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.

Some Kids Are Hard to Raise

It’s true, I assure you, there are children out there that are very hard to raise. I know this is a fact because I have one. If you don’t believe me, or just wish I would shut up now, you probably don’t have one.

If I had a dollar for every time I heard the words, "Oh, I could never do what you do" or the incredulous, "How do you do it?" my husband and I could go on a sweet vacation. (Oh wait no, we couldn’t because getting a babysitter for our kids is next to impossible... mainly because of that one.) And then there are the opposing comments from within the disability community, "all parenting is hard" and "there are no guarantees when it comes to baby-making."

Both of those messages are simplistic and dismissive toward the plight of a parent of a difficult child.

Let me make it clear that Kimani is not hard to raise because she has Down syndrome, she is hard because she is hard. My other two girls with Down syndrome are not hard to raise. Yes, people with disabilities might bring with them some complications that make your life less simple, less easy but in most cases the disability itself is not the ticket into the "hard to raise" club. And many, many children without an identified diagnosis or any label make it into the club by the time they are teenagers.

To you who compliments me says you could never raise Kimani, how come you never mention what your alternative would be? Would you institutionalize her? Kill her? Kill yourself? Adopt her out? Just curious.

To those who say that all parenting is hard. Yeah, it is. I have five other kids ranging from age 20 to age 3, and I know that there is work, heartache, and stress involved in raising children. But you need to understand, there is hard work and then there is HARD. So please stop silencing those who have situations you thankfully cannot even dream of. I know I am not supposed to spoil the narrative or god-forbid reinforce incorrect and outdated stereotypes and hopefully this post is not. (You read the part about this not being an issue limited to a specific disability or even disabilities in general, right?)

What makes a child hard to raise? I suppose each case is unique and complicated. It is like the perfect storm. And in that way, it is true that you never can be sure if your reproductive efforts will take you there.


(Hey snarkers, did TUC really let her kid pull her other kid’s hair while she took pictures? For the record Kimani was being verbally directed to cease and desist by her father who was 2 seconds away from rescuing Autumn.)

What are the characteristics of a hard to raise child? Well, now I only have mine to go by but I would say that if your child:
-- is not responsive to the usual (ok and even unusual) behavior reinforcers;
-- has no empathy toward others;
-- shows little or no affection;
-- is aggressive or violent toward themselves and/or others;
he or she is probably hard to raise.

I’m not just whining "Oh woe is me" or venting. I am telling you this for a reason. It is important that we allow parents of difficult to raise children to talk about it. We can’t keep telling them to STFU because they are somehow hurting the message. That message is still valid. This is not about Kimani. Kimani is fine. She is happy and she has all her needs met, and from her perspective life is as good as it gets. She deserves that. It is not her fault that she is hard to raise and she is in no way punished for it.

We the parents are the ones who are punished for it. If we are honest, and step off of the pedestal, we are judged as bad parents. If we keep up the facade that our child is mostly like your child, and that we have it all under control, we suffer from an indescribable loneliness and constant guilt.

But I am done with all of that crap because I am an awesome mother to a child who is really hard to raise.

On Becoming a Monster

How does a good mom become the mother that kills her child and herself? With just a little research into the question, you find that mothers killing their non-infant children and themselves are a rarity. The reason why it happens is usually attributed to a severe mental illness (depression), guilt, and a desire to "save their child" from something.

There has been a lot said about the Kelli/Issy Stapleton case (if you haven’t heard about it, a married with three children, mid-forties mom attempted to kill herself and her 14 year old autistic daughter last week) but since I can’t shake my feelings about it, I have to write it out of me.

At first I really couldn’t sort out my own thoughts while being barraged with judgements and opinions on the situation... a system failure, a monster mother who should rot in prison, a child with disabilities who is perfect, a special ed teacher who "wrecked the plan", a child with acute autism who was violent and horrible to live with, a mother who was always fighting for her daughter.

Very few people have walked in Kelli Stapleton’s shoes (yet most people insist they don’t need to in order to judge her) but the majority of those who are walking in her shoes do not decide to kill themselves and their child. I think we can all agree that in her shoes or out of them, Kelli made the wrong choice, but I wonder... why did she come to believe it was the best choice?

What makes someone in Kelli’s situation turn to death as the solution? Death for her beloved child and death for herself.

My first thought would be the lack of a psychological and emotional support system. Yeah, she was a blogger, but who did she have in her inner circle that she could talk to about her deepest, scariest thoughts? Without someone to talk to, a suffering mother has only her own heartbreaking narrative in her head. People say she should have reached out for "help" but the truth is that is not possible. Had Kelli told anyone that she was thinking about killing herself and Issy, she would have been reported and admitted. She would have been judged and she might have lost all her children. Surely in her mind, that would have only made the situation worse. But that is what she needed most, someone to talk to about how bad she was feeling without the fear of her honesty being used against her.

My next thought was corrosion. Two constant forces ate away at Kelli’s ability to maintain a healthy view of the situation. Day after day, week after week... for about 12 years she worked with and against the system to try to help her child. Navigating the system is a roller coaster ride and as the main project manager, Kelli clearly was suffering from battle fatigue... in fact those are her own words. People have pointed out that she had finally gotten what the family needed for Issy... a personal care aide and six months of in-patient therapy but those things weren’t a cure-all for this family and sadly they were interventions that came too late. While Kelli was likely feeling a high from securing those wins, having her daughter rejected from school and being told she should home school her was certainly a burst to her hopes that life was going to get easier.

The second force was Issy herself. Kelli and her younger daughter were the main targets of Issy’s aggression. I’d like to say that I cannot imagine a child that difficult, but I kinda can. I have a littler, adorable version of Issy. My daughter is still manageable size-wise but she is well on her way to tearing up our family. For example, when Kimani is angry she seeks out Autumn so that she can pull her hair. When she is frustrated, she screams continuously until everyone around her is shaken up. What will it be like, I wonder, when I cannot just scoop her up and put her in a safe quiet place to chill her out? Will she still target Autumn when they are teenagers? Will she rip her hair out, bite her, kick her, punch her, throw her to the ground? What I don’t know is how it must feel to be attacked by a teenager every single day. Kelli said that Issy was a member of the "hard to love club" and I can see that. I can understand how over time having such a dysfunctional parent/child or sibling/sibling relationship could erode one’s ability to cope.

How could those forces have been ameliorated to avoid this trainwreck? For starters there should have been a whole-family behavior therapy plan with supports made available to this family back when it was first clear that their child was extremely aggressive and capable of great violence. There also should be a system coordinator available to a family that needs services of any sort, but particularly when the needs are this high. Long ago Kelli needed someone who was an expert at service coordination to help her through the paperwork and to show her what kinds of supports are out there. Don’t tell me she had that because I will tell you that’s bullshit. We have the Medicaid waiver for Kimani and a wonderful Medicaid service coordinator but I am still the one who has to do the majority of the workload finding what is available and running around/completing paperwork to get on lists to make it happen. And as for in-home behavior management help? Not all states have it, and even where they do the lists are so long that getting it is almost impossible. I know this because we are still waiting.

Am I blaming the victim here? No, no. Issy did not deserve to be hurt as a response to her disability. I am simply trying to understand how a caregiver’s perception of what is right can get skewed. Who knows what went on between mother and daughter in the couple of days between Issy’s discharge from the treatment center and Kelli’s attempted murder/suicide. But what we do know is that a horrible idea visited Kelli, probably not for the first time, and she bought into it.

Am I saying that what I wrote here is how the breakdown happened for Kelli? Again, no. I don’t know her. I am just working out in my head how a good mom to a child with severe aggression issues falls down through the years and loses her sanity concerning what is right for her and her loved ones.

So what am I saying then? That I get it. I am walking in shoes very much like the ones Kelli had on nine years ago. I can see how any person who loves someone like Issy or Kimani could over time deteriorate without good supports. I can see how someone could develop a very altered view of what is right, what is best. I can see how monsters are made. I wish that Kelli could have seen it too.

The Hypocrisy of Inclusion?

I don’t think I have come across one parent of a child with Down syndrome that doesn’t wish for and fight for this:



Why? Why do you want your child side by side with typical peers? You can say you want it because it is your child’s right but I think if you search your heart you will find more reasons than that.

We say we want our children to have peer models. I hear it all the time when IEP season rolls around. We hope our children will learn from their peers, be encouraged by their peers, and make friends with their peers.

But, when science tells us that one day our kids might be able to be physiologically more like their typical peers, many of us insist we would never want to change our child. We love them the way they are and it is the world that needs to change to accommodate their differences.

And while I would agree that it is important that the world see people with disabilities as equally valuable human beings, I cannot buy into the idea that if I really love and accept my kids, I wouldn’t want therapies that might improve their overall health including their memory or processing speeds.

Why would I fight to have my kids spend their days playing and learning alongside typical children and then refuse to let them go that extra step of functioning like them? I am not looking for a cure for Down syndrome for my girls, but I would not deny them any proven, safe drug therapy that will level the playing field for them.

Agree? Disagree? Go ahead, have at it in the comments.

10 Reasons You Wish You Were A Special Needs Mom

The truth is there are advantages to having non-neuro-typical kids. Here are ten reasons why you should be envious of me.



1. I have been saved from life as a shallow Burb mom. I was well on my way there with a husband, a house, a great job, two perfect sons, and a well-used gym membership. Kimani exhumed my deepest self.

2. My parenting is beyond reproach. No one dares to question what I feed my kids, how I discipline them, or any other aspect of how I am raising them.

3. I have x-ray vision. I can see disabled people. In fact, I even had a conversation the other day with a young man in a wheelchair who has CP.

4. I am a badass soldier in an army of fellow parents and advocates. At any time I can call on them for expertise and support. Our sheer numbers are both inspiring and intimidating.

5. Funny stuff happens all the time at my house. Just this morning little Autumn was helping me do dishes by moving things from the waiting side of the sink to the washing side. She carefully handed over silverware, cups, straws... until she got to the pink rubber spatula. That she promptly stuck in her mouth and slurped on.

6. There is a special place in Heaven for me. No matter my beliefs or my constant sins, I get to go to straight to Heaven when I die.

7. I am capable beyond everyday social and cultural expectations. Fate challenged me and I rose up to it. I found that the embers of love and pride are stoked by what is.

8. I can brag unabated about my kids, any of them, and no one will fault me for it.

9. We can do Disney, Universal, Busch Gardens, et al, with no lines, no waiting! And, if I wanted to, I could rent out Masha with me as her nanny and make a killing riding amusement park attractions all day.

10. There is something terribly satisfying about living a life of difference. I try not to let it go to my head but I can’t help feeling like I have more than you. I have a piece of the mystery you cannot even imagine correctly.

Hooray! It’s Juicy Juicy Day.

Forget celebrating math because it's Pi day, today is also Juicy Juicy Day. If you are not up on your holidays, and you want to see what every guy would like to get on JJ Day, check this out.

Sadly, my husband will not be getting that. It is just too dang cold to be outside grilling steak, and I have been having a not-so-secret affair with the dentist (three visits in two weeks) so he will be getting buffalo blue chicken dip with Tostito Scoops and the hand for dessert.

Since I am already on the subject of sex, let me ask you... is anybody who is married with kids getting enough?

I know we aren’t. I try really hard to remember when we were and sure enough there are no kids anywhere around those memories. Ever since the oldest grew up enough to notice, um, stuff, we had to start being careful. No more craziness on the couch, the kitchen table, the lawn...

And then one day I realized that we are never alone. And somehow our kids just know when something might be up. Doesn’t matter if we try to hide in our room and lock the door... they will bang on it. They know. It must be some strange survival instinct that protects them from acquiring more siblings... I swear it even wakes them up at night.

In the old days, a moment of flirtation might lead to having to pull off on a side road, but now the only reasons we stop are to let someone out to pee, or to change a diaper. There is just no spontaneity anymore. Not even late at night when I am sure, really sure they are all asleep because by then, I am too.

Recently I went to visit my gyno who I have not bothered with since Kimani was born, and I whined to her that I need something, a magic pill, to fix this. Blah, blah blah... no fix, totally normal... WHAT?! Not what I (and surely not what my husband) wanted to hear. She suggested that maybe I should set the alarm for 5 a.m. and slip in some early action. I can barely drag my butt out of bed at 6:30 a.m. to get five kids ready for school... You think I am getting up at 5 for sex?

If not for the seven (mostly) childless weeks we spent in Ukraine two years ago, I would think maybe that wild girl I used to know (who once did it on a barstool in a packed club, remember that one, honey?) was dead. But, there in Ukraine I learned there is hope. It would seem that when there are no children around, and endless hours of alone time... we are still us, and still hot, and still up for it. (And see, my kids were right... when mommy and daddy were left alone for too long, two more siblings arrived.)



Ok, so that said, tell me... how are you going to hide from your kids today in order to celebrate Juicy Juicy Day?

You Made Your Bed

A blogging mom I know who produced an abundance of children wrote a post the other day about how hard motherhood can be, in fact she said it feels like a thankless job. She was truly venting, showing an honest and vulnerable parenting moment, and for the most part she got a ton of comments from women, including me, who were all very much like, "Yeah, I hear you."

But she also got the comment about how she basically is doing motherhood wrong and if she could only learn to do it right, she would find that her now well-behaved children make her feel like motherhood is a "thankful" job, although really, that is not the opposite of thankless in this context, but hey... when you are preaching there is no need to check your semantics.

Anyway, this blogger really puts herself out there and over the years I have noticed that she gets a lot of "You made your bed now lie in it, and don’t bitch about it" crap. And I have been thinking about that because I made a bed too, and I would love to share the reality, the struggles of living with all my choices but I really don’t want to listen to all that self-righteous baloney from readers in glass houses.

Because all of us live in glass houses. I don’t care who you are or how much you Fakebook, there are truths in your life that are just as tough as the ones in mine, or Lisa’s. And furthermore, many people who "make their bed" give up and get out of it... for example, half of all marriages end in divorce.

Life is filled with choices that have both positive and negative consequences. So why is it only ok to talk about the positive ones?

There is a loss of integrity in our own lives when we are unwilling to let people talk about the difficulties that came with their choices, when we condemn and attempt to silence them with our judgements.

Not Jealous of You

This morning, while all five children—home from school on winter break—frolicked around and I tried to clear off a spot on the far side of my kitchen counter where I might fold laundry, Kimani jumped from the kitchen table to the counter and, in a split second, threw my bread machine onto the floor... smashing it.

I was so mad. I chastised her and promptly plopped her in her crib for a time out. And then I proceeded to attempt self-pity and tried to think of someone I could be jealous of... someone whose child does not daily earn the title of "The Master of Disaster."

No more fresh bread, damn it.

And the very first thing that popped into my mind was Kevin Carter’s Pulitzer prize-winning photo...



No, I cannot be jealous of that child’s mother.

But that didn’t stop me from wanting to feel like shit so I put the starving children of this world out of my mind and tried again. And images from Kimani’s school came crashing down on me... beautiful little girls just like her who cannot climb on tables and counters, who cannot walk into their mother’s arms...



"Ok," I said to myself, "it was just a bread machine" (this time). Despite the first tingles of guilt, I still whined to myself, "but couldn’t it be easier?"

Surely she could be like... surely I could be jealous of... think think think

I can’t show you pictures of what I saw then... a procession of little faces, Kimani's friends—some forever infants, some toddlers, some four year olds like her—all of whom break bread in Heaven now... each one I remember so clearly, and their mamas... each one so undeserving of the loss they suffered.

What the hell is a broken bread machine compared to that?