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.

You've Got Homework

Remember way back when you were in school and the most your parents had to do was give you lunch money and sign your report cards? (Unless you got a really bad test score and then they had to sign that too.) Well, sometime between the 70’s and the 90’s someone decided that parents should sign nightly homework sheets, and that my friends was the beginning of Parent Homework.

After that came the reading sheets giving bedtime nighty-night stories a whole new purpose. Though I felt uncomfortable "reporting" the stories I read to my children each day, I went along with it.

And now, 15 years into our school/parenting adventure, we find ourselves with a 1st grader who gets homework that a six year old child cannot complete independently. Our role has changed from providing homework oversight to being active homework participants. One of us has to go through the work with him... reading full length poems, explaining complex instructions, walking him through the questions, and checking off five different parts to the homework each night.

Because Jade’s homework requires about 45 minutes of parent participation, it gets done when and if I have the time to do it... which is not necessarily when he would like to do it. So for the first few weeks we battled over it and 45 minutes went well over an hour. Some nights it didn’t get done, and at the end of the week the packet would have some blank pages.

The first time the teacher sent the packet back and asked that Jade "make up" the blanks, I wrote her a note explaining that what gets done is what gets done and I am not carrying over last week’s homework into this week’s. At our conference I explained my reasoning, and I thought we had an understanding about how homework would go.

Until the week when there was only one night it worked out that homework got done. First there was the Frankenstorm, then Halloween, and then momma left town for a few days. When I got home on Sunday night I found Jade’s homework packet in his backpack with a note saying that he was to complete it over the weekend and bring it in on Monday. At first I was annoyed with my husband for not looking in the backpacks on Friday and doing the homework with Jade over the weekend... but then I realized that the real problem is that the homework is not appropriate for a first grader to do on his own. So I wrote a little note explaining our week and said that we would not be making it up during the coming week.

When Jade came home from school on Monday furious, throwing his backpack on the ground and yelling all the way up the driveway, I knew something went very wrong at school. I asked him to talk to me about it and he finally told me that he had to miss recess to stay in and do his homework packet.

That was it for me. I was pissed. If mommy doesn’t do her homework, Jade misses recess? I wrote to his teacher and suggested a positive alternative to Jade missing out on something he loves. She sent me back excerpts from the school’s homework guidelines and suggested I use my "sticker reward" idea at home. I won’t bore you with the back and forth details, but it went on for a while with the teacher insisting that Jade’s homework will get done, if not at home then in school.

Now if the homework could be done independently by a 1st grader, I would agree with that, but it can’t. So I said either he gets homework that he can do on his own, or he does what he can on the packets and loses no positive activity time at school as a consequence of not completing the whole packet.

Queue the meeting with the teacher and principal wherein I learned that they know the work requires adult participation. I was told that the school is providing us with a bonding opportunity, and a way to invest in our child... that there is not enough time in the school day to do all they need to do, so the homework provides a chance to go beyond just practicing math, reading, and spelling. When I said that I don’t think it is appropriate for the school to be pushing into my home with bonding and investment requirements, I got the "You are the crappiest mother in our district" stare.

So I guess instead of family game night, we are going to have family homework night. Come on children, you bring your math sheets and I’ll bring the popcorn. Woot woot, isn’t this fun?

Open Season

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

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

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

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

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

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.