Sunday, March 2, 2014

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

Thursday, February 20, 2014

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. tonguingOne 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.)

Tuesday, February 18, 2014

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.

Wednesday, February 12, 2014

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.

Wednesday, February 5, 2014


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.

Friday, January 31, 2014

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.

Monday, January 27, 2014

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.

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.

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.


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.

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.