Thursday, October 14, 2010


I'm sad that I can't blog everyday this month like I had committed to. Life is just pulling me in every direction.

Thank you to those of you who follow my blog and the Down Syndrome Awareness campaign 31 for 21.

Monday, October 11, 2010

Isn't It Ironic

by Professor Jerome Lejeune, Discoverer of the gene for Down syndrome

"Many years ago, my father was a Jewish physician in Braunau, Austria. On a particular day, two babies had been delivered by one of his colleagues. One was a fine, healthy boy with a strong cry. His parents were extremely proud and happy. The other was a little girl, but her parents were extremely sad, for she was a mongoloid [Down syndrome] baby. I followed them both for almost fifty years. The girl grew up, living at home, and was finally destined to be the one who nursed her mother through a very long and lingering illness after a stroke. I do not remember her name. I do, however, remember the boy's name. He died in a bunker in Berlin. His name was Adolf Hitler."

Note: This story is almost assuredly apocryphal. I am leaving it here because even though it probably isn't true, it does express a truth. That truth is that we never know what our children will become. A healthy baby can grow up be a murderer while a baby with a chromosomal abnormality can grow up to be a loving and loved person. On the TV show, Touched by an Angel an episode featured a couple who found out that their unborn child had Down syndrome. The couple were sitting in a diner and the father was talking about what he wanted for his son and why he wanted his wife to have an abortion. A young man walked in wearing a letter jacket from the local high school and when the father sees him he says that he wants his son to grow up to be like that young man. With that, the young man pulls a gun out and robs the diner.


Sunday, October 10, 2010

Uncle Scott

This is my one and only brother who is 9 years older than me. Many of my friends have never even met him. In the past he has wanted NOTHING to do with his family. My parents could call him every day for 14 days straight and he wouldn't even think to call back. He'd change phone numbers and never tell us, so my parents would hunt him down and show up at his work. And then when we did finally force him to hang out with us he'd act like we were bothering him if we attempted to make conversation with him! In my heart of hearts, these family gatherings hurt. They sucked. I hated what my brother's behavior did to me and, even worse, my parents, who would drop everything to do some ridiculous favor for their son just for a moment with him.

OK, after all that, I will say that he is a decent guy. If need be, he'll go to bat for his friends and family and he's an incredible tennis coach. I love that when I played on one of his teams and we made to the finals, he paid, out of his pocket, for a limo to drive us to the finals!!! It was cool! (And we won!)

But the coolest thing is that, as of late, he's not disgusted by us!!! He will actually come to my parents house and hang out all day doing nothing but just hanging out! We don't even invite him every time. Sometimes he just comes...and it's Rio who loves it the most!

Rio has really latched on to Scott. He loves Scott's Ford Mustang especially. And now he includes Scott's name in his plans. For example, he loves to list who is "taking the train to Chicago" and who is "going to Gigi's Playhouse". He says things like this before he goes to sleep. Maybe he's make the next day's plans???

So here are some pictures of my sons spending time with their Uncle Scott.

Friday, October 8, 2010

If People with DS Ruled the World

I received this article upon Phoenix's birth. It was written by he Director of Psychosocial services at the Adult Down Syndrome Center in Park Ridge, Illinois, in 2005. I know it is long, but it is worth reading at least some parts of it!

Here is a link to the original. (May be easier on your eyes?)

What would happen if people with DS ruled the world?

If people with Down syndrome ruled the world:

Affection, hugging and caring for others would make a big comeback.

Despite the fact that my family was not terribly affectionate, I have had a crash course in hugging at the Center. I am confident that if people with Down syndrome ran the world, everyone would become very accustomed to the joys of hugging. Fortunately for me, I had a head start. My wife is a native of Argentina, and I got some intense exposure to hugging when I landed in her country and found there were 6000 members of her family waiting to be hugged as we got off the plane.

All people would be encouraged to develop and use their gifts for helping others.

In our world, too often people with Down syndrome are “DONE FOR” by others, when in fact they are great givers. If they ran the world, their ability to minister to others would not be wasted.

People would be refreshingly honest and genuine.

People with Down syndrome are nothing if not straightforward and unpretentious. As the expression goes, “what you see is what you get.” When you say to people with Down syndrome, “You did a good job,” most will answer simply and matter-of-factly, “Yes, I did.”

We believe, too, that a stuffy high society would probably not do well in the world of Down syndrome.

However, we believe that BIG dress up dances would flourish. People with Down syndrome love dressing up and dancing at big shindigs. They have a ball, and ...can they dance! (and by the way, who needs a date... “Just dance”).

Most people we have met with Down syndrome also love weddings. This should not be a big surprise. They love getting dressed up, being with family and friends, having good food, and, of course, dancing until the wee hours of the morning. (Many people love it so much, they will chase the band down at the end of the night, begging them to continue.) Perhaps, too, part of the reason they love weddings so much is not just because of the food and dancing, but because in many cases the rules against hugging are temporarily suspended. This may give people a little piece of what I experienced in Argentina. Whoa! Can you imagine what the world would be like with so much affection unleashed?

People engaged in self talk would be considered thoughtful and creative. Self talk rooms would be reserved in offices and libraries to encourage this practice.

People with Down syndrome have a reputation for “talking to themselves.” When conducted in a private space, self talk serves many adaptive purposes.

It is a wonderful means to ponder ideas and to think out loud. It allows people to review events that occurred in the course of their day. It allows people to solve problems by talking themselves through tasks. It allows them to plan for future situations. It is also helpful in allowing people to express feelings and frustrations, particularly if they have difficulty expressing their feelings to others. There is even evidence that athletes who do not have Down syndrome use self talk to motivate themselves. Certainly people without Down syndrome talk to their computer (particularly when it crashes), and likewise many people talk out loud when driving in Chicago. (Of course they may also make odd gestures as well; not recommended if long life is one of your ambitions.)

Order and Structure would rule

We have heard that many people with Down syndrome are stubborn and compulsive. Now, I know what many of you are thinking...“Did you really have to bring that up?” I’m sorry, but—we do. What we hear is that quite a few people have nonsensical rituals and routines. They can get stuck on behaviors that can drive family members a little crazy.

Despite the irritations, there are also many benefits to these “obsessive compulsive tendencies.” We actually have termed these tendencies “Grooves” because people tend to follow fairly set patterns, or “grooves,” in their daily activities.

What are the benefits of Grooves? Many people with Down syndrome are very careful with their appearance and grooming, which is especially important since they often stand out because of their physical features. Grooves also increase independence because most people are able to complete home and work tasks reliably when these tasks are part of their daily routine. (And while they are not fast ... they are very precise.) For many with Down syndrome, grooves serve as a way to relax. Some people repeat a favorite activity in a quiet space, such as writing, drawing, puzzles, needlepoint, etc. Grooves also serve as a clear and unambiguous statement of choice (very important for people with language limitations). This may even be a way for teens with Down syndrome to define their own independence without getting into the same rancorous conflicts with parents as many other teens.

So given what we know about people with Down syndrome and grooves, how would they use this to run the world? Here is how:

Schedules and calendars would be followed.

Trains & planes would run on time.

Lunch would be at 12:00. Dinner at 6:00.

Work time would be work time.

Vacation would be vacation.

At the Center, our receptionist, Shirley, will often have people at her desk pointing to the clock or their watches. Obviously, she hears about it when we don’t take people back at their appointment time, but she also found that some people refuse to go back early: “Nope I am not going at 9:45, my appointment is at 10:00,” nor does going over into the lunch period work. I am sure all of you have similar stories.

But there is much, much more:

People would be expected to keep their promises.

Last minute changes would be strongly discouraged (if not considered rude and offensive).

Places would be neat, clean, and organized (not just bedrooms, but cities, countries, the whole world).

Lost and founds would go out of business (even chaotic appearing rooms have their own sense of order).

The “grunge look” would be out, way out.

“Prep” (but not pretentious) would be very big.

In the world of Down Syndrome, there would be a great deal more tolerance for:

Repeating the same phrase or question

Use of the terms “fun” and “cleaning” in the same sentence

Closing doors or cabinets that are left ajar (even in someone else’s house)

Arranging things until they are “Just so.”

Despite their compulsions and grooves, people with Down syndrome rarely have the really ‘bad habits’ that so many of us have. In fact, out of approximately 3000 people we have seen at the clinic, we have not seen any drug addicts or gamblers and just two alcoholics and a very small number of smokers. However, we think that pop may be a common addiction in the world of Down syndrome, and of course some people are incurable savers and hoarders of just about everything, but especially paper products and writing utensils. Because of this, I could see maybe a Betty Ford Center for pop addicts and extreme paper hoarding.

The words “hurry” and “fast” would be not be uttered in polite society. “Plenty of time” would take their place.

At the Center, we frequently hear about pace, or how fast or slow people move. Quite often these issues are discussed in disparaging terms by harried and frustrated family members. In this world, people with Down syndrome have a reputation for having two speeds, slow and slower.

Therefore, in the world of Down Syndrome:

Our current mode of dealing with time, also known as the “Rat race” (or rushing around like our hair is on fire), would not survive.

Here and now would command a great deal more respect than it currently does.

Stopping to smell the roses would not be just a cliché.

Work would be revered, no matter what kind, from doing dishes to rocket science.

We have consistently seen respect and devotion to work by people with Down syndrome. This is such a strong characteristic for many that they don’t want to stay home from work even if feeling ill. Perhaps more importantly, they value any kind of work.

Therefore, if people with Down syndrome ran the world:

Speed would be far less important than doing the job right.

Work would be everyone’s right, not a privilege.

However, we think there would probably be no work conducted during the time that “Wheel of Fortune” is on TV.

All instruction would include pictures to aid visual learners.

Many studies have shown that individuals with Down syndrome have deficits in auditory memory. If they cannot remember verbal instruction, they may be considered oppositional or less competent in school, home, or work environments. Despite this, they have exceptional visual memory-they are visual learners. If they see something once, they can usually repeat it. They also have an exceptional memory for facts and figures of interest (favorite celebrities, movies, music, sports teams, etc).

If people with Down syndrome ran the world:

School and work sites would have picture, written, and verbal instructions to accommodate different learning styles.

Counselors would be able to use visual mediums to help solve problems.

What About News?

If people with Down syndrome ran the world:

Weather would be the only essential news item

News would be more local (“A new McDonalds just opened up,” or “A dance tonight,” etc.). After all, what is more important than that?

What About Bad News?

If people with Down syndrome ran the world, would there be wars or murders? We don’t think so! There may be too many McDonalds but definitely not the wars or murders we have in our “civilized societies.”

What About “Behaviors”...

...and terms such as (the ever popular) “Incident reports,” “Outbursts,” “Unprovoked outbursts” (one of our all time favorites), and of course “Non compliance”?

We believe that in the world of Down Syndrome, anyone writing “incident reports” would have to go through sensitivity training, which would consist of someone following them around writing down everything they did wrong. Brian Chicoine and I both figure that we would have been on major psychotropic medications long ago if we had people writing up incident reports on us.

We have found that most people with Down syndrome are very sensitive to expressions of anger by others. I imagine they would do all they could to help reduce and solve conflicts between people.

Therefore if people with DS ran the world:

Anger would only be allowed in special sound proof rooms.

Trained negotiators would be available to everyone to help deal with any conflicts.

The word “non compliant” would not be used (except as a very rude comment). It would be replaced by “assertive,” as in “he or she is being assertive today.”

What About Self Expression?

Art and music appreciation would be BIG.

People would have time to work on paintings and other art projects.

Acting and theatrical arts would be encouraged for all.


You probably would not hear a great deal about exercise, but you may hear a phrase like, “Dancing tonight ... absolutely.”

The President’s commission on physical fitness would probably recommend dancing at least 3 times per week.

People would be encouraged to get married several times to have more weddings for more music and dancing.

Richard Simmons and John Travolta would be national heroes.


Elvis, The Beatles, and the Beach Boys would still be number 1 on the hit parade (Music of the 60’s, 70’s, and 80’s would be BIG)

Musicals would be very, very, very, big (such as “Grease,” and “The Sound of Music”)

John Travolta would be the biggest star.


Classic TV hits would be very BIG and take up at least half the TV schedules.

“I Love Lucy,” “Happy Days,” “The Three Stooges,” etc. would be very BIG.

Wrestling would be very Big.

“Life Goes On” would also be very Big and replayed regularly.


There would be fewer movies, but they would be replayed over and over.

Movie theaters would allow people to talk out loud to tell what happens next.

No Secret Agents

People would not hurt the feelings of others and they would also not lie or keep secrets.

Therefore there probably would be no secret service agents, spies, or terrorists.

The purpose of this article is to give back some of what we have learned to the families and people with Down syndrome who have come to the Adult Down Syndrome Center and who have been so giving and open with us. If people understand more of the special talents people with Down syndrome have, they may be more able to help them use and develop these talents to improve their lives. We also wanted to reassure families of younger children with Down syndrome who are concerned about their child’s future that there is much to be optimistic about.

Thursday, October 7, 2010

The Down Syndrome Creed- Anonynmous

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains

I was sent here among you
To teach you to love
As God in the heavens
Looks down from above

To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns

That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started

For I'm one of the children
So special and few
That came here to learn
The same lessons as you

That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start

The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

Wednesday, October 6, 2010


Wordless Wednesday

Tuesday, October 5, 2010

Literacy and Down Syndrome

These two manilla envelopes hold a world of possibilities! They teach reading to kids with Down Syndrome, and we all know the importance of being able to read. When I ask for donations to Gigi's Playhouse this is how it is spent. Sturdy, personalized laminated books are made for kids with DS who are learning to read!

A volunteer spends a half-hour with Phoenix every other week teaching him how to read. We also practice at home. (Phoenix's little brother Rio is even getting a head start on reading because he always wants to do the activities with us!) I just leave the envelopes out and Phoenix will climb whatever he has to in order to get his hand on these babies!

This is his family book. This is obviously his favorite book! He loves looking at pictures of himself and his family. It is easy to get him motivated about reading when he and his family are the topic.

It is helping with his spoken language too. Today he said "I see." It was amazing!

Right now he is matching words, so learning by sight. It is working! He knows what the words mean, if I say, "Give me Tiago", for example, he can choose correctly from a large group of words.

This book is about school. He also has books made for him on the topics of sports and food.

Here is a clip about Gigi's Playhouse. At 1:44 you can see a picture of Phoenix from when he was 1 year old posted outside the Playhouse. At 3:16 you can hear more about the literacy program.

SO PLEASE CONSIDER DONATING TO GIGI'S PLAYHOUSE by attending the Gala in February and donating to TEAM PHOENIX for the 5K in June! Or any other time of the year. 2011 calendars are also sale.

There are still kids who want to learn to read but don't have a tutor. Donate your time as a literacy tutor.
Training is provided and sessions run about 1 hour every other week. Email

Thank you for reading this, for supporting our cause and seeing the full potential in people with Down Syndrome.

Monday, October 4, 2010

14 years

Today was our 14th wedding anniversary. We didn't celebrate it though. We are in a deep, dark valley right now. I don't know if it has ever been this bad before.

Did you know that the divorce rates are higher when a couple has a child with special needs? I don't really believe that it has any effect on the marriage more so than any other part of life, and I don't even know how well supported the findings are. Still, I definitely DO NOT want to contribute to that statistic!

So no congratulations this year. Only prayers. Thank you.

Sunday, October 3, 2010

Apple pickin'

  • I clearly remember going apple picking in kindergarden. I was so proud because my mom was a chaperone!!! So I was elated when a friend of ours invited us to meet him and his new wife for a day of apple picking. This should definitely become a family tradition. Since last weekend, we have made apple cinnamon oatmeal, baked two pies and eaten plenty of apples.

  • Here is the pie recipe we've been using. It is super kid-friendly, I think, and very little clean up...and delicious! Our next adventure will be pumpkin picking and, you guessed it, pumpkin pie!

  • 1/2 cup apple juice, orange juice or white wine (seriously delicious!)
  • 1/2 cup white or brown sugar
  • 1/2 cup butter (one stick)
  • 6 Golden Delicious apples - peeled, cored and sliced
  • 1/2 cup white or brown sugar
  • 3-4 tablespoons cornstarch (i doubled the amount and used all-purpose flour as a substitute)
  • 2 (9 inch) unbaked pie crusts
  • *try adding cinnamon, nutmeg, and vanilla if you'd like!

  1. Preheat oven to 350 degrees F (175 degrees C).
  2. Combine juice, 1/2 cup sugar and butter in a sauce pan and heat until melted. Add the apples and cook until fruit is tender.
  3. Combine the other 1/2 cup of sugar with the cornstarch. Stir into the fruit mixture, then cook until thickened. Cool then pour into the pie shell. Cover with the top crust and seal.
  4. Bake at 350 degrees F (175 degrees C) until golden brown.

Saturday, October 2, 2010

At Old Navy

Something about hats just makes them dance!

Mirrors too!

Next time we don't have anything to do I'm taking the kids to Old Navy. Wow, they had so much fun! And did you know that they have interactive displays there??? (Well, my kids make everything interactive, even a few preppy dressed manikins and their dog!) Poor Tiago did not join in the fun. He was strapped in the stroller!

Friday, October 1, 2010


Two Perfect Little Angels!

We Can Do No Harm!

The Reality- Double Trouble!

Off topic- This is what Phoenix had gotten out of the fridge and planned to have for breakfast!

I found out what a CODE YELLOW was last week. I took the three boys to Target. I figured we had a large gap of time and I had very few items to purchase so I figured this would be a successful trip despite being outnumbered 3 to 1! Phoenix and Rio were very excited about the seating arrangement of the cart (they could sit next to each other) and Tiago was just as excited about sitting in the basket part! There was one problem, the straps kept coming undone so Phoenix and Rio were got loose! They were actually very well behaved. I was impressed. When they strayed too far from me they came back and had fun playing and laughing amongst the clothes rack. And then suddenly Phoenix was gone!!!!!!!!!!!!!!!

Rio and I thought we heard his "Dah, dah, dah" but we couldn't find him. I found a sales associate and they radioed over the walkie talkies "Code Yellow", which means they lock all the doors (so that no one leaves with your child) and do a sweep of the store aisle-by-aisle. The lock down part helped me not freak out. They didn't find him right away, but eventually he was found 2 feet away from where I had been standing looking at the clearance rack. He was hiding between the boxes of car seats!!!

Even crazier was that as soon as he was found, RIO TOOK OFF! And they had to call out another "Code Yellow". Now I was completely embarrassed of the behavior of my kids. Luckily, we found him almost right away. What was he doing? Hiding. WOW! I'm amazed at how quickly Rio made the connection "I hide. I get attention."

From now on, before we enter the store, two rules are reviewed.
1- Stay close to Mama and/or Papa.
2- No hiding!