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.

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.

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.

Too Much Equals Never Enough

Today is library day for my second-grader Jade. He brought home a Magic Treehouse book last Wednesday and was excited for me to read it to him. I tried. I really did. But somehow over the week, we never finished it and this morning I gave it back to him so that he can renew it or trade it for another. I felt like crap about it.

Then a little while later I had a revelation. I do too much for my kids. I am so busy doing too much for them that I don’t have time to do enough with them—and we all feel that failure. While I am busy folding clothes, cleaning up toys, putting away the clothes, packing snacks and homework, cooking, setting the table, clearing the table, doing the dishes, brushing teeth, bathing my beauties, searching for lost shoes, making grocery lists, etcetera... they are waiting for me and wishing for me to spend time with them. For the longest time I have felt that they are ungrateful brats for not seeing how much love goes into all of that care I provide them with. But today it occurred to me that they could be doing most of those things with me or even by themselves, thus freeing up my time so that I can give them the quality moments they yearn for.

This is not my first time around this block. I overdid it with my step-daughter TK as well... but I never noticed it because back then she was my only child and I had all the time in the world to do it all. She got bedtime stories every night, one-on-one playtime everyday and never had to lift a finger to help out until she was a teenager. I guess I always saw her as a little girl who was too young to do “my” work.

This could be because when I was a little girl, I was not allowed to help my mom around the house. That was a rule put in place to punish her and make her life as miserable as possible. At the same time, I was given jobs that your average 8 year old doesn’t have to do... like stacking cords of wood and carrying it in everyday, or helping to slaughter chickens and butcher deer, or staying hidden away in a bedroom so as not to draw the wrath of my step-beast. I never learned how to contribute to ordinary daily life and thus it never dawned on me that TK or any of my other children were and are capable of doing housework.

My kids are not going to care that they had clean clothes, packed backpacks, and dinner every night because those things are simply taken for granted. What they will remember is that mom never made time to read, Dingoes at Dinnertime. So I better get my act together and start making them do what they are capable of around the house.

I know there will be squawking and push back, and crying and whining. What I don’t know is if I have the strength to withstand all that and train them to take helping out for granted. Ha, maybe I should make a reward chart for myself where I get a sticker every time I follow through on making one of them do something helpful. When my chart is full, I can get a fancy latte and drink it up while I read a bedtime story to myself.



No, no, really... I promise to spend my time saved on them.

(Picture credit: Michele Quigley)

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.

Masochistic Me

Today I did my first school supply shop of the season.

I contemplated doing it yesterday, thought I might bring all five kids and just “see what happens” and after packing them in the van found myself at the Starbucks’ drive-thru instead. After a sip of caffeine, the self-injurious idea to go into a store with all my kids passed and we all went home.

Then last night my mom called and offered to come sit with the gang for a bit so I could get the shopping done today. Wow, thanks mom! I clipped together the three lists of items I need for Masha, Jade and the Gecko and weighed my store options. Staples? Target? Walmart? Last year I had to hit all three in order to fulfill the very specific teacher requests.

I made the call to go to Walmart because I figured if I got lucky time-wise I might be able to throw in a little grocery shopping too, big dreamer that I am. Wally’s was way more crowded than I ever remember it on a Friday morning at 11:30: except for maybe that one time I ended up there on Christmas Eve because our copy of The Grinch that Stole Christmas was missing (as if some damn grinch had stolen it from us) and Christmas Eve would have been completely ruined without a showing of the Grinch, but that is a whole other story.

The school supply lists in my hand were full of brand names... a Mead this, a Fiskars that, Ticonderoga pencils, and Crayola washable thin & thick everything else... God help your kid if you cheap out and buy that off-label stuff because then the teacher will know that you are either broke or really bad at following directions.

After about 45 minutes of digging through bins, comparing items to my lists, and doing the mental mathematics of whether three 2pks of glue sticks is cheaper than one 6pk (it is), I realized that there might be a hidden camera somewhere... that maybe this was a Survivor tryout and damn, I was not about to get kicked off before I even made it on. Surely the guy whose cart was blaring rap music complete with F-this and F-that lyrics up and down each school supply aisle was a prop, right?

Oh and did I mention that I was on a timer? My mom had to go somewhere so I had to be home by 12:30. The pressure was incredible. Toward the end, I just started throwing extra crap in my cart thinking I could dump it off on the way to the checkout if I decided they don’t really need it or it was the wrong stuff (sorry, yes, it was me who left those pocket folders on the shelf near the checkout.)

I spent $54, got home by 12:38, and made a big dent in the school supply shopping task, and I got my daily dose of You Suck at This. Who could ask for more?

The Secret to Kimani's Hair (and Speech?)

Kimani doesn’t like having her hair washed, or combed, or brushed, or petted, or styled with ponytails and the like. And her hair doesn’t like staying clean and tangle-free. So, every single morning is a fussing match. She cries. She pulls her head away from me. She pushes my hands away. She scratches me. She cries. She cries. She cries. I want to cry too.

Every so often I get really impatient and sick of it and I think, "This is it, I am cutting it off!" But I never do... because I remember all those girls in the orphanage with their short little bowl haircuts. I know that if I cut Kimani’s hair it would be more about me than her, so it stays.

This weekend I was on my own with my four youngest kids and I was worn thin (my tolerance not my waist unfortunately). I started to work on Kimani’s rat nest and she started her objections. This morning her hair was really messy because I had not taken the time to brush it out before bed the night before. The job was so daunting that I started to think about the scissors again.

Then all of the sudden an idea popped into my head. I ran to get her iPad and propped it up in front of her. Then I searched youtube for her favorite song, Kidz Bop doing Call Me Maybe.



She is enthralled with that song. After five times listening to it, she had a lovely set of ponytails and I kept my sanity (ok, having "I missed you so bad" stuck in my head all day might have made me a little crazy but it was worth it.)



Look at how happy she was even during the 6th and 7th rounds of it.







And then I realized she was singing along, or at least trying to. Here she is trying to sing, "bad".



After I put the iPad away, I noticed that Kimani was very verbal. She initiated a two word request over and over, "Want cookie." After a few cookies, I told her that we were all done with that, and instead of pitching a screaming fit, she went to get her PECs book and began looking through it. I knew she was looking for the cookie picture so I put it on the Velcro part of the book. She took it and put it on her request strip and gave it to me and said, "Want cookie."

I was really amazed. This is a big deal for her. She has never been that verbal and directed in her communication. So of course we are going to be doing a lot of experimenting with Call Me Maybe followed by mama’s homemade speech therapy.

My Latest Parenting Fail

Warning: This post has a gross factor rating of a zillion. If you have a weak stomach or are catching up on blog reading while eating your lunch, turn back now.

Let me set the situation for you. I have been alone with my four youngest children and no vehicle for three days now because my husband has the Gecko away at Boy Scout camp and the van is in the shop.

I am bored. They are bored. The sun is shining but nobody wants to do the same thing outside so we are mostly staying in. Masha and Autumn are stir crazy. They are getting into all kinds of trouble. And they keep bugging me to let them go outside to ride their bikes. So finally, I fling open the doors and let them loose.

The phone rings. My girlfriend and I start chatting, and after a minute or two I realize I don’t hear or see the girls. So I send Jade out to check on them.

Jade, running back into the house, "Mom! Mom! Reba killed something. Reba killed a chipmunk. It's dead. Mom! Come see!"

Me, still on the phone, "Are the girls near it?"

Jade, "Yes!"

Me, running out the door and screaming, “Are they TOUCHING it?!”

Jade, "YES!!!"

When Masha saw me coming, she threw ↓ ↓ ↓ what she was holding in her hand.



Me, horrified, "OH MY FREAKING GOD!"

Masha, scared now... put her hand in her mouth in that self-soothing way she always does.

Me... dropped dead from a gross-out heart attack... no really, I screamed louder, "GET YOUR HAND OUT OF YOUR MOUTH!" and I grabbed her and held her hands away from her face the whole way to the bathroom.

Meanwhile, I yelled to Jade, "Keep Autumn away from that thing."

Once Masha was clean, I went back out to get Autumn.

Jade, looking grim, "She touched it too, mom."

Me, "Oh no no no no no no" as I rushed her to the bathroom sink.

When I went out to get rid of it, I saw that not only had our cat killed that thing, but she had also eaten it... and puked it up.

Yes, my beautiful 6 and 3 year old girls were outside playing with dead, puked up animal parts. Ugh.

Change (Part 1)

Change, when it comes to people, happens every second of the day and is inevitable. And I would assert that humans are the most common and powerful agents of change there are, on themselves and on each other. Going a step further, parents are the most influential players shaping the changes occurring in children.

Whether we like it or not, we decide everything for them in the beginning. Remember breast vs. bottle? And it goes on from there. We make those choices with love and determination, a kind of thoughtfulness that looks at the present and into the future. We choose their playmates, their schools, their extra activities, where they live, what kinds of food they eat, what they are exposed to both physically and mentally; all with the hope that our choices will somehow help our children to become whatever our personal idea of a good (well-adjusted, successful, insert your own word here) grown-up is.

Now, when we talk about trying to change someone we need to break that down into smaller chunks. Like are we talking change as in having a big ole’ strawberry birthmark removed from the middle of your baby’s face? Or are we talking about not feeding the boys Froot Loops for breakfast, lunch and dinner every day because it isn’t nutritious for them? Or is it purchasing the braces the orthodontist recommended or not buying the Nerf gun because you don’t let your kids play with weapons?

Am I getting where I am trying to go? Do you see the difference between change and change, and change? Change for the sake of beauty, health, academic success, personal beliefs, or... Do you see the difference between change that is orchestrated and change that is incidental? Do you see how intertwined it all can be?

Those changes that we (and others) introduce constantly to our children create the physical and psychological structure of their body and mind, and the meaning they attach to themselves and their world—in most cases for their lifetime. We give them the world we want them to have and we teach them how to understand it. We help build their multifarious skill sets and their schema for filtering life.

We change our children, that is what we do. There is no getting around it.

And it is ok. Because if you didn’t change your children—just imagine you were magical and had that choice—you’d be a crappy parent. (Of course if you change them for the worse because you suck at being a decent human, then that too makes you a crappy parent.)

So when we talk about changing our children, maybe what we mean is that we are trying to figure out when or how it is ok to change them more, or less, or in different ways than the prescribed cultural norm, or the counter-cultural norm, or the norm you think is the norm. When you have a child who is born outside that imaginary norm, the questions surrounding change become even more complex and more confusing.

Even when you have a baby with a difference like say, Down syndrome, you still exert change on that baby every day of its life. So the question becomes not if you will change your child, but why and how you will do it.

If I Should Die

Or rather if my husband and I should die, what will happen to them?











That has been on my mind lately.

All the life insurance in the world can’t buy new parents.

Am I the only one struggling to come up with a plan in the event the worst happens?

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.

Ableism, Are We Guilty?

First off, for those who may not be familiar with the term ableism, it is a form of discrimination,

"A network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical, and therefore essential and fully human. Disability is then cast as a diminished state of being human." - Cambell

By the way, I love that term, species-typical because after all, nobody is normal.

Where is the line between providing and supporting a child with Down syndrome (or any disability) with opportunities to develop in a healthy way and driving that child toward the species-typical model via therapies, drugs, surgery, and parental pressure? Sometimes I think the line is imaginary and crossing it is simply a matter of semantics and interpretation. Other times I know for sure it is real and I am sad to see it crossed.

At the edges of our communities, we are two camps divided... those that believe most any sort of intervention in the natural development of a child is an attempt to fix perceived deficiencies and those that live to brag about their child’s latest success on the continuum of normal. Is there an agreeable in between? And if our children could see their own futures on both trajectories, and could articulate their desires and fears... what would they tell us about the importance of achievement?

I have not taken any disabilities studies classes and thus my non-scholarly opinions on this topic are developed from experience with my girls, reading and thinking through the experiences of other parents in the Ds community, and exposure to a more-than-average amount of therapists and therapeutic opportunities... which is my polite way of saying I am just thinking out loud here.

When Kimani was born I, like most parents of a child with Down syndrome, was sure she was going to be THE Down syndrome rockstar... she was a beautiful infant and extra chromosome or not, she had smart bloodlines... How great she could have been we will never know because at 4 weeks old she contracted bacterial meningitis, and although I did not know it at the time, her gonna-be-a-rockstar days were over.

When we got home from the hospital (Kimani was 4 months old) Early Intervention began and I learned a whole lot about milestones, expectations, and therapy. By nature, I am a "why?" person so everything that was introduced to my daughter as part of her therapy, I questioned. The things that made sense to me, I allowed... the things that didn’t, I declined. What I realized was that some people approach therapy as a way to push children who are different closer to the, here we go with my new favorite term, species-typical model as fast as possible. Other therapies are designed to mitigate motor weaknesses that can lead to potential difficulties and unhealthy habits later on in life.

For example, Autumn has an aversion to using her right leg and putting weight on her right foot. I could view this as "that’s Autumn, that is the way she was made and being different is ok" or I could see it as something that should be addressed and give her the therapy she requires to correct this so that when she is older she will not have potential arch pain or hip pain due to how her body naturally compensates for this. I chose the therapy. Now if someone told me that they wanted to use Theratogs on Autumn as a way to make her walk at a younger age, I would have said no because I didn’t care when she was going to finally walk on her own... but if the Theratogs will prevent potential hazards for her in the future... like falling down a lot, then heck yeah, we are going to do it.

I think that most parents of children with disabilities start out (unknowingly) as ableists but grow out of it—in degrees—as their children develop and they realize that being different is ok. The only times that being different needs to be questioned, and addressed, is when it has the potential to cause harm to the child now or in their future.

Childhood is not a race to a perfected version of being human... not for kids with different abilities and not for typical children. It is a time of innocence, joy, learning, and growing. I like it when my friends celebrate those things about their children and my children, as long as the value of the celebration is simply on the child, not on some underlying comparison chart to other children.

So as with most things, when it comes to ableism and achievement, you need to ask yourself, "Why are we doing this?" If your answer doesn’t fit the definition of ableism, then someday your child will probably be thankful that you did it.

 

Lisa from Life As I Know It is hosting a blog hop so if you have some thoughts on this topic or just want to read more, check out the links below or add your own.

Compliance and Special Needs

A while back a close friend asked me if I fear that my girls will be sexually abused because their disabilities make them easy targets. The answer of course is Yes. The statistics on this topic wholeheartedly agree, and that sickens and terrifies me.

But I told her that of all my children (and honestly I fear abuse of my typical children as well) the one I worry about the least is Kimani. While she might seem like the easiest target of all, really she would be the hardest for a predator to take advantage of. Kimani is not compliant... not physically or mentally. If you tried to get to her in that way she would fight you like a wild cat, and she would scream like one too. I know this because even I, her beloved mother, can’t get a good look at her girly parts when I need to without enlisting the help of daddy. And Kimani cannot be manipulated with promises or threats... you cannot talk her into anything.

Now ya’ll know Kimani is getting big and strong but isn’t mentally developing anywhere near the speed of her body... which means that her non-compliance and impulsive behavior is getting harder and harder for us to handle. She is always a one-on-one and often a two-on-one kid and can never be left unattended for any length of time, unless she is in something she cannot get out of, like a highchair.

I want to take her to Boston to the group of pediatric neurologists there that specialize in post-meningitis brain injury but in order to get this approved by our insurance I have to jump through hoops locally to show that no one here can help her. The local ped neuro we met with prescribed an MRI and a daily dose of Concerta. Huh, it never occurred to me to drug her but I have done extensive research on Concerta and I could see how maybe this would help to calm her and give her what she needs to control her impulses. After thinking it over, I developed a fantasy where on Concerta she would be able to focus and learn, and maybe even go to our public school in their special education K-2nd grade room. I daydreamed that on Concerta, Summer would become like Autumn.

I filled the script and we tried it out. It was a liquid, and so yeah even hidden in stuff she likes, she spit it out. Then, even more well hidden, she spit it up moments later. But some of it took hold and she was different that day. She was subdued but clingy and she cried for me whenever I left her sight. I told myself that she hadn’t had the correct dose and that maybe she was kind of sick and suffering from a general malaise due to an illness... not the Concerta. I went to the doctor and got a script for the pill form and tried again. I had to come clean with her teachers and school nurse because one of the side affects of Concerta is loss of appetite and between that and a bout of diarrhea they thought she was sick and called me in to pick her up. During the discussion about how she was acting on it at school, her teacher said something like, "Is it worth it if she is no longer herself?"

Wow, just freaking wow. No, no it isn’t worth it. Especially after reading a post that blew me away about teaching our children with special needs to be compliant. Do I really want a little girl who will do whatever she is told by whoever tells her to do it? Am I raising my girls to be vulnerable because I am training them to do as they are told, no matter their own feelings about it?

There is a ton of societal pressure on parents to make their children with special needs compliant in order for them to be included in their communities (schools, extra-curricular activities, church, etc.) In fact I would guess that non-compliance is the number one reason why most kids with SN end up in self-contained classrooms or are asked to leave certain public spaces. And I do get it, I understand that Masha needs to go with the program if she is going to make it in a Gen Ed classroom... but at the same time it is likely that she may never be able to discern which authority figures (and for her that may be any adult or older child) not to comply with... even when it hurts.

So how do you raise well-behaved special needs children who may grow up to be too naive to protect their own bodies, possessions, or mental well-being? I have some ideas but not enough.

My kids are not forced to share everything. In fact they have things that are only theirs and I make it a point to tell them not to share those things. For now it is stuff like their drinking cups (my kids are color coded so they each have their own color cup) and certain pieces of jewelry. I also never force or even overly encourage my kids to show affection to anyone, including me. Heck, I waited almost four years for a kiss from Kimani and I would wait four more if she so chose.

But the most important one of all is that sometimes I allow a standoff between us. If one of my girls draws a battle line in the sand, I do not always cross it and win the fight. Sometimes I let their will be done because they need to know that their will matters even if they don’t have the vocabulary to defend it.

But Kimani... she doesn’t know what color your cup is, whose bracelet is whose, or if you brought a tank to the battle—so unless her safety dictates otherwise—she impulsively rules her universe... and I have no inking whatsoever what to do about it. One thing I do know is that I would rather deal with Kimzilla than turn her into more of a target than she already is.

Gecko Scores

My 9 year old son Gecko plays on a premier soccer club team. He is one of the youngest and most developing kids on the U10 (boys born in ’02 & ‘03) team. He is also one of the smaller kids, though surprisingly not the smallest. But he is built for soccer. He is fast, agile, and aggressive and for the most part he holds his own.



For some reason though, he doesn’t shoot for goals. He plays forward or midfielder and he does great getting the ball and moving it, but when he gets close he just doesn’t take the shot. I chalk this up to focus (too focused on controlling the ball to plan for a strike and not focused enough on where exactly he is and what the goal opportunities look like ahead of him) and perhaps even a bit of uncoordinated motor planning (the switch from controlling it to actually shooting it).



I am not some crazed soccer mom who lives and dies for her kid to be the best, to be the star but I know that for his sake he needs to take that next step and start taking goal shots. I have been subtly mentioning it to him and when it comes up he tells me he prefers defense. And so I leave it alone hoping that by the end of this first year he develops to the point where he wants it.



Last Sunday when I did a little birthday shopping for myself at the Pandora store, he was with me. He goes there often with his dad to pick out my special occasion gifts and he enjoys looking at and picking out the beads he thinks I might like. As we were eying the lovely baubles in the glass cases, he said, "Mom, don’t you have a football? Maybe they have a soccer ball."

The sales lady was quick to tell us there is a soccer ball bead and to pull out the tray that it sits on. I smiled at Gecko, "I do have a football bead. And when you score your first goal, I will buy that beautiful soccer ball bead to celebrate it." He smiled right back at me and said, "Ok mom."

On Wednesday (the very next practice) the boys played against themselves, and lo and behold, Gecko scored not one but two goals. The minute he got home he yelled to me, "Guess what mom? We can go back to Pandora now." I was very excited for him and proud of him.

But later that night I wondered about it. When your children are really little, you know them so well. You know what each of their cries means, you know everywhere they go, everyone they see, all the things they care about... but then they begin to grow up and away from you. They have crushes you don’t know about, thoughts they don’t share, friends and enemies at school you don’t know. They have fears and desires that you are not privy to. Was it a coincidence that he scored those goals the very next time he was on the field? Or is he that motivated to please me/make me proud? Is that a good thing? Was it to show that he loves me or does it mean he feels like he needs to measure up?

Today he came home late from his game. He walked into the kitchen with a little Pandora bag in his hand and a wide grin. As he handed it to me he excitedly told me that he took a goal shot during the game but "the goalie just barely got it!"

That little silver and enamel soccer ball charm on my bracelet means a lot to me. While it won’t give up the secret of why he wanted it so bad, it reminds me that my boy is superstar to me.

Stupid Is Not the Problem

I would wager that quite a few people who read yesterday’s post were anywhere from uncomfortable to horrified that I told my six year old son Jade that his four year old sister Kimani is in fact stupid.

Before I go on, let me put it out there again that Kimani has suffered brain damage. Her having Down syndrome is secondary to that. I would give most anything I have for her to only have Down syndrome. I would never, ever say that her sisters Masha and Autumn (who also have Down syndrome) are stupid, because they are not. They have a good measure of common sense and the ability to process and store information at a functional and educable rate.

Which brings me to the classic definition of stupid: lacking in common sense, perception, or normal intelligence; having dull mental responses; slow-witted. There is no value judgement inherent in the definition of stupid... nothing to say that it is a bad thing.

But we know that being stupid is bad. We know that calling people stupid is an insult. We know that actually being stupid gets you picked on and often abused. Those problems are more about us than they are about Kimani. She is who she is and has the brain capacity that she has. It is us, those around her who will place a value on her head. I happen to think she is worth her weight in gold.

As for stupid... instead of me trying to paint some prettier words over it (intellectually impaired and cognitively delayed) which have less stigma attached to them, I simply admitted to my son what he can already see for himself. His sister lacks the ability to do many things because she lacks common sense, perception, and a functional level of intelligence. What is most important is not that he believe that she is NOT stupid but rather that he believe she is valuable and lovable despite being stupid, and I am pretty sure he gets that.

Minus the Sugarcoating

Every now and again I keep Kimani up late and I snuggle and play with her in the livingroom, and it is wonderful. For the most part she is calm and open to my affections, and she plays, she actually plays with me... in her own divergent sort of way.



Tonight I let her stay up because during her bedtime routine she kept saying "No bed" to her father, and when she manages to speak, she always gets what she wants, provided we are able to give it to her.

Jade was also up and playing with some new Melissa & Doug stacking toys—trucks and trains—in the livingroom. He wanted me to play with him too. So she and I did. Vroom, vroom, I loaded wooden cars onto a wooden trailer while he built a bulldozer. Kimani tore it apart and put some of the pieces in her mouth.

Jade got frustrated and very upset with her. He let out a short angry cry and then accused her to me, "Sometimes I think she is stupid!" I could see it in his face, in his eyes, that he was afraid of what he had said. Maybe he feared getting in trouble, or maybe he worried that he hurt her feelings... either way the words just hung there in the room, and the tears welled up in my eyes.

I didn’t know what to say to him. I hate parenting moments like that... when there is something big, something important, perhaps crucial and I have no idea what to do with it.

Even though I didn’t know what to say, words came out, "Yes, Jade. She is stupid. She cannot think like you can. Her brain was hurt when she was a baby and it made her stupid. But we don’t say it like that because that is mean. It is not her fault. She cannot help it. Can you forgive her for ruining your things?"

He said he could.

(Can the mother forgive Fate for ruining her child? She said she cannot.)

You've Got Homework

Remember way back when you were in school and the most your parents had to do was give you lunch money and sign your report cards? (Unless you got a really bad test score and then they had to sign that too.) Well, sometime between the 70’s and the 90’s someone decided that parents should sign nightly homework sheets, and that my friends was the beginning of Parent Homework.

After that came the reading sheets giving bedtime nighty-night stories a whole new purpose. Though I felt uncomfortable "reporting" the stories I read to my children each day, I went along with it.

And now, 15 years into our school/parenting adventure, we find ourselves with a 1st grader who gets homework that a six year old child cannot complete independently. Our role has changed from providing homework oversight to being active homework participants. One of us has to go through the work with him... reading full length poems, explaining complex instructions, walking him through the questions, and checking off five different parts to the homework each night.

Because Jade’s homework requires about 45 minutes of parent participation, it gets done when and if I have the time to do it... which is not necessarily when he would like to do it. So for the first few weeks we battled over it and 45 minutes went well over an hour. Some nights it didn’t get done, and at the end of the week the packet would have some blank pages.

The first time the teacher sent the packet back and asked that Jade "make up" the blanks, I wrote her a note explaining that what gets done is what gets done and I am not carrying over last week’s homework into this week’s. At our conference I explained my reasoning, and I thought we had an understanding about how homework would go.

Until the week when there was only one night it worked out that homework got done. First there was the Frankenstorm, then Halloween, and then momma left town for a few days. When I got home on Sunday night I found Jade’s homework packet in his backpack with a note saying that he was to complete it over the weekend and bring it in on Monday. At first I was annoyed with my husband for not looking in the backpacks on Friday and doing the homework with Jade over the weekend... but then I realized that the real problem is that the homework is not appropriate for a first grader to do on his own. So I wrote a little note explaining our week and said that we would not be making it up during the coming week.

When Jade came home from school on Monday furious, throwing his backpack on the ground and yelling all the way up the driveway, I knew something went very wrong at school. I asked him to talk to me about it and he finally told me that he had to miss recess to stay in and do his homework packet.

That was it for me. I was pissed. If mommy doesn’t do her homework, Jade misses recess? I wrote to his teacher and suggested a positive alternative to Jade missing out on something he loves. She sent me back excerpts from the school’s homework guidelines and suggested I use my "sticker reward" idea at home. I won’t bore you with the back and forth details, but it went on for a while with the teacher insisting that Jade’s homework will get done, if not at home then in school.

Now if the homework could be done independently by a 1st grader, I would agree with that, but it can’t. So I said either he gets homework that he can do on his own, or he does what he can on the packets and loses no positive activity time at school as a consequence of not completing the whole packet.

Queue the meeting with the teacher and principal wherein I learned that they know the work requires adult participation. I was told that the school is providing us with a bonding opportunity, and a way to invest in our child... that there is not enough time in the school day to do all they need to do, so the homework provides a chance to go beyond just practicing math, reading, and spelling. When I said that I don’t think it is appropriate for the school to be pushing into my home with bonding and investment requirements, I got the "You are the crappiest mother in our district" stare.

So I guess instead of family game night, we are going to have family homework night. Come on children, you bring your math sheets and I’ll bring the popcorn. Woot woot, isn’t this fun?

Raising Cain

I remember... when TK was just eleven years old she came home from Easter vacation at her mom’s house with her long beautiful hair dyed black. Black as black can be, and I thought to myself, “Oh no, here we go.” And though my husband cut off all her hair, what drove her did not go away. From there on out, it was a rough ride... not because she began misbehaving but because she was struggling internally: sad, angry, and no positive self image.

I thought it would be so much easier with boys, but now I see that I was wrong. Just the other day when I was searching You Tube for a song, my oldest son—nine year old Gecko, poked his head in my office and said, “Can you play ‘Feel Like a Monster’?” I had heard that song before, probably on the van radio but I couldn’t think of how he would know it. He went on to tell me that it is his song, that he feels that way.

I pulled it up and clicked the Play arrow... and after a couple seconds of an animated icky video, I stopped it. “How did you find that song?” I asked him, concerned about him searching You Tube for anything at all... and he explained that I had the wrong video... there is a video of the Pokemon Zoroark with the song. Hmmm, Pokemon... ok but not really because I do not like the idea that he identifies so strongly with the words to the song.

Now he sings it everyday. Just this morning waiting for the bus, "♪ ♫ I've lost my soul, ♪ ♫ I've lost my heart." Listen if you dare.



I wish, no stronger than that, I ache to be able to go back to when he was just a little toddler and do it over again so that somehow we don’t end up here. (Did my mom think she did it all wrong when I would blare AC/DC’s ‘Highway to Hell’ on my stereo everyday?) Isn’t nine a tad young for this kind of angst?

The boy sure is his mother’s son.