Tuesday, December 18, 2012

Inside Kimani

Always I wonder what she sees, what she knows. Always I wonder who she is on the inside.

If I could paint her brain it would look like this...

And if I could paint her heart, it would look like this...

And if I could paint her soul, it would look like this...

And if I could paint a little Kimani inside herself, it would look like this...

But I did not paint those pictures. It was Kimani who painted herself from the inside out.

Monday, December 17, 2012

Healthy as a Horse (with Down Syndrome)

Autumn lost her balance and fell backwards at school on Friday. It happened in the Motor Room (the gym) and “she hit nothing on the way down and landed on nothing but the padded floor.” I showed up for the Hanukkah Shabbat party about two minutes after it happened and she was still being held and comforted by a teacher. When they handed her to me I noticed she was bleeding from the back of her head. (This part of the story deserves a post of its own but probably isn’t going to get one.)

(a happier moment at school)

Fast-forward to Saturday... The boo-boo on Autumn’s head was still bothering her and whenever we tried to get a good look at it she would do the “STOP PULLING OUT MY FINGERNAILS” cry/scream. So I called the Ped, whose on-call service told me to take her to urgent care.

In the intake room I was asked to fill out the usual paperwork. Under the Surgical History heading I wrote AV Canal repair, and under Medical History I put none, because Autumn has never been sick or hospitalized for anything. Twenty minutes later, we were ushered into an examination room. (Which, by the way, Autumn refused to walk into. She backed herself up against the hallway wall and started crying, “No, no, no.” Smart chica.)

The nurse asked for the medical sheet and perused it quickly. She gave me a smileless look and said, “We need to know her medical history from the day she was born.” My brain fired off some smart aleck response but my mouth said, “She was adopted at 10 months old and has never been sick, except for having some reflux as a baby.”

My response produced an upgraded “I think you’re lying” smileless look, and the nurse questioned me, “No bronchial issues? No RSV? No heart problems?” I jumped in with, “She had an AV Canal defect repair and her cardiologist says she is fine now.” The inquisition ended there, but picked up again when the doctor came in. He pushed just as hard for some nugget of medical history or past illness.

It wasn’t until we were long gone from there that I realized what had happened. I had not listed Down syndrome as part of her medical history. It had not even occurred to me to list Ds as part of her medical history. And why would it? Down syndrome has never made Autumn sick or caused her to be hospitalized. But that urgent care team must have thought I was leaving out the biggest medical history treasure of all.


And just because I know you like to know these things... It was a puncture. It should have had a stitch. It is still gucky and we are treating it with topical antibiotics. That’s right, she fell on nothing and it punctured the back of her head.

Wednesday, December 5, 2012

Grateful for a Plateful

I admit that I often find it hard to be thankful when it comes to Kimani. Whenever I try, I find myself comparing her situation to what might have been worse. As in, I am thankful she didn’t die like so many of her NICU/PICU warrior friends did. I am thankful she can walk and climb because I know some babies that suffer brain damage can’t. I am thankful she can hear, and for the most part see, because meningitis tends to destroy those senses.

It makes me wonder about the feeling of gratefulness, and how it comes about. It almost seems to me that I have some imaginary baseline for everything in life, and if something rises above it, I am easily thankful. But Kimani is far from any mark I may have etched in my subconscious and finding things to be thankful for feels more like relief than a bona fide moment of gratitude.

Without this genuine gratefulness, am I living a life of poverty regarding her? I keep searching for something in her that belongs to her from before, a piece of who she was supposed to be, and I can’t find it. I swear I have gotten a glimpse of it but I cannot hold it long enough to decide if it is in fact her... the real her, or if it is just wishful extrapolation.

“It is what it is. She is who she is,” You say. And I say that too most of the time. But I promise you that it really isn’t that simple. There is a loss so ever-present in her that you cannot just accept it and be peaceful. It is a loss that cries out daily for recognition. It is a loss so powerful that it wills you into its tribulation, and you are unable to walk away without a secret wish that it would give her back.

I started thinking about this whole thankful business last month when my Facebook feed was flooded with statuses of what my friends are thankful for. I wanted to be thankful too and I was mad at myself that I could not come up with anything to post about. Then, just before Thanksgiving, a little craft project came home in Kimani’s backpack. It was a paper plate with pictures of food glued to it and it said, “Kimani’s Thanksgiving Plate.” I wondered if Kimani chose the foods or if the teacher did. I wrote a note asking about it and her teacher said that she chose the items from magazine cut outs that were placed in front of her. Kimani loves all the foods she put on her plate... pretzels, strawberries, pasta, peanut butter and jelly sandwiches, and pizza.


Just looking at that plate covered with two of everything she loves knowing that she chose those foods herself made me so happy, so very very happy that I finally felt it... gratitude. Truly, like Pooh Bear, I was grateful for a plateful.

Wednesday, November 21, 2012

No Halos Here

I read an article by David Perry the other day that challenged the idea that it is ok to label people with Down syndrome as angels. It happens a lot. I am guessing it is because people are trying to be nice and don’t really know what to say that will come across appropriately positive, so they play it safe with, “Children with Down syndrome are a special blessing from God. They are like angels here on earth.”

Perry’s response to that was,
“But while good intentions count for a lot, “angel” makes me no happier than “retard.” ... Symbols, labels and representations—in media, literature and our daily conversations—shape reality. The words “retard” and “angel” represent images that dehumanize and disempower. Both words connote two-dimensional, simple or limited people. Neither angels nor retards can live in the world with the rest of us, except as pets, charity cases or abstract sources of inspiration.”
The discomfort I feel when people refer to my child as something otherworldly was validated when I read it. Kimani is not an angel. She is just a girl... a girl with an extra chromosome who suffered brain damage as an infant. Physiologically she has too much, and too little. I admit that there may have been a time early on that I hoped she was an angel. The path she has been relegated to would be less painful (for me) if I knew that she was in fact a higher being submitting to some Godly purpose here on Earth. But, alas, she’s just a girl.

If she were an angel, she would not have gotten herself kicked out of the church nursery 7 minutes after I dropped her off there for the very first time. Yep, we have not gone to church as a family in a long long time but last Sunday we decided to try a church we have been wanting to visit. Kimani terrorized the nursery workers and children. In a flash she swiped everything off the little table and tried to climb up on it. She took snacks right out of the hands of her peers. She stomped back and forth the length of the room, thrashing and trashing in her usual Godzilla style. The poor shell-shocked nursery worker handed her to me over the gate and said, “I’m sorry, she needs a one-on-one.”

A very cool feature of this church is that the later of their two services is in a big room that has a children’s play area in the back. I took her over to the toys and let her play on one of the little tables while I listened to the message. My husband slipped out of his seat and joined us. This lasted about 5 nerve-wracking minutes until she spit up some milk. I left to get a paper towel to wipe her chin with, and she escaped her father climbing down from the table and up onto another one... that had a bucket filled with Legos on it. In a split-second she threw the bucket and all those tiny Legos made the loudest noise ever. That was it... the non-angel went to sit in the van with her daddy.

There is still a chance though that she has a Guardian Angel who watches out for her. Take a look at this clip of our daily life, and you decide.

Friday, November 16, 2012

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?

Tuesday, November 13, 2012

Open Season

My childhood was filled with killing. There was no real season for it. The guns stayed in the truck window hanging on the rack all year long. Depending on the time of year, the dead deer were either strung up proudly in a tree at the end of our driveway, or hung secretly down in the dirt cellar. We butchered them on the kitchen table. Bones sawed and cracked through rang in my ears. The blood got on everything, and it smelled...sweet and heavy on the edge of decay.

And it wasn’t just deer. There were bloody headless chickens who ran even after they were doomed. There were turkeys soaked in pails of stinking brine whose feathers needed to be plucked out. Pluck, pluck, pluck... the perfect word for how it sounds and feels to pull a feather from a soaking wet bird carcass. There was the rabbit I saw getting skinned. My young eyes were fascinated by how his coat peeled from his body, leaving a thin layer of film to hold in his red, purple, and grey guts. “Looks like a peanut butter and jelly sandwich,” My grown step brother said staring down at his catch. The next time I opened my lunch to find the white bread faintly seeping up with grape jelly trails, I knew he was right.

And it wasn’t just things we ate. There were troublesome dogs, unwanted litters of kittens, and foxes who did not belong in our coop. There were floating bull fish after the quarter stick went ka-boom in the pond. There were unrecognizable piles of skin and bones littered throughout our woods. The deer skulls were obvious... the others I wondered about.

girlsAnd it wasn’t just animals. There were two little girls who came to believe Him when he said he would tie cement blocks around their necks and throw them in the pond. Those girls grew up and got away. But I know if you go back and look into that dark and murky water you will see reflections of them lying there at the bottom.

Friday, October 26, 2012

What to Expect - Blog Hop Week 4

Before Kimani was born, I had never even wondered about what people with Down syndrome could or couldn’t do. I just assumed (my bad) that people with Ds were like toddlers that grow bigger but never grow up. My guess is that if you do not have a person with Down syndrome in your life, you might also think that way, or perhaps have not really thought about it at all.

In the spirit of awareness, I am here to tell you that I had it all wrong. And because I had it all wrong my expectations have been shattered.


Everybody knows that people with Down syndrome are delayed, but did you know that delayed does not mean dumb? There is one main thing that hampers their cognitive development... a weakness in auditory processing and storing of information. I won’t bore you with the details but I will tell you that, on the other hand, people with ds have an amazing ability to remember what they see, and when learning concepts are coupled with visual prompts, the results are good. Sometimes even better than with typical people. For example, Masha knows who every piece of clothing ever worn in our house belongs to. Try quizzing my husband or my sons on that topic and you will see what a “memory game” butt-kicking looks like. Don’t ever confuse delayed with incapable. Expect that people with Ds can do it, whatever it is.

There is a stereotype about people with Down syndrome being stubborn and physically unmotivated. Rather than accepting this stubborn trait as borne from obstinacy, look closely and note that it is really tenacity. People with Ds are highly motivated and the key is to find what drives each individual and promote that in a positive way. Masha does not have a lazy bone in her body and she is totally motivated by being helpful. Expect people with Ds to do a good job, to try hard, and to prevail.


Some people believe that individuals with Down syndrome don’t understand what is being said to them, or around them. Wrong again. People with Down syndrome are like social savants. They may not understand all the nuances of every word they hear, but they make up for it by reading expressions, tone, and body language better than you and I. They are listening and they know what you mean. Expect your words will do as you intend them... be it to interest, encourage, or to harm.

There is a misconception that people with Down syndrome are unhealthy and suffering. It is true that a good percentage of babies with Down syndrome are born with some sort of correctable medical defect such as a hole in the heart or an intestinal problem but once corrected these kids are good as new. Two of my three girls with Ds have had heart surgery. All of my girls are healthy and thriving. Expect to catch the flu no more or less often from a person with Ds than any other person.


What else can you expect from a person with Down syndrome? Tolerance, empathy, forgiveness, uninhibited dancing, laughter, and jokes, vanity, pride, courage, and competence. If you invest some time in a person with Down syndrome you can expect to be surprised.

Blog Hop #4 - 10/26-10/28; links close on 10/28 at midnight

Friday, October 19, 2012

What Is Normal? - Blog Hop Week 3

Normal, I suppose, means to conform to preset cultural expectations. But who is capable of this in all areas of their existence and if you strike out in any area do you become abnormal? Does it take a certain amount of misses to get that label?

Here is an interesting view of our society... a few facts about we, the people, who find ourselves creating the ideology of a normal life...

One in every 31 American adults, or 7.3 million Americans, are in prison, on parole or probation.

52 people in the US will die today, and everyday, from drug induced causes.

Nine of every 100 high school students has tried to commit suicide.

Somewhere between 1/4 and 1/2 of married men have cheated on their wives. About a 1/3 of wives return the favor.

735 children in the US will be physically or sexually abused today, and tomorrow, and the next day, and every following day.

One in 20 Americans have depression.

I could go on and on with this list but you get the idea. Our prescribed expectations of normal are just fantasies and culturally agreed upon standards. Because really, normal is about quantity not absolutes. The more things are a certain way, the more normalized the thing becomes. The net of normal widens with every incidence of something.

Normal people experience both joys and sorrows. Normal people make mistakes. Normal people get cancer, diabetes, and heart disease. Normal people have low, average, and high IQs. Normal people are ugly and beautiful. Some normal people are homosexual. Some normal people have red hair. Some normal people have autism. Some normal people are gifted. Some normal people have Down syndrome. Normal people are all different.

1 in about 700 babies born in the United States has an extra 21st chromosome. About half of them come as a surprise to their parents. For every one that was known about and given life, approximately 3 others are killed in the womb (though that trend is beginning to shift in a good way). This means that the creation rate of babies with Down syndrome is really about 3 in 700, or 1 in 234 people. As common as redheads and more common than Ferrari drivers, people with Down syndrome are actually quite normal after all.

Blog Hop #3 - 10/19 - 10/21; links close on 10/21, midnight

Friday, October 12, 2012

The Orchid Child - Week 2 Blog Hop

"The smallest flower is a thought, a life answering to some feature of the Great Whole, of whom they have a persistent intuition." —Honore De Balzac

Unlike our wild boy weeds
who shall grow strong
and burst into golden buds
with or without,

You, beautiful child,
are the exotic orchid
whose delicate blossoms
must be coaxed into bloom
by dappled sunlight.

You, exquisite child,
rooted in enriched soil,
watered with joyful kisses,
pruned by love’s touch,
will flower enchantingly.

You, precious child,
are the sweet fragrance
that delights our senses
and pollinates adoration
in this family’s garden.

(Orchid photo by Greg Allikas, used with permission)

Blog Hop #2 - 10/12-10/14; links close on 10/14 at midnight

Friday, October 5, 2012

Are You Aware?

October is National Down Syndrome Awareness Month and so I ask you, what does it mean to be aware of Down syndrome?

Here is my list of basics you should know about Down syndrome...

1. It is a random genetic condition that usually begins at the split second of conception. It means the person has an extra copy of the 21st chromosome, and that in total they have 47 chromosomes rather than 46.

2. My children with Ds are very much like my children (and yours) without it. They develop along the same path as other people. They do all the same things as other children. They simply learn more slowly because they process and store things a little bit differently than you or me.

3. People with Down syndrome are funny, helpful, empathetic, and kind. They make great friends or caretakers. They are quite excellent with routines, and will do a job well once they have been taught what is expected.

4. People with Down syndrome have feelings, desires, and tantrums just like everybody else does.

5. They do not deserve to be the basis of the demeaning slur “retard” used whenever someone is at a loss for a synonym for stupid.

6. In many countries children with Down syndrome are abandoned to orphanages and mental institutions. They are often available for adoption, and there are many families willing to love and raise them... if only they had the funds to go get them.

7. People with Ds grow up. They become adults who want to work, get married, and be a valuable part of their community.

8. People with Down syndrome are not Down syndrome. They have it. You can have it and not BE it. They are not Down’s kids, Downsies, or Down syndrome people.

9. Most people with Down syndrome are only mildly cognitively delayed. When you meet a child like my Kimani, you should know right away that something else is going on. In her case, brain damage from meningitis. In other cases it is often delays caused by seizure damage or a dual diagnosis of Ds and autism.

10. Many people with Down syndrome have the most beautiful eyes you have ever seen.








I believe that the function of awareness is a call to action. When you become truly aware of what I told you above, you will inevitably have to make some changes.

Maybe you will be moved to donate to adoptions, or even adopt a person with Down syndrome.

Maybe you will stop using the r-word. Maybe you will stick up for people with Ds by calling out those that still do use the r-word.

Maybe you will make an effort to help your child befriend a child with Down syndrome.

Maybe you will ask your local school what they are doing to include kids with Down syndrome in regular education classes.

Maybe you will go out of your way to say “Hi” and chat with an adult that has Down syndrome who is working in your community.

Maybe you will ask your government to fully fund the Individuals with Disabilities Education Act and the S. 1810 Prenatally and Postnatally Diagnosed Conditions Awareness Act.

Maybe you will present me with the Super Saint Mother of the Year award. Just kidding, I am only checking to see if you made it this far.

Hop on Blog Hop #1 - 10/05-10/07; the ability to add links closes on 10/07 at midnight. If you have a post that you wrote about Down syndrome this week please add it to Mr. Linky below. I look forward to reading it.

Thursday, October 4, 2012

The War on Big Bird

Last night Romney boldly said that he would stop funding PBS. Today the Internet is all a flutter about possibly losing Big Bird. I was a little surprised at how vehemently people have responded to the potential defunding.


If we have to borrow money to fund PBS, then I agree let’s cut it loose... at least until we get a balanced budget and the deficit under control. I see it the same way I view the space shuttle program that Obama shut down. When times are tight, you have to cut costs.

(Yes, I know it is only a miniscule amount of the budget... many many programs are. Yes I know there are other things that should be cut first, and I assume Romney knows that and will look at every program objectively.)

The whole current annual budget of PBS is $422 million. They have sponsors. They sell ads. They have donors. And Sesame Street in particular is known for its extensive merchandising. Licensees include a variety of companies which manufacture books, magazines, video/audio media, and toys using the characters and themes of Sesame Street.

Sesame Workshop, the licensor of these characters, is a non-profit organization. A percentage of the money from any Sesame Workshop product goes to help fund Sesame Street. Along with government funding the Workshop receives funding from a variety of sources, including charitable foundations, corporations, program sales, and product licensing.

I honestly am not convinced Big Bird needs tax dollars to survive. With all the books, toys, dvds, Sesame Street Live shows, Sesame Place, Sesame shows at other theme parks... I kinda think Big Bird is a big money maker. That dang bird is probably in the 1%. (Here is where half my readers Google it and come back to slam me :-)

But even if Big Bird did need government funding to survive... there are so many underfunded programs that frankly mean as much or more than Sesame Street to some kids, and at some point with a yearly trillion dollar deficit, we have to choose to cut somewhere... at least until we get back on our feet.


What do you think? Will Big Bird rock the vote? Is he more important than say the funding of IDEA?

Wednesday, October 3, 2012

C'mon Ann

Liberals do it. Comedians do it. Actors do it. Conservatives do it. Seems like there is no end to the public figures who don’t realize it isn’t ok to make jokes or attack your foes by calling them “retarded”.

This time around it was political pundit Ann Coulter, who regularly appears on FOX news shows, that tweeted, "Been busy, but is Obama STILL talking about that video? I had no idea how crucial the retarded vote is in this election."


It was retweeted a little over 300 times... which really isn’t a lot on twitter for someone with close to 200,000 followers. Maybe that is because most people by now know better than to demean, marginalize, and crap on an entire group of people just to insult Obama voters.

Anyway, the tweet pissed me off... but the lack of reaction from Conservatives who give her a platform makes me furious. O’Reilly and Hannity are constantly complaining that the Left makes jokes about Sarah Palin’s son Trig who has Down syndrome. They are outraged on her behalf. They hammer home that the Left is a bunch of unapologetic hypocrites.

And Sean Hannity, oh my God, on his radio show and t.v. show he repeats daily —as indignantly as possible, “They (the Left) say we want kids with autism and Down syndrome to fend for themselves.” Well Sean, it is put up or shut up time. My three girls with Down syndrome cannot defend themselves against Ann Coulter’s use of their condition as an insult to her political enemies... are you gonna leave them to fend for themselves or are you gonna step up and call her out on this issue?

Ann has been made aware that her tweet was hurtful and offensive, and counter-productive to the advancement of people with disabilities. She has not deleted the tweet, nor tweeted an apology. Will those who pay her and give her a daily platform stand up for what’s right? Without reminders from us, it is doubtful.

Please email Sean Hannity and Bill O’Reilly (oreilly@foxnews.com) and tell them to “put up or shut up” to either defend people with Down syndrome or stop pretending to care about them for political purposes. And please take a minute to tweet @anncoulter to remind her that the r-word is offensive and an apology goes a long way.

Monday, October 1, 2012

Finally She Opens the Gifts

We finally had the big birthday bash to celebrate our three summer birthdays... Kimani’s in June, the Gecko’s in August, and Jade’s in September. I wanted to do it over the summer when it would be hot and sunny but for every weekend I planned it, there was something else... some reason why it wouldn’t work then.

birthday-cakeThis past Saturday we had a BBQ, Bouncy House, lots of cake, lots of kids, a pinata, lots of friends... lots of excitement. Too much cake and excitement for Kimani. Just before it was time to open presents she signaled that she had to go potty. My husband took her inside, and she did not come back.

She needed a break he explained to me. She needed a nap. She missed opening her presents, and those who thoughtfully brought them to her missed seeing her open them. I felt really bad about this, so we waited until she was rested and most of the other children were asleep, and we set her up on the couch and let her have at it.

She, for the first time ever, paid attention the whole time. She enjoyed herself. She opened most of the packages with little help. She held and explored each gift. And she was full of smiles the whole time. I wanted her friends could see how much their gifts meant to her...











Friday, September 28, 2012

Oh You Big Bad Ass

Did you know there are disabled child hunters (DCHs) out there... searching, trolling, lurking... putting a great deal of effort into finding children with Down syndrome just so that they can publicly display their scintillating brilliance with comments like,

“Hey you mothers of Down syndrome kids, you should have swallowed, bitches!”

Oh my, thanks for the heads up, you absolute genius you. Did you learn that from your daddy? Let me guess, if I click on your profile I will see that you are a big bad ass in a band named something like, “We Eat Puppy Shit “complete with a five minute Photoshop logo of black and red splattered fonts and graphics...


And when you get together with your like-minded rockstar friends to drink beer, smoke some dope, and jam out (hopefully with a few overripe teenage hangers-on to watch), do you share your wit? “Hey dudes, guess what I did today? Ha, I fucking left some bitch ass message on a Facebook group board all about retards. I told ‘em they shoulda swallowed, har har har!” Does that impress your posse?

Let me tell you something you big bad dumb ass... It doesn’t hurt us the way you probably hoped it would... no no, instead it makes us all instantly wonder what went wrong with you. Your vileness is a reflection on you, not the strangers you are aiming at. I naturally assume you are relatively healthy, possibly even good-looking, maybe you even have a few ounces of talent on that bass... but you’re broken, everybody can see that. You may as well have taken out an ad in a national newspaper stating that your life sucks and that nothing will ever work out for you, because THAT IS HOW IT GOES for guys like you.

Look in the mirror dude, and repeat after me, “I am a man who hunts for disabled children so that I can make fun of them and hurt their mamas’ feelings. That makes me feel powerful. Why do I feel good when I make women and children feel bad? Because I am not cool. I am a jerk. I need help.”

When you finally realize what you are, here is the number you'll need: 1-800-273-8255.

Thursday, September 27, 2012

It's a Hop!

Guess what? October is National Down Syndrome Awareness Month. This means that we-who-love-someone-with-Ds will go out of our way to tell those of you who may not even know anyone with Ds what its all about.

This year my friend Meriah (With a Little Moxie) and I will be hosting a Ds Awareness Blog Hop (beginning Oct 5th) as a part of the T21 Writer's Alliance.

First things first: What is a Blog Hop?
A blog hop is when a bunch of bloggers share their posts at the end of our “hopper” posts by entering their url and blog name in a “linky”. Once a fellow blogger submits their link, it comes up as a part of a collected list. From the list, visitors can click and check out the writers on the list to read their posts.

I have never hosted a Blog Hop before but I am pretty excited to do it. I enjoy reading all my friends posts and having them all linked together is such a great way for we slackers to catch up with everyone.

October Down syndrome Weekend Blog Hop
The point of the October Down syndrome Weekend Blog Hop is raise awareness about life with Ds, connect the Down syndrome blogging community, and to inspire each other.

Those of you that are participating in the 31-for-21 Blogging Marathon, please select the one post you liked best that you posted in the course of the week and share that on the Hop.

For those of you that are not participating in 31-for-21, please select either a new post or a favorite past post and share that.

For Those of You that Like Prompts
Ellen Stumbo has shared optional prompts for the hops. They are:
Oct 5 – 7: A defining moment
Oct 12-14: If I knew then what I know now
Oct 19-21: Celebrating milestones
Oct 26-28: What I look forward to

Those (wonderful) prompts are entirely optional: take ‘em or leave ‘em.

Blog Hop Button

T21 Alliance Blog Hop

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Monday, September 24, 2012

Nothing to Say

It has been four years since Kimani’s heart surgery and I don’t have anything to say about it. I can still get myself worked up about it by rereading what I felt then, but today, right this minute it feels like this is the same as any other day. So I guess, for once, it is a very good thing that I have nothing to say.

She, on the other hand, has something to say... “Eat cake... eat it with both hands. You know you want to.”


Wednesday, September 19, 2012

Happy Birthday Jade

After watching the last video I made of the girls, Jade asked me to make one of him. And so in preparation for today, his birthday, I dug through thousands of pictures and contemplated multiple songs... searching for the ones that would capture his personality.

It made me a little sad to do it. I don’t know, maybe it was seeing six years go by digitally in a couple of hours. Maybe it was because I miss every minute of those yesterdays with him. What I wouldn’t give to hear him reply in his 18 month old voice, “Don’t knooow” to any given question.

Yet while I cherish his past, I am excited for his future because every day with him is, as he would put it, “awesooooome!” Jade is a funny kid, a lover, a performer, and full of roar, as you will see in his video.

Wednesday, September 12, 2012

A Fart Changes Everything

I would like to tell you that being a mom to kids with “special needs” is no big deal, not different at all than having five typical children... but then I would be lying. Not just lying to make a point (like a good politician might do) but outright plain old lying, which is what I do to myself on this particular subject most of the time.

It is different, and lots of the time it is a big deal. Take this morning for example... it was just about 7 a.m. with the bus scheduled to arrive at 7:20. Masha was eating breakfast and letting me braid her hair. Autumn was sitting next to us enjoying her sliced banana. Suddenly I smelled a terrible fart that had made a silent entrance. I knew Masha was the culprit. I asked her if she had to go poop, and she adamantly insisted, “No, babygirl toot.”

99% of the time, Masha goes on the potty. She is very good about Number Two and has only had a couple “can’t get her pants off fast enough” poopcidents, so I let it go... because if I force her to sit on the potty when she really doesn’t have to go, it is just a 10 minute crying ordeal that would likely lead to missing the bus.

At 7:16, I piled three kids into the front seat of the van and drove them down the driveway to wait for the bus. I did the face inspections, wiping away crumbs or toothpaste... and there it was again... a real silent stinker. Now we all know that there are different kinds of gas... and this kind is usually a harbinger of belly ache poo. I firmly ask, “Masha, do you have to poop?” She gets very upset, stiffening up for a fight, “No, nooooo.” Then she proceeds to blame it on her brother.

A regular mom, a typical mom, an ordinary mom would just explain to her five year old that she can go poop and then mommy can drive her to school... and then her child would admit the urge or put mommy’s mind at ease with a convincing, “I really don’t have to go.” But no so in my case. Now the stakes are higher... the bus is down at the dead end turning around... seconds away from taking them for the day, and I have to decide what to do. Do I hold her back, literally kicking and screaming, force her onto the potty and wait out her tears until she gives in and poops (if in fact she really has to)? Or do I send her to school and risk an accident there?

My stomach is churning as I give over her backpack and let her run up the bus steps. If this were Jade last year I would have been like, “Oh well, I hope it doesn’t happen but if it does, c’est la vie in Kindergarten.” But this is MASHA, and if MASHA craps her pants in class that will be a whole different story... that will be a reason to say “she is not ready for Gen Ed.” That would be a reason to say she FAILED the probationary period and has to go to the special classroom where they think pooping in your pants is par for the course.

And so as a “special needs mom”, I get to spend the day worrying about her... Wondering if she really did have to go, and if she will be able to tell them and get her pants off quick enough in a new bathroom. Yeah, for me—the SNM, a simple fart changes everything.

After school update: Masha came home in the same clothes she left in and with no note in her backpack, so I am assuming she had no potty issues today :-)

Monday, September 10, 2012

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.

Friday, September 7, 2012

As Fate Would Have It

Did I tell you about the little girl my son the Gecko bullied in summer camp? No? Well she teased him about his name, and he pretty much decked her. When I got the call that night from the girl’s mother, I was a mess... shocked, sad, totally embarrassed and horrified by his behavior.

Soooo, can you guess whose mom is Masha’s Kindergarten aide? Yes indeed, and I am really happy about it.


It took a lot for her to call me to tell me what happened, and it also took a lot for my son to write a beautiful letter of apology. The day he delivered it, I ran into the mom in the camp parking lot. We had a wonderful talk and I left the situation feeling good about what had started off as something terrible.

When I brought Masha in to school for the walkthrough, there she was waiting for us with a huge smile. She gave me a hug and told me how excited she was to be able to work with Masha. I was thrilled and quite relieved because I have been worried about who would play this role for Masha.

I admit I had a fear that they would not choose someone who was looking forward to helping and encouraging a little girl with Down syndrome whose mom fought for her to be educated alongside the “regular kids”. I wondered if the aide would be well-educated, bright, caring, and if she would have a real desire to make a difference in Masha’s life. Well no more worries, and Jade (great name don't you think?) has already admitted to me that she is quite smitten with Masha :-) Here’s to a great Kindy start!

Waiting for the bus...



Wednesday, September 5, 2012

Ready or Not, There She Goes


She has been ready to go to preschool for a while, or so she thinks. It started last Spring with her following her big sisters to the door when mommy announced, “The bus is here.” She would bang her hands against the coat closet door and whine. Then she would escape after us out the front door and totter off the step.

Over the summer, in an ingenious move, she stopped cooperating with her EI therapists. “All done,” she would repeat over and over. She pulled a few sit-ins, started throwing their toys, and made numerous attempts to slip away from whatever room they were in.

On Monday I bought her very first backpack. All pink and flowery with a cute little brown monkey on it. She wore it around the house telling me, “Bye!” She was on a mission to find her shoes, and once she got them she was determined to have Masha put them on her. Co-conspirators, they pranced around (Masha in my black boots) with their backpacks on, blowing kisses and waving to us all.

shoesonThis morning I snuck quietly into their room and slipped my sleepy girl out of her crib. Right away she caught on that this was something exciting. She plowed through a banana and a strawberry Nutrigrain bar, while mommy fixed her hair all pretty. When it came time for socks and shoes she signed and said both as her little feet came flying my direction.

Once she was all ready we passed the time playing with her backpack. “Zip” she said, opening up the front pockets. She removed her package of tissues and her bag of spare clothes, and then repacked them again. In, out, zip, unzip as the minutes passed and daddy snapped pictures.




She tried to wear the backpack but overloaded as it was with day 1 supplies, it took her down.


The bus pulled up and outside we went. She was thrilled and tried to run to it while it turned around in our driveway. I watched her get strapped into the carseat and realized that I am nervous even though this is my fifth Very First Day of School.


Anxious excitement threatened to make me cry as the van door came sliding to a close, separating us. In the last second before the tinted glass hid her, I saw a look of realization come over her that said, “I am in here with these strangers and my mommy is out there.”


And for a few minutes after the bus drove off with my little caboose inside, I stood there wondering... is she really ready?