Sarah Palin and the R-word: More Than PC Dogma

Recent discussions are a good occasion for me to write this post, which has been on my mind and in scribbled notes on my desk for more than a year. Those discussions surround Chief of Staff Rahm Emanuel’s decision to describe his opponents in a strategy session as “f—— retarded.” Denunciations from the Special Olympics and other organizations were ignored until days ago, when Sarah Palin weighed in with her rebuke. He has subsequently apologized.

Even among conservatives and others who oppose Rahm Emanuel, the consensus is that Sarah Palin’s facebook post was a political maneuver–whether foolish or inspired–and nothing more. According to Ann Althouse, “This is a good place for Palin to posture, but, seriously, I think that anyone who takes this trumped-up offense seriously is… pretty silly.”

I do not believe this is a trumped-up offense or silly. The outrage Sarah Palin expressed was just what I have felt when Al Gore talked about the “extra-chromosome right wing,” and when a cruel but anonymous person coined, “even if you win, you’re still retarded.” I’m not a stickler for people-first language, and I don’t need “Congressional legislation that would remove the word [retarded] from federal law.”

But Gov. Palin’s words ring true to me, because they could easily have been mine. I, too, am a family member of a person with Down syndrome. “Retarded” and similar epithets offend me on at least three levels.

Making Light of a Real Tragedy

First-graders–in the depths of their human depravity and the heights of their childish creativity–call one another babies. This comparison is insulting because the classmate is not, in fact, a baby. The insulted child, and sometimes his mother, is enraged.

But have you noticed who is not enraged? Where are the advocates defending all those insulted babies? Something like, “on behalf of my two-month-old, I am upset to hear him compared to playground weaklings…”

No?

I bet none of you parents have ever made such a response, even in the throes of irrational emotion. I bet there has never been any irrational emotion stirred up by this epithet (unless you are the mother of the insulted six-year-old.) Babyhood is a natural state of affairs, a good one, and a temporary one. No one is grieved because their son or daughter was born as a baby.

Not so with “retarded.” When I hear the word “retarded” bandied about I always react emotionally, though I seldom say anything. On one recent occasion, I was with some dear friends I have known for years. Their nine-year-old called his younger brother whom I will call Daniel, “retarded.” It was said teasingly, without cruelty; he might as well have said “goofball” in context. But my internal reaction was immediate and intense.

“No,” I thought, “Daniel is not retarded, Mary is. Don’t you understand that? Do you know how many hours we’ve put into fighting ‘retarded’ and how hard she’s worked and how far she’s come and all she’s accomplished and all she hasn’t accomplished and how much we love her and that in twenty years we might lose it all? ‘Retarded’ is Mary’s personal cage. She paces it’s perimeter, chafing at her limitations while her family stands outside and tries to break her out. Don’t you make light of our tragedy! Your brother is perfectly fine.”

Just as you would not mock cancer, or the loss of a limb, so you should appreciate the gravity of “retarded.”

Equating Willful Stupidity or Moral Failure with True Disability

Nobody mocks a baby for acting like a baby. It’s not the baby’s fault. But if a six-year-old acts like a baby, his immaturity is mocked because he isn’t one.

Most people would agree that it would be cruel to mock a retarded person for acting retarded. He can’t help it. It isn’t his fault. His incompetence is innocent.

But sometimes people of perfectly normal intelligence do the most ridiculous things. Proverbs calls these people “fools.” It is our human urge to call them out for their willful stupidity. Our drive to berate them as vividly as possible contributes to the euphemism treadmill.

When I hear the word moron (which used to be a technical, clinical term), it does not bother me. I know that moron no longer gives the hearer a mental image of someone with Down syndrome. It means “willfully stupid” or “fool.” “Retarded,” on the other hand, still creates that image of a person with Down syndrome.

The willfully stupid deserve to be castigated. But the truly retarded do not. Those two things should not be equated. When you vividly link my sister’s disability with the flagrant irresponsibility of your enemies, you are dragging her along through their mud.

Vividness is not always bad; it is a tool. It increases the impact of your rebuke. It can help you make the point: “You aren’t using the brains God gave you.” So if you insist on saying, for example, “You are acting like you are retarded [when you're not].” I won’t complain. Much.

This is a good time to mention, it is not about the word. It’s about talking as if the mentally disabled are sub-human.

“Mouthbreather” is another example of that reach for a vivid comparison. Mouth breathing is part of the common cluster of symptoms that come with cognitive disability. Kids with Down syndrome struggle with chronic sinus infections which lead to a cascade of further medical problems. Mouth breathing is part of that cascade which leads to a vicious cycle that we, and other families, have fought for years. A quick search shows that this term is a favorite insult in the comment sections of blogs on both both sides of the political spectrum.

Do you really mean to link this depravity to my sister’s disability as if it’s an obvious thing, as if of course people like Mary are always acting like that?

I linked the post above, even though it is several years old, because it was the first time I had seen this term used in the blogosphere, and it stunned me enough to make it memorable. But I know the author does not intend to dehumanize people with disabilities. Even if I didn’t know disability is a part of his personal life, this post reassures me that he and I are on the same page about those who do dehumanize the disabled. Few people know anything about mouth breathing, and it is all too easy to use a word without knowing where it comes from.

But sometimes there is no accident. Sometimes it’s clear from the context that a person is displaying a vicious disdain, in it’s purest and ugliest form, for the cognitively disabled.

Contextualizing “Retarded” Amidst Obscenities

As always, context is king. In an unguarded moment, Emanuel placed “retarded” beside a vile obscenity, where he thinks it belongs. I’m sure that he holds my sister and people like her in utter contempt.

There is really nothing more to be said.

Introducing…

My daughter, Grace Kauk, is joining me as a contributor to this blog.  I think you’ll enjoy her insights.   Those are her tweets down on the right sidebar.

Five Years Ago

Qadoshyah at Got Down Syndrome is ruminating about the birth of her brother five years ago.  It is a good and contented as ruminating should be.  She writes:

So, today we will sing “Ha day” (Happy birthday), as Osiyyah says, to him & his sister. And, today, as every other day, we are very thankful God has put Osiyyah in our lives.

Ha day to you, Osiyyah!

3. Acknowledge and Treat Gene Over-expression

The year my daughter, Mary, was born was the year that the old paradigm of Down syndrome started to crack.  Prior to that year, every one just knew that Trisomy 21 was a static condition that didn’t change and couldn’t be treated.  But in that year a parent got on the new thing called the Internet and started looking at what was known about a few of the genes on Chromosome 21.  Based on what she learned, she developed a protocol to treat her daughter.  She realized that her baby daughter was not yet retarded, and so she looked for what she could do to stop the negative progression.

Making Pancakes

To understand what that mom did, imagine you are making pancakes with a recipe that comes in twos.  The recipe calls for:

Making pancakes with a recipe that comes in twos
2 milks

2 flours

2 salts

2 baking powders

2 eggs

2 butters

Now, imagine that someone comes along and dumps in an extra cup of flour.  You no longer have pancakes, you have muffins!

Can your batter be fixed?  Well, yes, you can add in some extra liquid.  It won’t be the same as your original recipe for pancakes, but it will still be good.

The human chromosomes are a recipe that comes in twos.  Trisomy 21 comes along and dumps in a bunch of extra metabolites.  Can it be fixed?  Well, we can’t make it the same as the original recipe, but we can adjust some other ingredients to get closer to the original plan.

“Gene over-expression” means that because a particular gene has three copies instead of two, the cells make too much of the particular protein coded for on that gene.

It’s a New World

Unless you acknowledge the fact of gene over-expression, you will ignore the most potent tools to treat the cacophony of metabolic errors that is Trisomy 21.  Understanding gene over-expression gives us a focus for our research, and it provides suggestions for supplemental nutrients and drugs to ameliorate the imbalance.

Those suggestions are coming rapidly now because of three major developments in the last several years.  First, parents themselves are Read more »

4. Research the Vaccine Controversy for Yourself

This is the post which is going to make me unpopular.  Vaccines are so doggone controversial, yet so much a part of the medical orthodoxy that questioning them is tantamount to heresy.  But I gotta say this to new parents of children with Down syndrome:

You simply must research the vaccine controversy for yourself.  You just must.

The statistics of incidence of autism in the general population are bad and getting worse. But  in Down syndrome the statistics are terrible.  Various estimates range from 1:10 to 1: 5.  Something serious is going on if one out of every ten children with Down syndrome also is diagnosed with autism.

It didn’t used to be.

On the Einstein-syndrome email list the ratio holds true:  about one in ten.  And from the stories and struggles told by these parents, the DS/autism dual diagnosis is just heartbreaking.  Down syndrome alone is a walk in the park compared to dealing with autism piled on top.

If this health issue is so prevalent, then we parents must do all we can do to prevent it from happening in our own children.  Once again, Professor Parent PhD must get on the Internet and research a difficult topic.

If you do not know the best theories about the causes of autism then you do not know how to protect your child. Let me say that again:  If you do not know the best theories about the causes of autism then you do not know how to protect your child. Period.  If you do not know the risk factors for autism, then you do not know how to minimize the risks in your own little guy.

As you research, be sure to read about gut dysbiosis, contraindications for the various vaccines, the safety studies which have been done on vaccines, particularly the safety studies done in  medically complicated populations, and alternate vaccine schedules.

As you research you’ll begin to understand the social concept of herd immunity, and the expected collateral damage to a percentage of the herd.  Herd immunity is a great social concept for policy makers.  But for me as a parent, it is my job to keep my own high-risk child from becoming the collateral damage.  The first step to do that is to research the vaccine controversy for myself and then act on what I learn.

If you have researched this topic and have relevant links for other parents to look at, both pro and con, please post them in the comments.  Please write a sentence or two on each link, why it is relevant and/or helpful.  And limit your links to two per comment or WordPress’ spam filters quarantine your comment and I may not see it.   You may post multiple comments if you have multiple relevant links.

Vine-heart-line

Top Fifteen Things New Parents Should Know

This post is #4 of a series which was written specifically to a couple who have a baby boy with Down syndrome. These fifteen are the things I would do if I once again had a baby with Down syndrome.

5. Get a Neurodevelopmental Evaluation and Do the Program

The most effective thing my husband and I did when our daughter was a baby was to enroll her in a neurodevelopmental (ND) program in her first months of life. Prior to this, we investigated the options offered by our state, and we did not like them.

Early Intervention was offered. It involved either enrolling my baby in a day care program where therapists would work with her for a few hours a week. Or, it involved having therapists into my home where they would work with my baby. In both of these options someone else worked with my baby. The work they would do was just a few hours a week at best. And this left me with the whole rest of Mary’s life and not knowing what to do.

My overwhelming impression of the Early Intervention program was their pervasive low expectations. What I was shown were a bunch of nifty-cool coping techniques that they would teach my daughter. Without even trying to see if she could achieve normal function, they already relegated her to a life of second best.

Then I called the staff at NACD, an organization which promotes a neurodevelopmental (ND) approach. What a breath of fresh air! The lady I talked to said, “We have our DS kids reading at age three all the time.”* She was the first person I talked to in Mary’s first months who did not express sympathy. She had a positive attitude; she had a plan.

I was skeptical. So I called parent references. Over and over again I heard something like this, “They told me he would never [fill in the blank], but now, he is doing all that and [description of new skills never dreamed of].”

So we enrolled Mary. It was expensive. And because it was out of the mainstream we paid out-of-pocket. My advice to new parents is to spend the college fund now.

[Off-topic rant follows. Skip this paragraph if you are offended by rants. The most effective approaches we have used with our daughter over sixteen years have not been paid for by insurance or by government programs. I think there is a reason for this. Insurance-paid and government-paid interventions do not have to work to keep the paychecks coming. Therefore there is little incentive to adapt to the most effective methods. Actually there is a reverse incentive: if the kids graduate out of the program, the client base dries up. In the privately funded programs, the experts only get paid if the parents see continuing positive results. The incentives reward results instead of the status quo.]

Mary continued with NACD and then later with our same neurodevelopmentalist at the newly formed ICAN for at least ten years, and then sporadically since then.

The typical therapist looks at some subset of your child and checks to see if one of the techniques in her bag can be applied. If your child doesn’t progress, it is not the therapists’ fault in their opinion, it is your child’s fault. Not so with ND. The evaluator looks at your whole child. The evaluator brings the best of all the therapeutic branches, both mainstream and alternative, and chooses therapies to recommend from all areas of development (fine and gross motor, auditory/visual, tactility, oral, verbal, etc.). If your child doesn’t progress, it isn’t the child’s fault, it is the fault of the evaluator who hasn’t found the solution yet.

One big advantage of the ND approach is the network. The neurodevelopmentalist at ICAN (ND) is in touch with colleagues who have worked with thousands of kids the schools have given up on. Oh, the children may be still in the school, but the school no longer has pretensions of overcoming the learning challenges. The parents of the ND clientele are go-getters, researching and trying the most promising ideas. So, the ND evaluator has a pipeline of information of which new therapies work and which don’t.

For example, right now in the Down syndrome community there is a controversial new therapy using an easily prescribed drug. The therapy promises to stimulate growth of new brain cells. New therapies for DS are a dime a dozen and most are junk. But, because the ND’s are working with so many parents, they are getting breaking news of the efficacy and side-effects of this therapy. Clinical trials on this type of stuff cost millions, and for DS will probably never be done. But, families who are working within the ND network have the info.

The ND professional relays that information, both good and bad, to other families who can take it to their own pediatricians to evaluate and maybe try. Meanwhile the ND evaluator follows the kids developmentally, and provides testing and constantly updated developmental advice.

The neurodevelopmentalist works from a developmental profile which is the core of the ND approach. This profile looks at the natural development of the brain, the “very good” design, which starts with the collection of unconnected neurons at birth, and progresses to the highly connected and organized system of neurons we have at maturity. This means that the ND approach puts you right within that “very good” design. The sensory input that the brain receives naturally is what causes the neurons to organize and moves the normal brain through these developmental stages.

But sometimes something stops this normal, natural progression of neurological organization. It may be a birth injury. Or some chemical exposure, or some chromosomal defect. Whatever it is, it halts or distorts the natural development of the brain.

The organizations of ICAN and NACD tap in to 50 years of work using specific, targeted sensory input to overcome the blockages where development has stalled. At an ND evaluation, the evaluator would determine how far the neurological organization has gone for a child in each of the major developmental areas. For example, Kay Ness is the ND who comes to my area. She looks at everything from prenatal reflexes all the way to the advanced skills of the multi-lingual, manually-skilled marathon runner. Based on her extensive pre-evaluation questionnaire (with lots of questions about medical, developmental, and educational history), she will look for potential causes of those developmental blockages.

Then Kay would write an educational/developmental program for you to do at home. The program will target specific input for the next steps of brain development. You will be trained to do the program. It is likely that you will also receive recommendations to pursue with your pediatrician, (maybe suggested blood work, or a medical test), or a recommendation of a lifestyle or dietary change to investigate.

What ND offers is a way of looking at the whole child with hope. ND looks at the design of our brains, and works within that design. ND recognizes that the parents are the final experts on their own children, and will equip you with the tools to help your child.

*(Teaching preschoolers with DS to read is now accepted by innovative teachers and therapists. In 1992, when Mary was born, it was unheard of, except by rare educators who worked within the ND model.)

This post is part of a series begun here, the Top 15 Things New Parents should Know

6. Prioritize Behavior

Good social behavior is the most important skill we can teach our children. An adult who is brilliant but who has poor behavior is not welcome anywhere. An adult with a severe mental handicap but with good behavior is welcome everywhere. The biggest handicap your child can have is poor behavior.

Bad behavior doesn’t just go away. It must be trained away. Behavior that is cute (and accepted) in a two-year-old is no longer cute in a twelve-year-old. One mom wrote about this recently on the ES email list:

What do you do with your kids when you have weddings, funerals, baptisms and other events when your child has to be quiet and not move? We try to not visit other churches because my son is on the move. He weighs over 100 lbs….We had a very hard day yesterday at my nephew’s baptism. [My son] doesn’t stand still, he has a short attention span and has poor impulse control.

The sad fact is that the world is already prejudiced against our kids. Society’s tolerance for poor behavior in people with Down syndrome is almost non-existent. My advice to this mom and to you is to begin now to train self-control.

If your only training happens rarely at these events, it isn’t enough. When my children, including Mary, were little we used to practice “church” at home. I have a set of Bible stories on tape, 30 minutes each. I would have the children sit still and listen quietly for the duration of the tape. We did this daily. So, each day we practiced 30 minutes of quiet sitting and listening. If they were bored, too bad. The point was to train quiet sitting. I allowed quiet activities for their hands, like drawing or coloring.

Be aware that you get more of whatever it is that you reward. So, if your child misbehaves in a setting where he should be quiet, and the result is that you take him out and let him run around, then what did you just reward? You rewarded misbehavior.

For this reason, I determined that when I had to take my children out of church (or other quiet venue), then I made sure they would not like what happened out there.Sometimes I  sat with an unruly child in some dark room down a back hallway in the church. If they refused to be quiet in the service, then they got to practice being quiet while held tightly on my lap in a boring old dark room.

Be aware of the dangers of intermittent reinforcement. If you sometimes relent (reward) and take the child out of a venue when they misbehave, then you make it much harder to ever extinguish that misbehavior. If you decide to train quiet self-control, go into the training 100%. If you sometimes remove your son from the church service and allow him to play with toys in the nursery instead, don’t be surprised if every single time he tests you to see if he’ll get the nursery treatment.

The work put into training behavior in these early years will pay off with an adult who is gladly welcomed into society.

Vine-heart-line

Top Fifteen Things New Parents Should Know

This post is #6 of a series which was written specifically to a couple who have a baby boy with Down syndrome. These fifteen are the things I would do if I once again had a baby with Down syndrome.

Flu, H1N1 and a sober warning

There are few topics of parental decision making that generate more angst than vaccines; and this fall the decision about whether we should give our children not just one, but three flu shots has generated much discussion on the ES email list.

Even if you are inclined towards vaccines generally, this set of six videos raises important issues for parents.

The most interesting piece of new information (and there is a LOT of new information here) is that the WHO changed the definition of “pandemic” in the spring of this year (see video 2 or 3).  It used to include the idea of mortality.  Now it only means that people get sick, with no indication of mortality.

The rest of the set of six is available here.

(HT:The Anchoress)

Holiday Hint for Family Interracting with Your Non-Verbal Child

If you have any anxiety about how to help relatives interact with your non-verbal (or minimally-verbal) child, this forwarded post is for you. This post, which just came through on one of the lists that I follow includes an excellent description of  “Jimplay.”

A while back Dr. Jim [James D. MacDonald] posted this in response to a parent who was having some anxiety regarding an upcoming Thanksgiving family get together. This parent didn’t want their child to be ‘tested’ by extended family members, and also wanted a confident way to address the myriad of questions that were surely to be thrown at her. She was looking for direction for her family. Here’s his response:

Dr. Jim wrote:

“_______’” family.

My child can do more than you think!

Interact WITH not AT my child.

Enter physically in his world and observe him silently for a short while.

Become aware of his interests and ability level.

Then, gently join into his activity without disrupting it.

Do what the child is doing.

Do not do a lot more than he is doing- but be active.

Match his movements; act in ways he can try to do.

Respond to his movements with similar, related movements.

Talk about the here and now, about the child’s experiences.

Be animated: be more interesting than what is distracting him.

Do more of what you do when he stays with you

Do less of what you do when he leaves you.

Match his speech: talk in ways he can now talk (this will help him talk more.)

Respond to his speech: show him you are interested.

Wait silently for him to take his turn

Don’t praise him: enjoy him instead; your response is the best reward.

Take turns with action and talk: be sure to give and take.

If you don’t understand him, treat it as a foreign language and simply give him an English word that fits the situation.

Limit your questions and demands: comment instead.

Bottom line: the more you enjoy each other, the more my child will learn with you.

Irrational Emotionality

As the mother of many mixed-dominant kids,  (kids who have run-of-the-mill learning disabilities), I have experienced plenty of their emotional meltdowns over stuff that should be simple and easy.  Here is my trick to get through these meltdowns quickly.

Here is the scenario:  You are trying to teach some simple academic thing, and your child is completely irrational about how difficult it is; they are unable to even watch you demonstrate it, and instead dissolve into tears about the impossibility of understanding.  Sound familiar?

When the child reaches the point of irrational emotionality, all teaching becomes impossible, because the child is simply unable to process anything through all the emotion.

To understand what is happening inside his head, imagine viewing his two hemispheres in an MRI scan.  Neurons in the subdominant hemisphere, where emotion lives, are all firing, lighting up that area of the brain in twinkling lights.  On the other side, where logic lives, all neurons are dark and quiet.  There is no activity in the dominant, auditory, logical, factual part of his brain.

To recover from an emotional meltdown, you must get your child’s brain firing neurons over on the logical, factual side.  How?  Math facts.  Math facts are cold, hard, and logical.

When I have a tearful child who is simply unable to process anything amidst the swirl of emotion, first I demand their attention.  Then I ask for recall of a math fact that I know is easy for them to answer.   I keep my voice calm, low, logical, emotionless. They are usually yelling, sobbing or otherwise expressing emotion, but I persist until I get an answer on this one easy math fact.  Then I ask another.  And another.  As they begin to calm down I ask more difficult math facts, but again I keep it to what I know they can answer.

Here are examples of math that I ask of them at this time, depending on their age and abilities.

  • Simple square roots (What is the square root of 100, 81, 64, etc.)
  • Count backwards from 100 (This one is great, if they can do it.  They seldom get past 80 before logic is in control again.)
  • Basic multiplication and addition facts (2+2, 4×5, etc.)
  • Count backwards from 20 or from 10
  • Count to 10
  • What is the next number after …?
  • How many fingers am I holding up?

This works with my kids everytime.  If they are willing to obey and answer the question, it takes about two minutes to move a child from irrational emotionality to having that emotion under logical control.  I can usually tell when they are getting the control, because they start giggling.

This doesn’t deal with problems of the will, but it has greatly helped my family to teach our kids emotional control.