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.

Beyond Down Syndrome

It is there in her face for you to see before you even learn her name, or her favorite food. Before you find out that she loves jewelry and shoes and tights and dresses and little hollow plastic balls that double as fake boobs, you already know that she has Down syndrome. The shape of her beautiful blue eyes rats her out.



Every thought you have now about her is modified by that fact. Your brain does its fabulous work of classifying her based on what you know about it. What she does that fits your schema for Down syndrome will be tucked away under, “They are all so...” and the parts of her that crack the mold will become inspirational fodder stored under, “Aww, despite having Down syndrome, she ...”

Can you imagine having something about you that was so obvious, and so pervasive, that you were unable to develop an identity apart from it?

How can she develop her individual identity when no one can see her as a person, period? No one. Not even me sometimes. She is a person with Down syndrome. You see a person with Down syndrome. Every single thing she does is relative to Down syndrome.

I don’t want to raise awareness about Down syndrome.

I want to raise awareness about being human, about having a personal identity.

I want you to forget about Down syndrome.

I want you to look at her. I want you to see her.



Let her develop her identity separately from her chromosome count. Accept her as fully human.

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?

On Becoming a Monster

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

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

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

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

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

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

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

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

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

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

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

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

ONE21—What It's Not

You may have heard a bit about ONE21 recently, perhaps at the NDSC convention, or maybe here on this blog, or on Facebook and are wondering what it is. Before I tell you that, let me say what it is not.

ONE21 is not a research project and does not support any particular research project or type of Down syndrome-related research over another.

ONE21 is not an organization. While ONE21 was initiated by Down Syndrome Achieves, it is more of a campaign, or a group effort to do something positive for people with Down syndrome. The ONE21 website is a .org rather than a .com because ONE21 is a charitable project.

ONE21 is not a parent group. The people who support ONE21 are made up of advocates, parents, and researchers. And it is our hope to engage the entire community {Ahem, friends without children with Ds, that's you :-) }

ONE21 is not interested in a cure for Ds. ONE21 firmly believes in the value of people with Down syndrome and wants the best for them. We believe research can be a gateway to helping our loved ones with Ds live longer, healthier and more vibrant lives.

ONE21 is not a competitor to any Ds organization. What ONE21 aims to accomplish will be shared by all.

OK, so if it is not all that, then what is it about?

ONE21 is a community-wide initiative with community-wide benefits. We are bringing activism into Ds research and stepping up to provide researchers nationwide with the tools they need to develop breakthrough therapies and best practices that will help our families now.

Beginning August 21st, you will have the opportunity to make a tangible and lasting positive impact on the quality of life for all people with Ds by making a commitment to strengthen research capabilities for Ds researchers nationwide. Visit ONE21.org for more information.

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.

Shoes Are Ableist

All five years of her little life, Kimani has preferred to go barefoot. She will not stand for having shoes on unless she is actually using her feet for walking. Once she stops walking, the shoes come off.

Turns out, this is a problem. It is a BEHAVIOR problem that needs to be formally and legally documented as such:



Almost everything (other than her taking off her shoes) on that document is bullcrap. The medication effect, the clapping, the escapism; all conjecture.

I called the school psychologist and we talked. I explained that shoe wearing, although deeply ingrained in our culture, is not natural and so not wanting to wear shoes is really not a behavior but in fact a preference for remaining in one’s natural state of being. I said that based on this there really is no reason for a legal "plan of action" for putting her shoes back on when she needs to use them.

She conceded that this is true but that there are RULES and that Kimani’s non-conformist behavior (I shit you not, she used that word) is affecting her ability to learn, and that of the other students because she requires extra adult attention to get her shoes back on. Then she explained that she is only following the State Department of Education regulations. Regulations defined by laws, and rules and codes... and now Kimani's bare feet have become a legal behavior problem that interferes with her education.

And it is not just bare feet... they added two other behaviors to a plan that we reluctantly agreed to this time last year. She puts everything in her mouth, even bad stuff, so we agreed that it was a safety issue and went ahead with the whole Functional Behavior Assessment process, and look where it got us. She still mouths everything and now has three more behaviors that are working their way into her permanent legal record. In case you are curious the other two are "dropping" instead of walking when they want her to and dumping toys/clearing spaces off.

I asked what they might add next, spitting food or grabbing other children’s food? And she said “Yes, that too, we could add those too if you want.” Ha ha ha, if I want. No I don’t freaking want. She totally missed my point. Kimani is one total non-conformist person who without protection from the system that is trying to help her will end up locked in a box.

I feel like her whole future is on the line with what we allow concerning these things... her access to the least restrictive environment, her legal rights and freedoms, and the path her education will take. She is headed to that place, the one that only some parents and some administrators, and some teachers and some aides know about. And I will be damned before I let that happen to her.

My first thought was that I am going to have to homeschool her. That is so not me :-( Guess I better see what all is involved in that solution.

If you homeschool a child with disability, pipe up and encourage me. Tell me how you do it.

The Butt of the Joke

An online friend of mine posted a picture on her blog of her young daughter looking at the french fries she was about to eat. It was a cute picture. But someone came along and stole it. They put the title "cannibalism" on it and passed it around the Internet.

I felt sorry for my friend. I know how much it hurts. After all, I have three girls whose pictures betray their #1 disability... their low IQs. I know what it is like to worry that someone will take something that is precious to me and turn it into a retard joke.

What I don’t get, what I don’t understand is why the world allows it. There are moderators on every board where my friend’s daughter’s altered picture appeared. Those mods did not take it down when they saw it. The general public did not comment that the picture was hateful and unacceptable.

When will the disabled stop being the butt of the joke? Long gone are the days when someone could make a meme like that using a racial slur and have it remain posted anywhere for more than 30 seconds. Likewise, gay-bashing is well on its way out of style and it is doubtful you have to worry about a public space allowing your gay child to be strung up as the joke of the day. But the cognitively impaired are still fair game? Five year olds with Down syndrome are the final frontier of hurtful humor that we just can’t let go of? Why is that?

I know what you’re thinking. It is just a few mean creepy people doing stuff like this and who can stop mean creepy people? But it’s not. It is all of us, every one of us who says "retarded" as an insult. It is every one of us that uses its catch-all abbreviated cousin, "tard" for anything we don’t like. It is everyone of us that condones Ann Coulter and Bill Maher, and even Rachel Jeantel’s use of the r-word. It is every mod that doesn’t take down the insulting meme, and every one of us that turns away in silence after we see it.

We as a culture need to decide to stop insulting our disabled population. We need to refuse to accept them as the butt of the joke. We need to refuse to allow those on either side of the political aisle to get away with the r-bomb. We need to reach out to those around us and ask them not to say it, and to stick up for the disabled. Only then, only when you care as much as I do, will it end.

Only then will these beautiful faces be safe.

Try the Ethan Experiment

Have you ever watched some crazy show where they do dangerous things and preface them with, "Don’t try this at home"? Well, this time I invite you to try this experiment yourself (but don’t blame me, sue me, or recommend training to me if you get hurt, ok?)

If you knew and loved Ethan Saylor, please don’t read this post. I hope to stir the human imagination, and you don’t need to go there.

If you already signed a petition asking the Maryland Attorney General for an independent investigation in the Ethan Saylor case and if you are pretty well convinced that specialized Down syndrome police training is not the answer to the problem here, then you, too, can skip the experiment.

Now for those who are left and feeling brave...

Step 1: Find three guys who weigh about 150 to 200 pounds each and ask them to join you on a trip to your local Regal theater.

Step 2: Once inside the theater ask your companions to tie your hands behind your back.

Step 3: Walk up onto one of the stair risers and ask your companions to get behind you.

Step 4: Tell your companions to push you over face first and fall on top of you on the stairs.

Imagine that. You are falling face first and you can’t put your arms out in front of you to brace yourself. You land hard (that is a LOT of weight on you) with your face, neck, chest smashing down into those stairs. How far apart are the edges of each step...? Not far enough that your whole face and throat miss the 90 degree angle of stair edge I’ll bet.

So counting your free-falling weight and that of your three companions you will have roughly about 500 pounds of pressure slamming your... you pick.... your eyes and nasal bridge? your nose and upper lip? your mouth and chin? your unprotected throat? into a stair edge.

Ahh, how do you feel? Be honest, this is important. What? I can’t hear you? Oh, gosh that’s right... I forgot to mention that when you hit that hard, the air in your lungs is forcefully expelled and in that position with your hands behind your back, you can’t breath any air back in. That is probably why you are having a hard time telling me how freaking bad you are hurt.

Here, let’s flip you over. Better? Huh, I still can’t hear you. Perhaps your larynx got crushed in the fall and no amount of CPR will fix that. I'll hurry up and call 911 and we can hope they get a breathing tube in past that mess you have there because I really really do want to hear how you think the experiment is going.

I don’t have Down syndrome but I also don’t have the guts to try the Ethan Experiment. It killed him, and it quite possibly would kill me too.

Stop trying to convince yourself that special training for mall cops and police officers changes the results of excessive force. No one should have to endure the Ethan Experiment over a stinking $12 movie ticket.

Don’t start telling me how it was his fault because he would not leave the theater. It was his fault for not complying, and that if the officers had actually de-escalated the situation that would have been special treatment. Because seriously, I have a drunk and disorderly post for you all about what special treatment looks like.

Don’t start telling me about the risks of being fat or having heart trouble... Even the healthiest among us risks death during the Ethan Experiment.

The only thing Down syndrome has to do with what happened that day in the theater is that is it now being used as a scapegoat. Oh yeah, and a springboard for the national Ds organizations to get money for things they have been wanting to fund for a while now.

Please sign the petition asking for an independent investigation in the Ethan Saylor case. And if you do try the experiment, well good luck to you and let me know how it goes, ok?

It's Not that Complicated, Is It?

The Ethan Saylor case has dominated my mind, my heart, and my Facebook feed for a few weeks now. I have read just about everything news agencies, bloggers, and organizations have published on it.

(Is your Facebook feed saturated with Ethan Saylor posts? Are you sick of it and fairly sure enough other people are acting on this? Well, you can skip this post if ya want to, but please don’t think someone else is standing up in your place.)



And no matter the slant, no matter the details in one post versus another, an unarmed young man died in police custody in a Regal movie theater in Frederick, MD on January 12. His alleged crime was that he refused to leave the theater after a showing of Zero Dark Thirty was over. Three police officers attempted to remove him and one thing led to another (that is my compilation of the various details I have read) and Ethan wound up handcuffed face down on the floor. Shortly after that, he ended up dead.

His autopsy report states there were several contributing factors leading to his death, and ultimately called it a homicide. The case was internally investigated and then a grand jury in Frederick decided that there was no cause to charge the officers involved with any malfeasance or misconduct of any sort.

How is it possible that a 26 year old man can go to a movie and wind up dead, and nothing is responsible for this except the fact that the man himself was defective?

The National Down Syndrome Congress explains much more clearly than I can that this is a human rights issue. When you read their statement, and find out that the man’s mother was on her way to the theater to diffuse the situation, it is enough to break your heart.

Because really... impatience, unnecessary force, and a lack of judgement is what killed Ethan Saylor.

It is true that Ethan was in the wrong when he refused to leave the theater (he wanted to watch the show again). It is true that Ethan Saylor likely got very upset when attempts were made to physically remove him (witnesses say he cried out for his mommy). It is true that sometimes people with Down syndrome are down right stubborn and refuse to move when you tell them to.

It is also true that if Ethan had been allowed to sit there in the theater and wait for his mom, he would still be alive today... and Regal would be out all of 12 bucks for the seat.

Would that have been special treatment? In my mind every unarmed, out-manned citizen should be treated with patience and the least amount of force possible until all feasible options are exhausted.

If you agree with that, then please consider signing the petition (started two months ago by Ethan’s mom) to request an independent inquiry into the matter.

Raise your hand if you love a police officer (my hand is up). Raise your hand if you think cops put their lives on the line everyday protecting us (my hand is up). Raise your hand if you think all police officers are perfect, that they never misjudge a situation, never make a bad call, and never hurt someone unnecessarily in the course of carrying out their work...

If you put your hand back down, please sign the petition asking the Maryland Attorney General Doug Gansler to open an independent investigation to find out what exactly happened that caused Ethan's death.

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?

Her Contribution

I assumed that when Ellen posted, “Are People With Disabilities Contributing Members of Society?” she was referring to people like my Kimani, people whose disabilities will preclude them from gainful employment, and most any achievement or accomplishment that will somehow add value to our society... people who will likely need to be cared for physically and financially their whole lives.

First I ask you, what does it really mean to be a contributing member of society? How is a concept like that measured? By giving as much or more than you take out of some collective pie? Deciding who is a contributing member of society is a slippery slope if there ever was one but Ellen bravely concludes that people like Kimani do contribute to society,

People with disabilities are contributing members of society. They show us what really matters in life, what it means to be human, what it means to be loved and accepted simply for being, not because of what we can or cannot do.

I know where she was going with that. It is the same place I was trying to go when I wrote “Seeing in the Raw” for the HighCalling.org a year or so ago. Kimani is human, raw human and she is loved simply because she exists. She is lovable exactly as she is. But that has more to do with inherent value than it does actual contribution to something.

Aren’t they impossible to unravel... direct and indirect contributions to society? Very few people who make direct, valuable, measurable, lasting contributions to our society would claim there is no one who motivated them or affected their desire to do what it is they did.



And I think that is what Ellen meant, that people like Kimani contribute to society indirectly by influencing the people around them to be more compassionate, thankful, tolerant, and perhaps even drive them to adopt, research cures, donate time and money, and to develop policies and enact laws. Is the butterfly who flapped its wings any less of a contributor than the tsunami it caused?

No, Kimani does not change everyone who meets her. In fact, she will likely only have true impact on a very small circle of people. But who can measure what the currents from her little wings will bring forth? Who even has the right to try?

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.

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