to multiple orgasms! There’s a good reason for that. Turns out we’re on a monthly hormone rollercoaster that whips us through the sex-craving days in about 72 hours. For those three days e.v.e.r.y.t.h.i.n.g. reminds us that we want to get it on. (Wistful wondering: is this how guys feel every day of their lives?) The rapid fire Os we log then keep us satisfied until next month’s luteinising** surge.

6. The night finally comes when you know for sure that you’ve already been there and done that because you can no longer stay awake late enough to go there and do that. The eyelids are just getting heavy right about the time you used to be putting the finishing touches on your makeup prior to going out partying. Nowadays its a big deal if you last through the Tonight Show (and with Jimmy Fallon hosting it, that’s a serious temptation). At 6:30 a.m., the piper gets paid and you’ll swear off late night again.

7. One ordinary day while you are standing in line at the grocery store, you’ll no longer have any idea who that famous person is on the cover of People magazine. Who are the Kardashians and why they are famous? Is that the boy from Which Direction? And worse yet, for the first time in your life you can’t jump on the latest fad. Bra strap seductively showing? Check. A tattoo? Check. A train track of earrings up your ears? Check. A belly or nose ring? Check. A pair of thongs poking up out the back of your jeans? Check. A selfie of you on Facebook with your mouth wide open and your tongue stretching out as far as it can possibly go? Ewwwww.

 

8. No, you are not a hypochondriac because it IS freaking possible that the shortness of breath you are experiencing shoveling the snow off your walkway might actually be a heart attack. You have entered the decade of “This shit could be real.” It is also the decade of, “I missed the bottom stair and now I have a back injury that’s gonna last forever.“ Yup, you just don’t bounce back like you used to.

9. You can’t see a damn thing in front of your face. Text messages, recipes, medicine bottles, the bathroom entertainment mag... you can't read any of it without those over the counter plastic reading glasses. And because you are still too vain to invest in a chain, you have a pair stashed in every room of your house, as well as your purse and the glove box.

10. You aren’t sure anymore if the guy in line is flirting with you or just being kind and deferential to the old bag next to him. And if he is flirting with you, you sort of feel skeeved out that someone young enough to be your son is thinking dirty thoughts about you.

It’s not all bad news though. While your body is busy falling apart, your mind is really coming in to it’s own. In fact, you barely give a crap about that list because you are more secure with yourself than you have been your whole life. You are rocking it.

My mom is still rocking her pretty little self, but I keep a close eye on her now. That’s right, I’m paying attention to what’s coming down the road. And one thing I can already tell you is that when you hit your 70s, you’re going to plan every minute of your day according to the freaking weather report.



(*the things responsible for developing hair pigmentation.)
(** If you google it, make sure you throw the word desire in the search box as well, otherwise you are going to learn all about late puberty or fertility.)

The Masters of Shitastrophies

This morning I averted major shitastrophy. I caught Autumn with her pajamas down to her ankles and her hands just starting to pull at the sides of her diaper full of poop. We marched right to the potty and had a talk about not taking the diaper off. She was all smiles. And I was pretty happy myself, the kind of happiness that comes from great relief knowing you have avoided an awful yucky job.

My husband and I have become pros at cleaning up shitastrophies. One of us captures the child with a super-sized bath towel, wraps them up tight and whisks them directly to the bathtub, while the other strips the bed, and goes after the surroundings with a tub of Lysol wipes. Together we can have the kid and the room cleaned up and fresh as new within twenty minutes. This speed and efficiency comes from a few years of cleaning up poop disasters that have left the diaper thanks to our curious and dexterous toddlers.

But we're tired of it. A while back we splurged on special pjs that zip up the back and triple snap. Even with the help of a handy big sister our two who are still in diapers cannot escape. If you have a child who strips off their diaper and then makes an abominable mess, you need these jammies. They are made of soft but sturdy cotton, and are generously sized. They only work their magic however when you actually put the kid to sleep with them on, which was my fatal error the night before. We only have a couple pairs of them, and they were all in the wash.



Anyway, the fact that Autumn almost always tries to get out of her pullup if it is dirty in the morning combined with the fact that she consistently comes right to one of us during the day when she has pooed tells me that maybe she is ready for potty training. This is a week off from school for my kids, so I figured it was a great time to try it with her. For three days I have been putting her in panties in the morning and she seems very amenable to the idea. I check her every twenty minutes or so, asking if she needs to go potty and if she does, she says yes and we try. It has been going really well for peepee... but each day so far, just when I am out getting the laundry or in the bathroom myself, sha-zam, she craps in her pants.

I am stymied. All my other kids learned to manage #2 on the potty before #1. I assumed that is because #2 usually gives the body a couple warnings, whereas it seems like by the time a kid realizes they have to pee, it is already running down their legs. I am going to keep trying every day until she has to go back to school, and I swear I am going to remember to check with her first before I leave whatever room she is in.

Of course, even when I do finally get Autumn out of pullups, I will still have Kimani who is going to be sleeping in a Little Keeper Sleeper until she graduates into a Big Keeper Sleeper. I don’t want to say there is no hope that she will one day do it on the potty but for now she could care less, and actually prefers not to be forced into the bathroom when nature calls.

So wish me well, and if you have any sage potty-training advice on approaches I could use for either one of them... do share.

Not an "A" in Sight

Report cards came today. I really miss the old grading system that we had when I was a kid. It was straightforward, A through F, based mostly on tests and quizzes, or special projects. The report cards my kids get don’t make much sense to me; 1-4 with 4 being the best. I don’t know what it takes to get a 4 because none of my kids ever have.

I was a solid A student from Kindergarten right on up through senior year. The only time I didn’t get an A was when a teacher went out of his way to punish my truancy and evil attitude in some roundabout manner. Back then test scores were test scores and no amount of incorrigible behavior could alter them.

But now it seems to me that grades are based on opinion. For example I have one child that devours books, all books, books well beyond his grade level... and yet he only got a 3 for reading, and not even for all of reading because now reading is broken down into multiple line items. The same kid has consistent math test scores ranging from 90 to 105, but only got a 3 in math. Because 4 is reserved for those who exceed the standards and are above grade level. I wonder how they test for that.

And Masha’s report card, well shit... welcome to “1”s across the board. They may as well have stamped a huge red F on the report. Is this what inclusion looks like? Shouldn’t I just suck it up since I wanted her to be in with everyone else? Shouldn’t she be graded by the same standards? The real problem I have with her report card is that it doesn’t mean anything... it doesn’t tell me anything about how well she is (or is not) learning. Of course she “does not meet Common Core standards—receives support and is significantly below grade level,” but is she learning well?

Why does any of this matter to me? Because I used to love looking at my line of A’s and I know just as I got a kick out of that, my oldest son feels bad that he can never seem to get the best grade. When you are doing the best you can, and that is not enough to get you the best grade possible, what does that do to you? In time he will probably begin to believe that he is not capable of getting the best grades. I wonder if that will start to eat away at his desire to put in the effort. I want him to believe in himself, to believe that anything, any profession is possible for him.

The ability to store, process, and recall information in this life seems to be one of the keys to being able to make a path for yourself that is satisfying. I want more for my kids than to just earn a living. I want them to find careers that bring them joy and excitement, and challenges. There is no shame in non-skilled jobs, but there also seems to be not much pleasure there either. I want them to be able to have what I had... a career that eventually makes Monday mornings as interesting as Friday nights. Can you get there without the best grades? I’m sure there are ways, but the reality is that racking up top grades in school is likely the fastest way there.

Ok, yeah I know... a bunch of really smart guys skipped college and made cool lives for themselves in the tech field. And yeah, I know lots of natural artists made it without college. And I know there are plenty of people who went the college route only to end up wandering through life barely making it. So good grades and college aren’t a guarantee that you will end up making a living at something you love, but mediocre grades and no college are even less likely to lead to a satisfying career.

Back to report cards. In my mind they are little harbingers of how hard or how easy life might be for my children. I realize that they are just one facet of growing up, and that there are so many other pieces of the pie of life that lead to being a healthy, successful, and peaceful adult. But still, I miss seeing A’s.

Respite

In the old days, respite was called Valium (and some days it still is) but now there are programs that actually send people to your house to give you a break so that you can cook dinner or maybe go to a dentist appointment. A few years ago we put Kimani on a list to receive respite services and then we pretty much forgot about it. Also about three years ago, I learned about a PCA (personal care assistant) program that provides you with someone to do task-based services with your child. I signed up for that too, hoping that one of these programs would come through for us.

Last July the PCA program administrators contacted me to set up a time to meet us. Kimani’s name had come up on the list. After interviewing me, and observing her, they determined that we could have three hours per evening. All we had to do was find an agency to manage the payroll and find our own PCA to do the work. Easier said than done, but I put the word out to a local college that has a special education teaching program and crossed my fingers that some student would be interested in this part time job.

Then about two months later, I got the news that Kimani qualified for an unheard of 20 hours of weekly respite and I did a hallelujah dance all around the kitchen. When the boogie ended, I wondered if she could actually have both services since they are both covered by her Medicaid waiver. After a quick call to the county, I found out that the answer was yes, as long as there was no overlap. The program coordinator brought the respite worker, Lexi, to our house to do the orientation, and the following Monday she started.

All in all, she maybe showed up four times over the next few weeks. She was consistently late and constantly a no-call, no-show. But she did show up just enough times to steal our iPad and a $50 check my son got for his 7th birthday. The program coordinator was apologetic and Lexi got fired, and we were once again without respite (and down an iPad which has caused havoc between our girls). But a couple weeks later they sent a new girl. She was pretty consistent and actually changed diapers and cooked lunch. In time I felt good enough about her to make appointments for myself. Unfortunately, it always seemed that the day I had something planned was a day she also had something come up and couldn’t come in. I realized that respite is great, but it is completely unreliable and planning on it is a fool’s game.

In November, the college resource paid off and we got the phone number of a student who was interested in the PCA position. After a couple weeks of paperwork and fingerprinting, she started work. Immediately all my girls fell in love with her. She has a younger brother with Down syndrome, and she knows exactly how to interact with the girls—high expectations, clear discipline, and an approach that sees nothing odd about them. Her name is Eva, and I hear it now all day long... Eva Eva Eva Eva... they love Eva. Eva’s job is harder than straight up respite. She has to prep Kimani for dinner, provide one-on-one support while she eats, potty her, bathe her, put cream on her, brush out her hair, brush her teeth, get her ready for bed... it is a lot especially with a little peanut who won’t cooperate most of the time. Eva does it all with a sweet gentleness that must be a personality gift.

In the beginning of January our respite worker mentioned that she was picking up another job, and that she would have to limit her hours with us. She dropped to once a week for two weeks and then was done. We immediately started the process of getting Eva a second job with the agency that provides the respite service but these things take time. So for now, we are once again without respite. Hopefully in a couple weeks Eva will be all set up and can work as many of the 41 combined hours as she wants.

I can’t even adequately explain how awesome it is to be able to cook dinner while my husband actually relaxes after his long workday, without worrying that Kimani is going to break something or get hurt. Having Eva lifts tons of stress. Of course since she is a college student, we are on borrowed time with her, but for now she is the best thing to happen for us in quite a while. I am already fantasizing that we could take her with us to Disney when we finally get enough points to go.

Kimani Lost a Tooth and I Lost my Baby

On January 4th Kimani lost her first baby tooth. It happened right before dinner. My husband was bringing her to her highchair when he mentioned that she had a tooth that was sticking up in an odd way, like maybe it was loose. I told him to hold her so I could have a look in there and just as I opened her mouth, a bottom front tooth fell out onto her lip. It is smaller and daintier than any of my other children’s, so reflective of her.

I wasn’t ready for this, not just because her teeth came in late and therefore in my mind would fall out late, but because she is still my baby. To me she is frozen in time, forever about 24 months old.

I know, Autumn is really the baby of the family... but she’s not. Autumn can talk, and count, and read Moo Baa La La La with me, and she can handle an iPad like nobody’s business. Autumn might still look like a baby, but she is actually an ordinary toddler with a rather deceptive baby face.

Kimani isn’t a baby anymore either, which this damn tooth on my desk proves.



So what now? It is hard to watch her body grow while the rest of her stays behind. It is hard to watch other children with her same extra chromosome move along intellectually while she still struggles with the basics of feeding herself with a fork.

She is this beautiful little girl with a whole lot on the inside that can’t make its way to the outside. And yet sometimes it seems as though there is nothing at all going on in there. It was easier when she was a baby because so much less was expected of her. Babies eat and poop and look cute, and she mastered that. Now, I feel like almost everyone who meets her and tries to interact with her ends up looking to me for answers, explanations, and excuses. I am the voice she doesn’t have.

When I plucked that tiny tooth off her lip, it struck me that she is growing up, without toothfairies or ABCs. Denial and I wanted to stuff that little thing back in her mouth but we couldn’t because in its spot was already the nub of an adult replacement.

The Stomach Bug

They’re all sick. One by one my family dropped, face first into the puke bowl. Ok, yeah, that is not exactly how it happened for the little girls. As I sit here, waiting to succumb, let me tell you all about it.

Friday:
In the morning our PCA called in sick. A few hours after she’d left our house on Thursday evening, she got sick and she stayed sick all night long. I was bummed for her (and selfishly for me because she would not be here to help with Kimani) but I didn’t think much of it because usually it is my kids getting people sick, not the other way around.

Around six in the evening, Masha starting hysterically crying on the living room couch. I yelled out to the boys, “What did you do to her?” and they said, “Nothing, she just started crying.” And then she threw up, for the first time ever. She was covered in slime with little brown balls of something stuck to her. My husband carried her to the tub and cleaned her up, and I cleaned up the spots that got on the couch.

“What the hell did she eat today?” he called out from the bathroom. “How would I know? I’ve never seen little brown balls like that,” I yelled back. While he continued working on her, I started the first of many loads of yucky laundry. In my cleaning, I lost track of who was where, so when I heard Masha puking again, this time off the top of her bunk bed, I totally freaked out.

“WHO THE FUCK PUTS A SICK KID TO BED ON THE TOP OF A TRIPLE BUNK BED?” I screamed it, probably 4 or 5 times, at everybody and nobody. My husband, that’s who. He retrieved her, covered once again in filth and headed to the tub, while I began the arduous task of cleaning up after her. I had to strip all three beds, and wipe each and every slat with Lysol. And I had to pick up so many little brown balls.

I called my boys in. “What was for lunch today at school?”
“Pizza.” they answered in unison.
“This is not pizza,” I screeched, holding up a little brown ball in my gloved hand.
“And hamburgers?” my oldest offered.
“Raisins,” said Jade excitedly, “They gave us raisin cups.”
“Raisins. They are RAISINS!” I yelled to my husband who was still shampooing Masha, and still complaining about how, “This shit won’t come off!”

We ended up putting Masha to bed on the kitchen table, with Autumn & Daddy on the floor nearby. We put Kimani in her bed after making it up “for quick clean up” just in case. Aside from Masha heaving on and off into a large stainless bowl, it was an uneventful but sleepless night.

Saturday:
Masha woke up feeling much better. I woke up with a cold, a backache, a migraine, and PMS. I took some meds, and things were looking up. We had planned a dinner with friends at our house which of course was now cancelled, but that did not stop my girlfriend from bringing over the 8 pound chicken she had brined. She left it with me and I roasted it up with potatoes and carrots. The house smelled wonderful all day. Five minutes before I served dinner, Autumn came to me and said, “Poo poo.” This is big news and I was thrilled to take her to the potty to see if she was for real. She sat there while my husband and other kids all started their dinner. After a bit, my sweet husband offered to switch places with me so I could eat while it was still warm. Two minutes after we traded spots, Autumn puked all over him, and thus Round 2 began.

I cleaned up dinner and we pulled out a pack-n-play to contain Autumn, who continued to go at it on and off for hours. We decided to put Kimani in a pack-n-play as well because we figured she was next, and at midnight she proved us right. My husband slept on the kitchen floor alternating cleaning up Autumn and Kimani and I slept on the couch nursing my cold and cramps.



Sunday:
By Sunday morning it was all over (we thought). The girls were bathed, the pack-n-plays were scrubbed and put away, and multiple loads of nasty laundry was done. Everyone was tired. My boys spent the day again quarantined in their room playing computer so that they would not get sick. That night, after all the kids were in bed and all the backpacks were packed, my husband and I sat down to enjoy the ProBowl. Afterward we went to bed, congratulating ourselves on handling the 2014 stomach bug like true pro-bowlers ourselves.

Monday:
At 3 a.m. (which in my mind is still Sunday night) I got up to go pee. My oldest son heard me and called out, “Mom, we have a problem. Jade puked all over himself.”

I really wanted to cry.

But instead I woke up my husband and we got to work. He cleaned up Jade while I cleaned up the bed. Jade and my husband slept in the living room and by now you know how that went. At 7 a.m., I got Masha and Autumn up and off to school. Gecko was fine, but I was worried he wouldn’t stay that way, and sure enough around 9 a.m., he started vomiting. My husband decided that he too was sick and fake slept the entire day on the couch, although he has not actually gotten sick yet. Maybe he had just had enough. So I spent the whole day swapping out puke bowls, bringing sips of water, and scrubbing.

As I wrote this, Gecko was still having at it. My nerves are shot wondering if I am going to get it. I have eaten almost nothing but Oscillococcinum, Elderberry syrup, probiotics, and garlic. Alright, I did have that sliced garlic on a delicious sandwich made with left-over chicken. I have also downed a 2 liter of Mountain Dew, not because I think it will help but because I need to stay awake.

The stomach bug is probably the worst part of parenting. I’m crossing my fingers (and scrubbing my hands) that it doesn’t get me too.

Why TUC, Why?

Why did you have to go and write about White Privilege?

"Now we know you are a closet racist."

"You don’t have the right to talk about racism. You are white. You can’t understand."

"People like you are the reason why inequality continues in this country."

I’ll tell you why I am writing about it. It’s because I am thinking about it. It’s because I have two sons born with the original sin of White Privilege upon them.

A while ago I read a blog post, When You Carry Your Difference on Your Skin, that included a story about how the author had to explain to her non-white son that he could not take toy guns to the local park,

"There was a day when I had to talk to him about how it wasn't okay to play with realistic looking guns at the park, and had to tell him why the white boys he was playing with likely didn't have to worry about that kind of thing."

The post was good and worth a read. But, while reading that post, it dawned on me for the first time that people proactively teach their children that their experiences in identical situations will be different than my children’s because of their skin color. She was teaching them that my sons have White Privilege.

Ok, so I am going to be real honest here... my first thought was, "OMG, her children are going to grow up resenting my children. She is implanting a chip on the shoulder."

I understand why she needs to educate her children about the discrimination they might face and the risks it imposes on them. (Read that sentence again before leaving me a comment ripping me on this.) But I am pretty confident that telling your kids negative stuff about whole other groups of people can lead to their mistrust and even hatred of that group.

The author and I had a, tenuous at best, FB relationship based on us both being the mother of a child with Down syndrome. I could have kept my mouth shut, but people who do that never learn anything. So I asked about it. Lots of people answered, and I learned that raising my kids to be color-blind is not the right way to work toward racial harmony. I also learned that trying to talk about difficult stuff with people who barely know you ends budding friendships and cultivates silence.

But I am not going to be silent. I am going to talk about race, and say that I do not know the right way to talk to my children if teaching them to see people as individuals & colorless is wrong. I do know that my children were born innocent blank slates, and regardless of the systems they were born into, they are still as yet, innocent. And they are still very much blank slates. I not only have a right to talk about race, it would seem that I also have an obligation to do so with them.

And now this has become a very sticky thing because I am not clear on or convinced about White Privilege and how just my existing within our current systems is somehow perpetuating racial inequality. And I am not going to tell my sons that they are, because of their original sin, privileged oppressors. I am guessing I am not alone in this. That said, I am in search of the right words, the right narrative... one that will grow them into caring people guided by a belief in truth, equal opportunity, and justice for all people, regardless of gender, physical ability, skin color, nationality, sexual orientation, weight, attractiveness, or intellectual ability.

My next step is reading Chip Smith’s The Cost of Privilege: Taking On the System of White Supremacy and Racism.Perhaps he will explain to me what my role as an individual and a parent is if I want to be a part of ensuring that all Americans have the baseline existence that I have.

I’ll let you know what I learn.

Dumped from Hippotherapy

Two letters came in the mail, one for Masha and one for Kimani. Masha’s letter welcomed her back to the spring session of hippotherapy and invited us to set up her riding day/time...

The other letter informed us that "it has been determined that your child could benefit from a break at this time due to safety issues. You may reenroll at a later date if it is determined that Kimani is able to demonstrate safety necessary to be in the arena and on the horses."



I am crushed. This is a program designed for kids with special needs. Aside from pool therapy which ended with pre-K, this is the only therapy that Kimani has shown interest in and even clearly enjoyed. And she benefited greatly from it. We saw her begin to use her right hand, as well as begin talking again. She would get so excited when horse day arrived. She’d bring me her horseback-riding PECs card and her shoes. She would vocalize all the way to the barn and back.

I am angry. How dare they dump her because she requires more support, more effort on their part. This is not about safety but rather about her being a lot of work. She never did anything wrong toward the horses (other than try to eat their after-ride snacks). She never ran off in the arena. And though she sometimes leans to one side while on the horse, she never jumped off or threw herself off the horse. And how the heck are we supposed to “demonstrate safety necessary” if she has no horse to practice with?

Yes I am going to try to change their minds. Yes I am going to try to find another program. But damn, I am tired of fighting the “normal” system and now I have to fight for her in the “special needs” system too? And the reality is that she probably will not be able to get back into this program or any other hippotherapy program any time soon.

What Is Privilege?

Most theoretical discussions become entangled in semantics, either deliberately because it is a way to push a narrative, or by default because often times the proper words don’t exist to describe a situation or phenomenon. In my mind this is what is happening when we discuss privilege.

Privilege is:

a right, immunity, or benefit enjoyed only by a person beyond the advantages of most:

Beyond is the key word. If you are fully enjoying the rights, immunities, and benefits provided under our constitution and sets of laws, then you are not privileged but rather “baseline”. Privilege comes when you, for any reason, have extra rights, immunities, or benefits.

If you are for any reason being kept from fully enjoying those rights, immunities, and benefits, then you are the opposite of privileged, operating under the baseline. The word most often used to describe this situation is under-privileged but I would argue that in this case disenfranchised makes more sense. Why? Because it is assumed that if you are not under-privileged, you are “privileged” and that is not necessarily the case. All of us who exist at the baseline are also under-privileged in the sense that we do not enjoy any rights, immunities, or benefits beyond the basics afforded to us by our laws.

Continuing on, if you are being denied a basic right and I am not, that makes you disenfranchised but it does not elevate me to a status of privileged. This is where I see the arguments for privilege in general breaking down. For example, if you are not cisgendered and are harassed for using a public restroom that does not match your physical makeup, that does not make me automatically privileged because I am cisgendered and do not suffer said harassment for using a bathroom that does line up with my physical makeup.

In other words privilege, baseline, and disenfranchisement are not necessarily a zero sum game. You experiencing discrimination does not make me privileged for not. If I was sexually abused and you were not, that does not make you privileged. If I got accepted only into a state university but you, with similar grades, had your dad call his friend, the president of Harvard, to get you accepted there, then you are privileged.

There is another definition of privilege that pertains to this discussion:

any of the rights common to all citizens under a modern constitutional government.

When using this definition it is much easier to ascribe the status of privileged to anyone in this country who is able to partake of the rights, immunities, and benefits afforded to us all in our constitution. This status of privileged is citizen specific, not skin color related.

However, because the set of rights, immunities, and benefits that exists in the USA was not completely equal for all people from the get-go (and still is not), systems and cultural attitudes (stereotypes) arose that disenfranchised various groups of people. For example, there was a time when women and African Americans did not have the privilege of voting. In order to justify this, narratives concerning intelligence and emotional stability were created. While we now have the right to vote, the stereotypes that were created to support disenfranchising these two groups of people have not dissipated. For example, think back to when Hillary Clinton was running in the presidential primaries. Messaging was developed based on the “emotionally unstable” stereotype. For a couple hundred years, the systems in place have neglected to include non-white examples (and where applicable, female, GLBT, non-ablebodied, etc) in an equal way. This is slowly being rejected and fixed.

And when it is finally fixed, we will all be baseline under the first definition of privileged and equally accessing our privileges under the second. And yes, there will still be those who truly are privileged by their wealth, fame, or position.



Responses to some of the thoughts raised in the comments on my last post:
To some degree I think our differences have to do with how we define privilege. I do not agree that if I am able to participate in the set of rights, immunities, and benefits afforded to all US citizens that I am privileged. In my mind, that makes me baseline. Having the “rules work for me” doesn’t make me privileged. Having the “rules not work” for someone non-white does make them disenfranchised and we all need to be cognizant of that and working to change it. To insist that my white skin has brought me benefits beyond the basic rights and opportunities that I was born into, assumes that there have been racists in my life who have promoted me above someone non-white who was better suited or more qualified than I. (Jisun, that is where I thought you were going with your first comment but I saw in your follow up that you did not mean that.)

As for judging books by their covers, I would agree that happens due to the stereotypes I talked about in this post. Is that wrong? Yes, and each one of us needs to continue working to change it. Does it automatically make me white privileged? The answer to that is situational. Sometimes stereotypes work for you and sometimes against you. Take this scenario: there are 4 people in a corporate technology office, a male African American, me, a female Asian, and a male Indian, and a new boss, who knows none of us personally, walks in looking to make a snap judgement on who is the hardest working, smartest person to do a special project. I likely would not be the one chosen.

White, Thus Privileged?

I have read that because I am white, I am privileged. This idea was just beginning to percolate in higher education when I was doing my Masters in Critical Theory, but it wasn’t yet clearly articulated and thus I didn’t get brainwashed into believing that being white was a privilege I was born with.

I loved the work I did in my Masters program. We focused on the “Other” and how the other was, and is, marginalized in various cultures, particularly in relation to conquest. We studied the power structures of ideology, and narrative control. By the end though, I was frustrated. I felt like all we did was read and deconstruct stories and ideas, but nothing we talked about changed anything in the world outside the university walls. Finally I asked one of my professors how any of this elitist work would effect change. She basically answered that it rolls down eventually.

Now more than twenty years later I see that she was right. All those philosophers, whose works are impenetrable to those with average vocabularies, have been crafted into narratives that can be spoon-fed to the masses. A lot of good has come from that; Fair Trade products, GBLT freedoms and rights, the end of Apartheid, and an overall understanding that human rights matter, just to name a few.

But with this explosion of important ideas has come a progressive message that includes the narrative that whites (in the USA at least) are privileged. In the past year or so I have been inundated with this idea in FB comment threads, blog posts, and cable news. Friends of mine throw it around apologetically, treating it like an ugly family secret that is finally out. And honestly, I just can’t buy into it.

Cue the eye rolls, disgusted sighs, and angry huffing... but I have never experienced privilege for being white. I may have gotten a few perks (or out of a few tickets) for being young, female, and beautiful (and part time rich —explained below) but that is about it. I grew up with a working poor mom and was treated like white trash all through school. I got into college on my grades, awards, and scholarships. I failed out for not trying hard enough, then went back and got good grades based on my work, not my skin color. I took a third-shift, entry level job at a bank just to get health insurance. I worked my way up on skills and effort, not skin color. When I moved to my first really good job, my hiring manager was African American. I don’t think she hired me because I am white. I worked hard for her and she threw opportunities my way. I married an average white boy who wasn’t very privileged either. Together we built a life with enough kids to force me into the role of SAHM thus cementing our place as part of the Working Poor.

What I learned throughout my life about privilege is that it comes with lots of money, fame or position, no matter what your skin color is. Ask Jay-Z & Beyoncé, or Oprah, or President Obama’s kids. Or ask me when I was visiting my Dad’s house as a teenager. My dad came from immigrants, struggled through college, worked his butt off, and built a company. Compared to the neighbors in his town, he was the rich guy and so I was the rich kid. And all the people there treated the pretty little rich girl like she was privileged. Imagine that: white trash in one world, rich girl in another... same white skin.

I am not saying that there are no situations where a person who was white was treated better or different than a person who was not, and our justice system is a good reflection of that. But I do maintain that I don’t owe anything to being white, and I am not going to accept some sort of shame or debt for it either. As a human, my moral and civic duty is to treat all people (regardless of skin color) with respect and an initial assumption of individuality & inherent goodness, and to raise my children to do likewise.

The Red Container

About a week before Christmas my son Gecko and I made chocolate fudge, the same chocolate fudge I used to make with my first stepmom when I was a little girl. It came out just as delicious as the fudge in my memory. But what’s a girl to do with 5 pounds of fudge? You know it, I packaged some up in a red plastic Christmas container and sent it off to my dad in Tennessee.

When he called on Christmas Eve to thank me for it, I could barely understand him for his mouth was full of melting chocolate fudge. I was pleased that he was so happy about the homemade treat delivery. And that was the end of it... until today when a package from my dad came for me in the mail.

Right away I knew it was the red container finding its way home. My husband asked, “Why would he spend $2.89 to send that back to you?” I laughed, and before even reading the note tucked inside it, I replied, “So I can refill it.”

The typed note folded inside the red container was so adorable that I have to share it with you.

The Red Container
I am just a small, lonely, empty red container.
Once I was filled with sweetness that brought joy and love.
Little by little my contents faded away into the belly of a whale.
The whale was very happy but I, I grew empty.
At last there was nothing in me anymore and I languished quietly,
hoping I could go back home to be filled with love again.
The whale grew restless and put me in a big dark envelope and told me,
“Go forth and be filled by your young mistress far away.”
What will happen to me when I get home to my lovely mistress?
Will she fill me with love and send me out again?
Ah, the heavy questions in the life of an empty red container.

Am I making fudge for St. Valentine’s Day or what?

Has the Onion Gone Too Far?

I am not a fan of dark humor. This is mainly because, well yeah, it attempts to make jokes of things that most people find hurtful or offensive. Ridiculing illness, poverty, injustice, natural disasters, oppression, and the like, is just not my cup of tea.

So you can probably guess that I am not a regular reader of the Onion. To their credit, they do post some funny stuff that does achieve the goal of good satire by poking fun at politics and other scandalous matters. These articles usually make it to Facebook and I have been known to give them a click.

That is sort of, but not exactly, how I came upon the Onion’s 2013 Holiday Gift Guide. In this case, a furious friend and fellow advocate posted it to a FB group I am in because this time they hit too close to home. The gift list includes petrified dead babies from Pompeii, terminally ill dogs, prosthetic legs for dads who have lost theirs, and white babies that *might have Down syndrome.

While I was checking out the offensive post, I noticed that the cover page post was a tasteless piece reporting on how “thousands of Americans will notice the first signs of dementia in their parents this holiday season.” Hardy ha ha ha, that is so funny, not. After poking around the archives for a while, I found lots of similar not so funny posts.

In fact, if you do a search at the Onion on Down syndrome you come up with plenty of insulting and dehumanizing posts. Back in ‘08 they even referred to Sarah Palin’s son Trig as retarded. If you want to bitch about an Onion post, well folks start there.

The Onion’s 2013 Holiday Gift Guide is not funny, not even the parts that have nothing to do with Ds or dying dogs. But this isn’t THE post where they went too far. That happened long ago. To read that gift guide post, and only complain about the fact that Ds was mentioned feels wrong to me, like maybe you think the rest of it was perfectly fine. I doubt the children of wounded warriors whose dads are just getting used to their new legs or the people whose dogs really are dying right now agree with you.

My point here is that the Onion is in the business of being offensive. It is dark humor. And listing a white baby who might have Ds for sale is just one of the many offenses on that list and on that site. If you want to cry foul, then maybe you ought to scream it from the top of your lungs for more reasons than just Ds. And maybe you should stop reading the Onion and stop buying from their advertisers. Write an email to the Mormons and tell them that buying ad space there rubs you the wrong way.

I sent an email to the Onion’s CEO Steve Hannah letting him know that I thought the majority of the list was offensive. Then I let him know that people with Ds have it hard enough without “funny” publications like the Onion making their hill even higher. I also informed him that $1275 is a ridiculously dirt-cheap figure for a white baby with Down syndrome. We paid $27,000 for ours. I am sure my note ended up in the trash folder along with thousands of other emails complaining about thousands of other hurts.

If you feel like writing to the Onion to let them know that Ds is not something to make cruel jokes about, please do: publicfeedback@theonion.com.

And, if you have $1275 you want to spend (or even $5) on giving the gift of a baby with Down syndrome, please check out my friend Nykki’s donation site. She has had a certain little man with Ds on her Christmas list for quite some time now.

A Signed Copy of Sun Shine Down Goes To...

Between when I reviewed the book, Sun Shine Down, and when I pulled the winner, I talked to the author Gillian Marchenko and she agreed to sign the winner’s copy of the book. How cool is that?

And that winner is Amanda, #3 on the comment list. If you would email me your complete name and address at ds.mama (at) yahoo (dot) com, I will pass it along and your prize will be on its way to you.

For those of you who didn’t win, contact your local library and ask them to carry a copy. That way you and many others can enjoy the read for free :-)

Mom, You’re a Hypocrite

That is what my ten year old son said to me as he walked out the door on his way to school one day last week. Ouch, it stung a little. Let me tell you what happened and you can decide if he is right.

In an effort to raise my kids as non-sexist as possible, I encourage them to make choices about toys and whatnot based on what they like, not whether it is made for a boy or a girl. When we go through McDonald’s drivethru for happy meals and the speaker asks, “Boy or girl toys?” I answer with the question, “What are the toys?” After hearing the options the boys decide what they want, and sometimes it is the girl toy.

When the boys lined up behind Masha and Autumn to get their nails painted a couple weeks ago, I gave them several colors to choose from and daddy painted their nails right along with their sisters’. You might even recall that a few years ago I bought my oldest son a pocketbook and he took it to school on and off for a couple weeks.

I know that my boys have gotten chastised by their peers for their gender-bending. While the purse still hangs in the Gecko’s closet, filled with hidden goodies, he no longer takes it out of the house. Jade came home from school after wearing the nail polish and told me that the girls in his class told him that he isn’t supposed to wear nail polish. That night, after boy scouts, I asked him if anyone noticed and he said that a boy laughed at him and called him a girl. His answer? “No, I am still a boy and I am my own person.”

It is hard to let them make their own decisions about this stuff knowing that the odds are they will be made fun of, but it feels worse to force them to comply with our society's unwritten gender rules. Actually, it feels so asinine trying to explain why they can’t wear nail polish or carry a sleek bag with lots of pockets that I would rather they just do what they want.

But then I blew it.

Masha has an awesome winter coat. It is thick, plush actually, with stitching on it that looks swirly. The hood and sleeves are edged with faux fur of the same deep blue color as the rest of the coat. She looks all set to travel to Alaska every time she puts in on. She hates it. She really really hates it and refuses to wear it. I had to swap it out with a lighter-weight suede coat.

On that morning, she once again refused to wear her awesome coat and Jade piped up, “Can I wear it mom? I love her coat.” And I said, “No.” Then I pushed him out the door with his handsome navy and yellow winter coat. Gecko was stuffing his backpack while this was taking place. He was the last one left in the entryway and on his way out he said it: “Mom, you are a hypocrite. Aren’t you the one who is always telling us it doesn’t matter if it was made for a boy or a girl; you can choose what you like?”

My brilliant comeback was, “Just go to school, okay?”

I’m making up for it though. A certain little somebody wants an Easy Bake Oven for Christmas, and he’s getting it.

Sun Shine Down - Review & Giveaway

I like books that can make me cry, and true stories - memoirs - that make me cry are even better. In fact, if you write a memoir and I read it and don’t cry even once, then I wonder what the heck you wasted my time for. If I borrow your life for a while, I want to feel something I have never felt in my own. Sun Shine Down by Gillian Marchenko accomplishes that. And considering I have lived through my own birthing of a child with Down syndrome, that was no easy feat.

Gillian is an American married to a Ukrainian and living in Ukraine when she gives birth to their third child, a girl with a surprise diagnosis of Down syndrome. The birth itself was traumatic and the aftermath was even worse. Gillian found herself in the inbetween space of wanting to, and knowing she is supposed to, love her baby and not quite being able to. She is both physically (the newborn is in the NICU for weeks) and mentally separated from her child. Her story is one of how she found her way to loving Polina.

I think most people take loving a baby for granted. You just assume it comes naturally, and in most situations it does. But sometimes when our expectations clash with our reality, love does not come easily. Gillian turned to many outside sources for support. Some good, some dangerous. The book is very honest about her sorrow and depression (which she was always prone to.)

The book is a little shorter than your average memoir, but I actually appreciated not having to wade through her whole life history or every needless NICU detail. She focused on the things that mattered, and she writes about them so artistically that I could not evade feeling what she did. Most Christian writers (Gillian is a born again Christian married to a pastor) can’t help but let their faith drive their narratives, but not Gillian. God was in the book but he wasn’t the “fix.”

The climax of the story is obviously that Gillian falls in love with Polina and even though you know it has to come sooner or later, when it does you’ll get chills and you might just find yourself crying again. In most stories, the resolution is the last thrill you get, but not in this story... Gillian included an epilogue that brings you back to Ukraine where you get to meet the girl who will become their fourth daughter. Those last paragraphs left me wanting more from her.

If you are looking for a good read to curl up with this winter or a great story to give as a gift to your favorite reader, Sun Shine Down will do the trick. If you’d like to score a free copy, leave a comment below. I will pick a random winner in a week or so.

The Family Portrait

I am a scrapbooker. It’s an addiction. But, no matter how much I do it (and have done it for over ten years) I am never caught up. The other day I was working on layouts from a family cruise that we went on back in 2001.

My dad took us. He took us all—his mother, his aunt, all his children, all his grandchildren—on an 11 night cruise to the deep Caribbean. One of his brothers also came with his wife and children. At the time, my husband and I only had one child, his daughter TK. She was about 8. It was a wonderful vacation filled with visits to beaches, and ruins, and jungles, with giant blue butterflies and slippery stingrays.

One of the things I love best about cruises is formal dinners every night. I love dressing up. Look at us, lol, we look like the Addams family.



There is another photograph, a family portrait taken of the whole group of us together. It was that particular picture I was scrapping when a thick sadness overwhelmed me. I wanted to print all the names vertically on vellum paper to stick next to the photo. As I was staring at the faces, typing the names, it struck me how broken and gone my family is.

The greats and grands in the photo have since died. I adored my grandmother, and I still miss her. But, old ladies dying in their nineties is not the sad part. Divorce is the sad part. There are people missing that I loved. They were my family and they are no more. And because the wife is gone, so are her children. I showed the picture to my sons and neither of them could name half the people in it.

If that picture had been taken ten years earlier, there would have been a different step-mother for me and a bunch of other step-siblings. Going back even further, there would have been still another step-mother, another aunt, and different cousins... Divorce has divided me from my family since I was a year old and my parents divorced. My paternal grandparents are divorced. Every one in my parents’ generation (both sides) is divorced, some more than once. My generation on my side and on my husband’s has not gone untouched by the disease. I wonder what the family picture looks like ten years from now. Will my children still have all their aunts, uncles, and cousins? I doubt it, and my heart breaks just thinking about it.

We scrappers joke around that if you piss us off we will crop you out of our layouts. Ha, in this family, we divorce you out of our layouts.

I hate divorce. I hate how it breaks apart families, unit by unit, until there is nothing left but scraps in a photo album.

Tomorrow I will have a lovely dinner with my family of seven, and one set of grandparents. Our kids have three sets total, and that is not going to change for them. They will never have to learn to love a new grandparent or to forget a discarded one. Only the natural circle of life will separate them from their grands. For that, I am thankful.

I admit though, I am jealous of you who have generations of intact families. You are out there right? You do exist?

Kitchen Musings

1. We spend about $1000 a month on groceries (and cleaning supplies that I hardly have time to use and don’t know why I am always replacing.) Every week one of us makes a run to the wholesale club and to Walmart. And then there are still multiple trips to the market down the road for the daily essentials like fresh vegetables and whatever thingie I forgot that I must have for tonight’s dinner.



Oh wait, that’s the problem. Every night I stare blankly at the monthly menu planner clinging to refrigerator door. Tonight’s imaginary dinner sounds delicious, as does last night’s and tomorrow’s. I wander back and forth between the refrigerator/freezer and the pantry, opening one and then the other, making mental notes of the possibilities and... I am stymied. How come there is never anything to make for dinner in there?

2. Many many moons ago an old witch gave me a heavy, short, fat, square, green glass bottle filled with some sort of potion that was supposed to magically make my step-daughter TK’s mother’s boyfriend get hit by a bus become a nice guy. I dumped out the liquid spell on the back lawn (sorry TK) and then used that beautiful bottle to house my dishwashing soap all these years. About a month ago Kimani climbed up on the counter and smashed it on my granite countertop. Then for good measure she tossed what was left of it onto the floor where it shattered some more. That green bottle broke into a million sparkling pieces that took me forever to clean up. Not one of them landed on Kimani.

And now I can’t do dishes anymore. Ok, well, I can’t peacefully do dishes... because I have nothing to store my soap in. I keep having to drag out an oversized bottle of Dawn (Remember the trips to the wholesale club?) from underneath my sink. I squirt some into whatever small dish is handy and I use that to wash the daily pileup. Every time I have to dip my sponge into the dish, I wonder what other people do with their dishsoap. I think about those plastic pump bottles that always have dried up soap on them, like a used taper candle. I don’t want one of those.

3. Last Christmas my bestie got me a pressure cooker set. It saved my life. Ok, that is a slight exaggeration but it saved my sanity which is tightly tied to my life so yeah. I have since learned that almost everyone I know is afraid of pressure cookers. Have no fear, this is not your mother’s pressure cooker, it’s your great-grandmother’s. (During and after WWII pressure cooker manufactures, of which there were quite a number, started using cheap and available light-weight aluminum; and the blow ups followed. Those days are over. Pressure cookers are well-made once again.)



It takes a bit of practice to get the hang of it, but pressure cooking is definitely the way to go for about half of what I cook. (Which according to #1 isn’t much these days.) At first it was all about the time-saving. Every evening, hundreds of (ok five) hungry children start whining and I realize it is already 5:08 p.m. and I have not even started staring blankly at the menu planner yet. What to do, what to do? It is so hard to think with Autumn tearfully clinging to my leg begging for food. On autopilot I get out the pressure cooker and my favorite cookbook and a half hour later they all love me again. Now it is my go-to pan because food made in a pressure cooker tastes better. It’s true. You should get one.

4. Pan drippings, what the heck do you do with them? At least once a week I end up with a pan (usually my pressure cooker) that has an inch or so of left over meat juice. It is too slimy to dump down the drain and too watery to dump in the garbage. I could sop it up with handfuls of paper towels and dump it in the trash, or leave it overnight and hope it congeals enough to scrape it into the trash, or scrounge up an empty carton or can to pour it in before placing it carefully in the garbage bin... or I could toss it on the back lawn (in the same place as the magic potion) but then the coyotes might smell it and come eat our cat. (That happened once. It is a horrible story, a funny and horrible story which I will eventually be forced to tell you because some cat lover out there now thinks I am evil for using the word funny to describe a story in which the family cat gets offed by a coyote. When you laugh during the funny part you will forgive me.)

Whenever I am faced with the grease dilemma, I remember that I really want to buy a grease separator. I have this fantasy that if I can get the actual fat out of the pan, the rest can be safely poured down the drain with a swish of scalding hot water. The grease will thicken up nicely and can live out the rest of its life in a paper towel in the local landfill. Is this possible? Do any of you have a grease separator? If not, what do you do with your pan leftovers?

School Bus Blues

When Masha started General Education Kindergarten last year, she was transported to and from school on the regular ole bus with her big brothers. It wasn’t long before the problems started. She wouldn’t keep her seat belt on and it got worse from there.



(Do any of the other kids on the regular bus wear their seat belts? Uh, no.)

But she started moving around too much, leaning over the seats, bothering other students... and spitting. Apparently someone on the bus modeled that for her and she picked it up lickety-split. I fielded phone call after phone call about how bad she was, and I tried idea after idea trying to get her to behave. I even begged, bribed, and forced her brothers to take turns sitting with her to try to keep her behaving in a positive way. That only made things worse, and in retrospect it probably wasn’t my best idea ever.

The bus ride is so boring for her. Other kids sit together and chat, or they whip out their handheld electronic games and play. Kids socialize on the bus, at least that is how I remember the long daily rides when I was a kid. Masha sits alone and she has no games to play. The special books I sent for her to only have on the bus turned into projectiles. Eventually she started kicking the windows, causing the driver to have to pull over to deal with her. The school refused to provide an aide, so I suggested a 5-point harness seat belt.

Instead they kept pushing for her to ride on the special bus, and I had no ideas left, no fight left... so I agreed to try it. I figured they would work with her, teach her the proper way to ride the bus and that before too long she would be back on the regular bus.

Oooh, lesson learned. If it goes on the IEP, it is LAW and it is a nightmare to get back off the IEP. The little bus came with an aide and a harness that I had to strap on her everyday over her clothes/coat. Once on the bus, they literally clipped her to the seat by the shoulders and lower back using the metal loops on the harness. The aide also coddled her. She waited outside the bus and took Masha’s backpack for her and then helped her up the steps and into her seat, allowing her zero independence. Since this bus is used for multiple children with special needs across multiple schools in our district, Masha’s bus ride became much longer, and she was forced to leave class 15 minutes early everyday to get loaded onto the bus so that it could depart prior to the regular bus loading frenzy. A couple weeks lasted months.

One day, while waiting with Autumn and Masha for both their buses, a very bad thing happened. I forgot the harness. When Masha’s bus came (before Autumn’s this time) they refused to take her on the bus without it. I was stunned. The kid can’t ride on the stinkin’ bus one freakin’ day without being strapped in like a convict? I asked them to wait for me to drive up our (sorta long) driveway to get it, and they said they did not have time for that. At that moment, I forgot that I am a nice lady and became Psycho Bitch. Seriously, the rope snapped, kwim? Masha was standing on the bottom step of the bus while the aide was trying to talk me into taking her back home, and I said “No. No fucking way!” (Yeah, I took a lot of heat for that one. Sorry parents of those kids on the bus that may or may not have heard me.) I turned around and stuffed Autumn (who I was holding the whole time) back in the van, jumped in and drove up my driveway with Masha still standing on the bus step.

Yup, they waited for me to return with that harness. But I decided right then that Masha was done riding that bus. I insisted that they begin teaching her what is expected of her. I demanded that she be back on the regular bus within a week or so of practicing without that contraption on her.

And it all worked out just fine. Then over the summer, she attended camp for 6 weeks. She rode the full-sized camp bus every day with no problems, and I was one proud mama.



This Fall, she started off on the regular bus again and everything was going just fine; until I got the phone call today. Masha is taking her coat off and opening her backpack and throwing her stuff on the bus floor. And although she is staying in her seat belt, she is getting up on her knees and looking over the seats. She is causing her driver so much stress that he “missed a turn down a street one day last week.” I felt like pointing out that this dude backs over the mailboxes at the end of our road once a week, what’s his excuse for that? But instead it went kinda like this:

Me: I fail to see the problem with Masha removing her coat. In fact, if Masha can now unbutton her coat, that is an OT goal completed and I am impressed.
Principal: It’s cold out now.
Me: Yeah, Masha will figure that out.
Principal: blah blah blah blah
Me: No, no special bus. How about an aide?
Principal: blah blah blah blah, probably not.

I am tired people. I am sad. I am feeling defeated. (But mama, SHE KEEPS HER SEATBELT ON!!!!!) Yeah, there’s that. That’s big. So I suggested we try more detailed social stories, and I have a few more ideas up my sleeve but really the problem is not going to be solved anytime soon.

Because the real problem is that she is bored and lonely on the bus. No kid sits still and alone, day after day, with nothing to do but stare out the window for forty minutes. Am I right?

Unschooling Kimani

So remember back over the summer when I freaked out about the unexpected additions to Kimani’s school Behavior Plan and said I was thinking of homeschooling her? Well, I did it. I mean I am doing it. Sort of.

First off I have to say that I am super proud of myself for attempting this. I could have been a SAHM with no kids at home during the day which theoretically means I could be working out at the gym five days a week, planning and executing gourmet meals, finishing the book I have been writing for three years, or maybe just sleeping all day long. But instead, I traded in my freedom to give my precious Tasmanian devil a safe and happy Kindergarten year at the Mommy Academy of Table Dancers.



I suck at this. I knew I would. I told you I would. I bought a bunch of stuff to work from: the big Preschool lesson plan book, a bunch of manipulatives, and edible arts and crafts supplies. I managed (on the third try) to write an acceptable homeschool plan for our district and met with them to rework the IEP so that therapies could still happen. (That is not really working out, but it is a whole separate post.)

In September Kimani played along. We went bowling and grocery shopping with PECs cards. We went apple picking and visited a farm. We studied the color red and the math concept of One and Two. We dressed the weather froggy and painted pictures. We played on the iPad and read Moo Baa La La La. Sounds great right? Well it wasn’t great. It was tortuous because one of us is extremely, ahem, self-directed (okay, maybe we both are). By October she was not willing to play along at all for the things she doesn't care about.

She and I both learned a lot in that first month. She knows that two, when it comes to yummy things, is more desirable than one, and given the choice she will say, Two. She can now say apple. She can jump on her trampoline for long periods of time without holding on to the sides. She knows the difference between pink and red. She now knows that the grocery store gives away cookies to little girls and will say cookie as soon as we enter the store. Because her receptive learning ability is higher than her ability to express herself, these little milestones mean that she is really picking up quite a bit. I learned that she does not want to do anything schoolish. Put a puzzle together? NO! Draw a line (or heck, hold any writing utensil and make any marks at all) NO! Sit for any book other than Moo Baa La La La? NO! You get the idea.

I also learned that she loves to do things that are real, like cooking, shopping, or outings. She prefers playing with whipped cream over playdough. She prefers loud dance music or sitting on the piano and tapping the keys with her feet to playing with toy instruments. I learned that Kimani really understands the PECs system and wants to use it to communicate. I learned that she prefers unschooling to homeschooling. And so now, I am trying to incorporate pre-K level science, math, literacy, etc. into everyday activities that she is willing to participate in. Tomorrow a special education teacher is coming to visit. We might be adding an hour a week of consulting time to the IEP, depending on how impressive she is.



I also learned that while it does make me crazy to never have any alone time anymore, the trade off of getting her all to myself for hours on end is really cool. It has been a long, long times since she was my only child at home. Everyday I see advances albeit teensy tiny ones. Some days I am really encouraged that she is more educable than I had realized. Other days... well on other days, I try not to think about what this looks like in three or four years. One good or bad day at a time, right?