Has the Onion Gone Too Far?

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

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

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

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

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

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

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

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

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

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

Sun Shine Down - Review & Giveaway

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

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

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

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

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

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

Awareness ---> Acceptance

It is October, Down syndrome awareness month. With that should come some obligatory posts about how awesome ordinary my girls are. The idea is that if you could become truly aware of what it means to be a person with Down syndrome, you would not treat people who have it any differently than people who don’t.



I’ve never been quite sure how to make that happen, and last night—during the middle of the night while I was supposed to be in deep repose—it dawned on me: I can’t make that happen. That is because we both have a role in this process. It is my job to bring awareness to you and your job to accept people with Down syndrome as fully human, like you are. And I cannot force that.

Yesterday a woman from the Office of People with Disabilities called to share some program information with me. We talked for a bit and it came up that I actually have three daughters with Down syndrome and she said, "You are such a good person." What can I tell her about Down syndrome that would make her understand that I am no more good than any other woman who has five children at home?

A while ago I was at a Pampered Chef party and as I chatted with a stranger, I mentioned my three daughters with Down syndrome. A very serious look came upon her and she said, "Oh, I’m sorry." How do I explain Down syndrome in a way that lets her know there is nothing to be sorry about?

In early September I sat in a meeting with Masha’s Kindergarten team. Her new teacher was visibly nervous. The team asked a lot of questions about behaviors. What could I say to ease their minds?

Sometimes I feel like a walking Down syndrome commercial. Over and over I find myself saying, "They are just like my other kids except they learn more slowly." (Except for Kimani of course, who really is not like anyone else I have ever met, and in her case I am continuously explaining that "this is not what Down syndrome is like. She suffered brain insults as an infant and has neurological damage." But Down syndrome is what they can see on her, so despite my denials, it gets the blame.)

If you could see Masha and Jade together, you would believe me. While they are miles apart in their academic progress, they are evenly matched in their life skills. In fact, though she is six months younger than he, she is more helpful, gets ready for school more independently, and follows routines better. When it comes to fighting over an iPad, they are even-steven, and it is a toss up as to which one will come crying to me. She rides his bike, pulls him on the wagon, chases him down the slides. He reads stories to her, and gets insanely jealous when she gets one of his sight words right during our games of Word War (an M & M prize is at stake here folks.)



Yes, if you could spend an afternoon with my children, you would know what acceptance looks like. When my boys look at their sisters, they don’t see Down syndrome at all... they see only Masha, or Autumn, or Kimani. They see people not a syndrome, and when that happens for you, I will know that I have done my job well enough that you have been able to do yours.

Tell me, could you ever imagine yourself screaming with joy into the face of a person with Down syndrome?

Masha Wants to Ask You Something

Until she was three and a half years old, Masha was raised in a completely inclusive environment, an orphanage. Her babyhouse, a sprawling building which at one time had been the barracks for soldiers of World War II, was split into three sections of children’s quarters. Central to each was public visiting area and a non-working kitchen. There were three other children with Ds that we saw there, though not in Masha’s section, and no other children with visible special needs. All together there were about 35 children living in the house.

Masha seemed to be treated like all the other children, although we were told to never let her cry... so she may have been a wee bit spoiled. She was incredibly independent, able to dress herself including putting on her own shoes. She ate at the same table as the others from the same style of glass bowl, using the same large utensils, and drinking from the same style open cup. Outside she rocked herself on the same single swing and played on the same scooter toys.



Once we got her home to the United States we realized that Masha watched other children very closely and expected exactly the same as whatever they got. And although she has chilled out a little bit about this (in that her response to not getting exactly what another child gets has improved from an epic tantrum to a minor fit) she still wants it, whatever it is.



And she will work ten times as hard to get it. She is tenacious.



But now, she is in school. She just wrapped up her first year of general education kindergarten (which we fought very hard for). And now more than ever she wants what they have, to do what they do, but she has hit a wall.

Her speech apraxia and her learning disabilities made it very hard for her to interact with her peers the way she wanted to. She knows that some things are different for her, and she is annoyed by that, which is evident by her acting on her frustration.

Gen Ed is harder for her and on her than her self-contained pre-k was. Even with generous modifications and supports, it is still harder. After weighing all the pros and cons, we still think it is the best thing for her given the options we have to choose from. So this coming fall, Masha will begin Gen Ed Kindy again.



We are doing everything we can for her to help alleviate the apraxia. This month she begins hippotherapy. She has her own iPad that has apps for apraxia as well as everything else under the sun that she likes. She gets speech therapy 4x every school week. She is still constantly surrounded by family and peers that talk to her, and around her.

She talks all the time. She sings, tells stories, tattles, reprimands, demands, instructs, argues, praises, loves... and yet only a few of her words are intelligible.

(Masha, only home from Ukraine 2 months, with a lot to say. Her doctor at the babyhouse told us she spoke about six words in Russian, but now we know that she was just not able to be understood.)

The causes of speech apraxia are unknown, and there is no cure for it. Why people with Down syndrome are more susceptible to it is also a mystery. Almost 150 years after Down syndrome was first clinically described, we still don’t know much about what that extra chromosome is actually doing and how it affects the people who have it.

To take research from theories and mouse models to real health benefits requires our community to unite behind the need for answers. And we need a general public that cares enough about Masha and the rest of the 6 million people worldwide with Down syndrome to step up with us. Visit ONE21.org and join us in reimagining the future. If she could, Masha would invite you herself.

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.

Sweet Steps

Kimani’s life is a dance of few steps. She is angry with the choreographer, though she takes it out on me. For I am the one who fails at reading her mind. I am the one who feeds her unappetizing things, too slowly, at the wrong time of day. I am the one who puts her into or takes her out of her crib against her will. I am the one who drains the water from the tub and runs brushes through her tangles. I am the extension of herself that is uselessly out of her control.

As she gets bigger and stronger and more frustrated and impulsive, I get more desperate. I want answers. I want help. I want a fix. That’s right... I want my baby girl to be all better.

I fantasize about fetal stem cell therapy; a needle full of fresh master cells plunging into her spinal cord and releasing new life into her brain. I imagine those cells going to work, developing into whatever she needs. They replace what was eaten by the meningitis bacteria. They stand in for the ones that suffocated to death while her aorta was resectioned. Day after day she blooms into the Kimani she was born to be. I researched programs, pleaded with neurologists and insurance reps, wrote to foreign specialists, and nothing. Fetal stem cell therapy is just a dream.



The best the neurologist could do was offer us drugs, and even though I hated the idea, we tried them. First Concerta and then Adderall. Both had powerful (and negative) effects on her so we ended those trials. “One more idea.” the doctor insisted, “We can try X. It is in a whole different class of drugs.”

We started her on the Guanfacine the last week in June and within days I saw the first change. I was feeding her lunch and when I gave her her drink cup she sipped and then put in down on the tray. I tried to take it back and she grabbed it and held it on her tray. I was stunned. How it always works is that I hand her a drink, she sips, and then throws it or pushes it away. I have been working on having her keep her cup on her tray for years.

Then the other day she was standing next to me in the kitchen, holding on to my leg and she suddenly went into the bathroom. I asked her if she had to go potty and she did not scream no or try to get away. So I put her on and sure enough she immediately went poo. We celebrated with cookies and m & m’s. She was not even done with her ems-ems when she started to cry and ran back into the bathroom. I put her back on and she went again. I was giddy. Oh My God... she told me she had to go, she waited until she got on, she knows!

Yesterday though, yesterday she blew me away. I was cooking dinner and she was sitting by my feet bugging me for snacks. I accidentally knocked the phone off the counter and it hit her hand on its way down. She made an unusually big deal out of it, screaming her head off. Daddy consoled her and I retrieved the phone and put it on the charger on the other side of the counter. When she was done crying she got up and wandered over to the counter, looking up and around for something. I thought she was headed for the box of Triscuits but instead she reached up, grabbed the phone, and threw it across the room. My jaw dropped.

She got hurt. She knew what hurt her. She got mad at it. She remembered she was mad even after she cried for a while. She got even. SHE GOT EVEN. She decided to go after the phone. She was on a mission. She planned it and executed it. This is the very first time she has ever done anything that indicates a plan, a decision, an understanding of process. I am freaking crying just typing those words.

Most people with Ds do not struggle like Kimani because her difficulties are not directly linked to her extra chromosome. Yet just seeing how a drug can effect a person’s ability to tap into and control their own mind has made me wonder what therapies could potentially positively change outcomes for people with Ds? This is not science fiction; not some far off fantasy like master stem cell therapy. There are brilliant researchers out there right now searching for said therapies.

They can’t do it alone though. They need samples, thousands of samples. They need a Down syndrome bio bank and a patient registry. Below is a chart showing where Ds research stands in comparison to Autism and Cystic Fibrosis in the area of raw data/samples.



We can do this. We can bolster Down syndrome research by raising funds to support our researchers. We can participate by donating hair and blood samples and key information for a Down syndrome biobank and centralized patient registry. We can give researchers what they need to build the healthy future our children, and all people, deserve.

This August you will get the chance to be a part of it all. It’s coming. Are you ready? We are.

Unravel the Mysteries

I say that I want research to unravel all the mysteries of Down syndrome... why people with 47 chromosomes have certain higher health risks and other lower health risks than people with only 46... but then I picture a beautiful sweater with a tail of yarn being pulled and before my eyes it unravels and disappears. Queue my endless pondering of the physiological make up of humans... how their personalities might be connected to their physical selves.

My friend Becca over at The Bates Motel is hosting a blog hop and asking the question: What would you like to see research achieve for our kids in the near future? Top on my list is a cure for Alzheimer's disease. That is pretty much the only health-risk I fear now for my girls. People with Down syndrome are prone to early Alzheimer’s and in fact show physical signs of it in the brain as young as four months old.

In a nutshell, almost all people with Ds have brain changes characteristic of Alzheimer’s disease, yet only about 50% of them develop the symptoms of dementia. The 21st chromosome is responsible for making the chemical APP which turns into plaques that wrap around nerve cells in the brain. That plaque is the precursor to developing Alzheimer’s. So why don’t the other 50% of people with Ds develop the disease? Answer that question and you probably will have the cure.

I don’t just fear Alzheimer’s for my girls... I am afraid it will get my mother like it did her mother. I am afraid that one day it will come for me. I hate Alzheimer’s, hate what it did to my grandmother. It took her short-term memory. It took her processing speed. It took her independence. It took her desire to be alive.

If curing Alzheimer’s somehow led to early preventative drug therapies for people with Down syndrome that had concurrent effects on cognition which had effects on personality development, would I still want it? Yes, yes I would.

I refuse to trade my girls’ best possible health for some adorable personality traits that may or may not be tied to the continued unbridled activity of a third copy of the 21st chromosome on their brains. Who am I to say that because I love them as they are, they can never be allowed to change?


Check out these other posts on research and Down syndrome... especially The Ordinary Life of an Extraordinary Girl because she says it, OMG... she says it!

Does Your Heart Go Out to Me? Then Act on It

Thursday 3/21 is World Down Syndrome Day. Last year I spent the day at the United Nations in NYC with hundreds of other advocates. We hoped that the Convention on the Rights of Persons with Disabilities would move forward, and that the United States would sign the disabilities treaty. Last December the US Senate chose not to ratify it.

Last October, during Down syndrome awareness month, we wrote posts for an awareness blog hop. You learned, once again, that our kids are as equal and amazing as your kids. But you already knew that because you have seen the videos, pictures, and news articles about people with Down syndrome being... well, being everyday people.

Then this month, Lexi’s "I’m Jealous of You" post got picked up by Mamapedia and Scarymommy and, after reading that post over a few times and digesting the comments, I realized that you don’t really understand that people with Down syndrome (and other neuro differences) are equal to you.

Lexi is an excellent blogger with a ton of great posts, but that post... that moment of personal venting and frustration is the one that got picked up and mainstreamed. Why? Because that post is viewed as the honest truth of mothers of children who are disabled. That post is what the greater public believes is true and thus, it is welcome on the grand stages. The deeper truth, the reasons behind what makes our lives a constant battle, the inequality of our children and how that frustrates and angers us (or makes some of us jealous) is not invited to speak up.

Here are just a few of the responses to the post,

"You are raising a child with an extra chromosome of LOVE. You are beautiful. You are stronger than the rest of us."

"Awww…you deserve a medal. All parents with special-needs kids deserve a medal. Thanks for a great post."

"My heart goes out to you and all the moms of special needs children. Those children are so lucky to have you. We are here for you! xo"

I feel like all of this awareness has opened the door for us but we still don’t have a seat at the counter. We are tirelessly sharing our stories, our pictures, our lives in the hopes that awareness will bring equality. But awareness on its own will not do that.

Awareness elicits various responses:

Affectionate pity — "She is so cute. He is an angel from above. Those kids are so special." (Those kids are different. Those kids are not fully human.)

Renewed gratitude for your own situation — "Wow, thanks for reminding me of how blessed I am" (And how not blessed you are, and how awful it must be to be you.)

Elevating the parents to a status of Other — "You are stronger. You are amazing. You are special." (You are different from me, You are separate from me.)

Share it, off the hook, self back-patting — "I reposted this on my wall so everyone can see that I think you are awesome and kids like yours are so special." (I accept you and pass you on. I’ve given you my support.)

While I believe that all of those responses are initially well intentioned, they do nothing to further the rights of people with disabilities to have full inclusion in society, proper medical care based on need and not congenital diagnosis, full protection by society, and to be seen and treated as a normal part of our culture.

Awareness must lead to action or it is futile.

So this time (and don’t feel like you have to wait for World Down Syndrome Day or Down Syndrome Awareness Month) I ask you to act on what you now know, what you are aware of. The next time you are in your child’s classroom, look around. Do you see any children with Down syndrome or other neuro or physical differences there? No? Ask the teacher, ask the principal, "Where are they? Why are they not with my kids?" Tell them that you believe in the equality of all people, and the rights of children like mine to be educated in regular classrooms alongside their peers (your children).

Disability Snobs

It all started when friend of mine left a comment on a blog post about how she sees different disabilities, uh... differently and cannot lump them all together when thinking about big questions like "Are People With Disabilities Contributing Members of Society?" She referred to herself as a disabilities snob.

Then another friend asked what that was. Then someone else posted the question on their Facebook wall. Then a bunch of people chimed in, and eventually the whole thing left me wondering what it really means to be a disabilities snob.

Ok, so snob connotes superiority and a condescending attitude toward someone believed to be of a lesser position. But I don’t think that is how Kim meant it. I think she was saying it like I might say "Masha is a shoe whore." No need to get all stuck on the word whore, know what I mean?

If I were a disabilities snob, would I think my kids are better than kids with other disabilities... or even better than some other kids with Ds? Would I insist on all inclusion, all the time? Would I cringe when I see my girls dancing in a room full of people just like them... only grown up? Would I do my best to raise them to not want to be part of the "special clubs"? Would I feel insulted if a local church invited my girls to come to a special activity night for people with disabilities?

If yes, then I am definitely not a disabilities snob because none of that is where I am at these days.

I can see how Masha and Autumn could grow up to be super friends to other people with disabilities like their own or even more profound... The two of them go beyond tolerating their sister... they include her. I think M&A can move in both circles... perhaps sometimes learning or playing in a fully inclusive environment and other times doing the same in a group designed just for people with disabilities. I want Masha and Autumn to spend time in both worlds because I believe that is how they will bridge the gap to make it one world.



Right now Masha is in Gen Ed Kindy which is a lot of work and stress for me, and so far I am not sure it is the best way for her to learn but she sure is coming along. I wish though that I could find some extracurricular activities, like a dance class, that was only for children with special needs. Why? Why not fully include her all the time? Because sometimes it would be nice to just have her be exactly who she is without the pressure that comes with standing next to The Ableist.

The same goes for Autumn... she is in a reverse-inclusion preschool, which means there are more typical kids in her class than children with identified special needs. But it would be awesome for her to have someplace to dance, or play, or just be herself with a bunch of other kids who aren’t seen as The Species Typical.

That is why in some ways, our house is the best place of all. We have five young children, boys and girls, typical children and those with differing needs whose levels range from mild to profound depending on the activity. Sometimes they all get on the table and dance together, or they all scream it up tearing apart the living room, other times they break off in natural groups... that change players depending on what is going on... Masha and Autumn sometimes keep up with their brothers playing ball or wrestling, other times they are perfectly happy to chill out with Kimani (ok, so no one ever really chills out with Kimani because chill is just so not her, but you know, they play with her). It is a place where they can all just be themselves, where they get to decide when to be "fully included" and when to be "self-contained".

The bottom line is that I think most adults with Down syndrome are on the cusp... There are times they are interested in and want to be a part of typical age appropriate activities, and there are times when they would be perfectly happy to spend a Friday night at home watching a Disney movie rather than hanging out at the local club drinking Margaritas. To try to push or pull them one way or the other, that to me is what it means to be a disability snob.

There are a lot of people talking about these issues, a lot of talk.... lots and lots of talk. But not so many voices from the ones who are walking the crawl. I want to hear from those parents. What do they think it means for their child to contribute to society? What do they think it means to be a disability snob? What do they think of ableism?

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.

The Wicked Stepmother

I came across a blog written by a woman who is the stepmother of an 11 year old girl with Down syndrome. This mom is young, and pretty, and struggling with rage and resentment. Reading her posts ruined my day. I know lots of kids are ignored, unloved, screamed at, disdained, and all kinds of other descriptors that border on abused but when it is because the child has Down syndrome that hits close to home.

"I could see all these great attributes in her, attributes which she would receive compliments on almost regularly. For me, however, all I could see was the disease. Ugliness. Stupidity. Mental inabilities. Physically odd attributes. A disability. A down syndrome."

"Give her away!" I yelled at the screen, "Just give her away to a family that will love her."

What really irks me about the blog is that the whole thing is dripping in Christianity. As in this excerpt,

"Today I needed an extra dose of prayer. Perhaps I got it but ignored whatever God was trying to send my way. In fact, God knows what I need. He gives what I need every day. Yet failures threaten to take over - and oftentimes they do. This weekend (child’s name) became a full-blown nuisance. This weekend nobody really wanted her. This weekend she was tossed around from family member to family member. Tag! You're it!"

Or this gem which makes me wonder what her hands have done...

"Now, when I feel overrun with guilt over what my angry lips have said yelled or what my hands have done out of hatred, I can see that God is there beside me. He is with the ones I have hurt, too. He is their comforter and my redeemer."

WTF? I am a stepmom and an adoptive mom... I get it, it’s complicated bonding with a child who didn’t spring from your loins.

My stepdaughter looked very much like her beautiful mother and growing up she made the same facial expressions as her mother (the eye roll, the FU half smile, the evil glare) and so she was a constant reminder of another woman my husband had once loved. But as much as I abhored that woman, I never took it out on my stepdaughter. I grew to love that little girl and I wanted her to love me. Now she is an adult and I see both her mother and myself in her. Hopefully she retained the best of both of us.

 

My older adopted daughter was so alien to me. With a judge’s signature she became mine for all time... but she didn’t feel like mine. I was grossed out over her boogers, her poopcidents, sharing a straw with her... I admit that I often felt like the fulltime caregiver instead of an adoring mother. I knew that those little things that grossed me out were anachronisms still present due to her having Down syndrome. I knew that these were things beyond her control. Knowing it did not help fix my heart. I loved the idea of loving her, but I did not feel a motherly love for her. So slowly it grew that I worried there might be something seriously wrong with me. I have a best friend who fell for Masha hard, and all she ever saw was the beauty, the cuteness, the dearness of her. She would laugh at the booger kisses, share her food, and clean her up like none of that bothered her at all. Her love for my daughter was a different lens for me to see through. Her love for my daughter helped me to be the best mother I can be be to Masha.

I wonder what it would be like to combine those two scenarios and drop the cute baby phase out of it (that mom got her step kid past the toddler age). I can understand that mother’s feelings but I cannot relate to her refusal to try actually loving the kid as a possible solution to their fractured relationship. Love is not just a feeling... it is not something that happens to us or doesn’t... it is action. If I could give that mother one piece of advice I would say, "Fake it till you make it." Smile at your stepdaughter, hug her, paint her nails, forgive her her mistakes, let her play the way she wants to, praise her, protect her dignity, compliment her, be a model for her of what a Christian woman should be like. And one day you will find that you aren’t just acting in obedience to your God, but also out of a real love and enjoyment of this girl who will forever see you as what a mother is.

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.

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.

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

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

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.

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.

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

<a href="http://theunknowncontributor.blogspot.com/"> <img src="http://farm9.staticflickr.com/8456/8030173311_c6e1064e3d_m.jpg" alt="T21 Alliance Blog Hop" width="150" height="150" /> </a>

Share this Hop! The more the merrier!

Blog Hop Code
There will be a link "get code" link at the bottom of each blog hop – it would be great to click, copy and paste the code to your own blog. When you do that, you yourself become a host for the Blog Hop. You help share the diversity of expression, thought and belief in our writing community when you include the voices of everyone else in the Hop.

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 :-)