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.

The War on Big Bird

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



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

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

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

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

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

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



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

C'mon Ann

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

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



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

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

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

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

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

Finally She Opens the Gifts

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

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

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

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