Friday, November 27, 2009

What would happen if people with DS ruled the world?

i love this article by Dennis McGuire. it just tickled me from the inside out. i truly believe that this world would be a better place if there were more people with down syndrome in it.

this thanksgiving we celebrated with friends and family. i kept thinking how grateful i was to have our little maya. my life is so much richer because she is in it.

if people with down syndrome ruled the world.

Dennis McGuire, PhD
Adult Down Syndrome Center of
Lutheran General Hospital
Park Ridge, Illinois

This paper was originally delivered as a plenary address at the conference in Chicago in July of 2005, co-sponsored by the National Down Syndrome Society and the National Association for Down Syndrome. It was well received by the audience, and we have received many requests for a written form of the presentation. In this paper I will try to maintain the spirit and humor of the original.

If I am going to describe what it would be like if people with Down syndrome ruled the world, it may be helpful to explain how I came by this information. I am the Director of Psychosocial services at the Adult Down Syndrome Center in Park Ridge, Illinois, a unique partnership between the National Association for Down Syndrome (NADS), Advocate Medical Group, and Advocate Lutheran General Hospital. Our multidisciplinary team has served the health and psychosocial needs of over 3000 teens and adults with Down syndrome since we started in January of 1992. Our patients have let us into their world, and what a rich and interesting world it is.

Development of the Adult Down Syndrome Center

Before beginning, let me provide a little history. NADS, as the oldest Down syndrome parent organization in the country, had many members who had teen and adult age children. These families found there were few health or social services available to them. Sheila Hebein, Executive Director of NADS, was determined to develop resources for these individuals and their families. She recruited the Center’s Medical Director, Dr. Brian Chicoine, and myself to help develop and then run the Center, and we continue to have a very close working relationship with NADS.

Why us? Brian had some experience in his medical practice with persons with disabilities, but he also did not have a great deal of contact with people with Down syndrome. One could say I also had led a sheltered life. Sheila’s son, Chris, was probably the first person with Down syndrome I had ever met. Still, Sheila seemed to know this would work. The good thing about our lack of experience was that we were able to listen to the families and the people with Down syndrome without any preconceived ideas, assumptions, or biases.

We learned quickly that the families are the experts with regard to their sons and daughters-because they had to be. We view the information we have gathered from families as a repository of their wisdom. We hope this paper will be helpful to families who are searching for ways to improve the lives of their sons and daughters.

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.

Saturday, November 21, 2009

a cure for what?

thanks to rebecca at the bates motel for writing about an article posted by the l.a. times. i think rebecca did a wonderful job at conveying her thoughts on the article. she is a much better writer than me for sure!

what is interesting is that i have been thinking lately that i would never for a minute change that maya has down syndrome. in fact i wish there were more people in the world that had down syndrome. personally i think the world would be a better place. i don't see down syndrome as a disease or even a disorder. i don't think we need a cure for down syndrome we need a cure for heart disease, thyroid issues, dementia. but most importantly i think that our society needs to be cured of how we see people who have down syndrome.

even before maya was born i always accepted people with disabilities. of course now that i have maya my feelings have grown stronger. i can't help but see how maya brings life to our mundane world. almost everything she does is a gift...from rolling over, to crawling, signing and sipping from a straw, the list could go on. we work hard for all these milestones and i am grateful for all that she accomplishes. i don't know what it would be like to have her without down syndrome. i wouldn't even want to imagine. she is perfect just the way she is.

Friday, November 20, 2009

naps, bedtime and sleep

this whole week our major new accomplishment has revolved around sleep. as i previously wrote, i have recently given up breastfeeding. in turn our sleeping routine has changed in ways i never dreamed possible.

our night time routine has always been a struggle. between teething and breastfeeding, it's just been hard. i've tried several times to sleep train maya, but most of the time something changes in our schedule and we get off track. it could be traveling out of town or her being too cold in her room, etc. either way she and i have had this off and on battle in getting to sleep without my nursing her. since she has pretty much decided she didn't want to breastfeed anymore, i've had no choice but to be firm with her nap and night routine.

this week what became a new tool for getting her to sleep was integrating a new toothbrush and taking her to the potty right before sleeping. it seems strange but her making her own choices seems to help. she brushes her teeth, with my help, and then i wait for her to ask to go potty. i tell her, "ok, let's go potty and then we go to sleep" (i say this a few times before we get to the potty). once she is on the potty i let her choose what book she would like to read and after see is done (most of the time she actually goes potty), i take her to the bedroom and tell her it's time to go to sleep.

she doesn't like to be rocked in a chair, or cuddled, so she doesn't stay long in my arms most of the time. this last week i have followed this routine to the t. now when i put her down in the crib she lays there most of the time, without crying or growling and then she falls asleep (knock on wood). oh my, what a beautiful thing that is! the silence is blissful!

naps, well that's another story, but we are getting there. she does cry more with naps, but with the same routine being used i'm sure see will get it very soon. and on a side note, i have noticed that she is sleeping through the night more often and her naps are longer.

i was very sad initially about not nursing but now i see that there are advantages! the fact that she can sleep without much fighting is so wonderful.

Wednesday, November 18, 2009

inspiring graduate from spain

thanks to penny a new friend via facebook who found this article and shared it with all of us. it's about a man who is the first person in Spain to obtain a college degree. i really enjoyed this article. when i read about all the great things that people are doing in this world it just gives me so much hope for maya. i don't want to speculate to much on what maya might do when she grows up, but i hope to encourage her to follow her dreams. not because she is "special" but because that is something i promised myself that i would do for my child. i truly believe having your parents support and encouragement is essential to being successful.

Actor, graduate, charmer... Down's man now in search of love

Pablo Pineda: "I am not a child. We are not children." Photo: Jason Borg.

Surrounded by a group of eager listeners, Pablo Pineda, a charismatic teaching expert and up-and-coming actor, argues that the educational system around the world needs to change.

The 35-year-old Spaniard is unique because his insights into child psychology and pedagogy are different, imaginative and thought-provoking.

Mr Pineda is the first person with Down's Syndrome to obtain a major degree from a university in Spain. He is now pushing the envelope even further by reading educational psychology, his second degree.

He was recently in Malta for a seminar on inclusive education for Down's children, organised by Inspire, through which he hopes to inspire parents and teachers to open doors for such children rather than give up on them.

Mr Pineda made international headlines last September when he bagged the Silver Shell award at the 2009 San Sebastián International Film Festival for his performance in Yo Tambien (Me Too) - a film inspired by his life.

In the film, Mr Pineda plays a 34-year-old with Down Syndrome, who graduates from university and falls in love with his work colleague.

In real life, love has eluded Mr Pineda - so far. He feels this is the one major hurdle he has not yet managed to overcome, but he knows it is something he must manage on his own. "Everyone has a right to love and be loved. The one thing I am really scared of is solitude," he says.

Within a couple of days of being in Malta, Mr Pineda had already learnt a few Maltese words. When he was asked to be ushered into another room for the interview, he responded with "nistgħu" (we can).

He says his aim is to show society that Down's children can set goals and reach the targets that everyone else aspires to if they are given the same opportunities.

His parents were incredibly supportive and never treated him differently to his older brothers, except that they kept pushing him to expand his horizons and never give up.

"I am not a child. We are not children," he says, holding his spectacles in his hand like an intellectual.

But then he cracks a joke, his face creases into a beaming smile and everyone around him laughs on.

Although he agrees he is gifted in some ways, he is convinced that if people are rewarded and encouraged they will always be able to do special things in life.

"Sometimes when I meet parents they tell me they want their children to be like me, but I always tell them that everyone is an individual. I don't think they should raise their expectations too high, but they should never limit or confine their children's potential."

Mr Pineda has lived all his life with 'normal' children and he therefore finds it difficult to understand why girls look at him differently.

"It's very complicated. I feel like I am in the middle of two realities," he says, adding that his film manages to capture many of the inner-most feelings that he has always found difficult to express.

However, he feels that the beauty of diversity and human nature is that everyone has some form of disability or challenge in life, and everyone can learn from each other.

"The educational system is based on a wrong premise. There should not be a partition between people who are 'disabled' and people who are 'normal'.

"Some teachers have a tendency to put people with disabilities in a box and use the same model for all, ignoring the fact that everyone has different capabilities."

He adds that education is "too intellectual", using too many books and rules instead of focusing on creativity and imagination.

"Any professional who tells a parent that their Down's Syndrome child will only reach a certain mental age, is making the biggest mistake of their lives. No one ever stops learning. It's a lie," he says.

He advises parents to listen first and foremost to their intuition, and to learn from mistakes, which they will inevitably make. He says Down's children should make an effort to learn everything they can, understand their condition and overcome it.

Mr Pineda thinks people should stop seeing someone like him as having some sort of "deficit" and instead adopt an attitude that focuses on "ability".

The young man's abilities are well amplified in the film currently being shown in Spain. It will eventually premiere around the world.

Friday, November 13, 2009

nursing ends at 20 months...

it's so amazing that 20 months has passed to quickly. well at times i didn't feel that way. the lack of sleep definitely has made it feel long, but otherwise than that it sure doesn't feel like my little baby is fast approaching her 2 year mark.

today when my husband reminded me in the morning that it was maya's "birthday" i started to think about all her latest accomplishments. what stood out for me, what shows me that my little baby is growing up is the fact that she has decided to wean herself from nursing. i don't think it's ironic at all that this last week has been a turning point for maya and i. last weekend she started to bite me while nursing. at first i thought maybe it was just a phase, she has done that before (she only had one tooth at the time). as feedings went on i started to think that she was trying to tell me something. when she didn't ask for "my" milk anymore at bedtime, i became certain that she was ready to move on. call it mother's intuition but the fact that she didn't seem to miss my nursing her, seemed like a sign.

i can't say that i am very happy about this new development. in some ways i can't believe that i've made it this far. i remember that i used to tell my friends, "i'll take it month by month and see how far i get." if i dig deep though, i have to admit that once i found out that maya had down syndrome i became adamant about breastfeeding her. i know that mother's milk carries with it many nutrients that you can't find in formula. the idea that i could give her something that would boost her immune system seemed like a precious gift. i wanted to give maya a fighting chance at being healthy, knowing that children with down syndrome often have ear, nose and throat issues.

when maya was born she was in the nic unit for 13 days. i have to tell you it was very difficult to breastfeed while she was there. she was having trouble feeding from a bottle and wasn't gaining weight. it just seemed so exhausting for her. often she would give up quite quickly. for those 13 days i pumped and delivered my milk to be added to the formula she drank. when she came home i tried only after several weeks, to breastfeed her directly. it took some time to get the hang of it. she latched on pretty well but she didn't stay on for very long. over the weeks she built up her stamina and the rest is history.

so here we are at 20 months. i know i should feel grateful that we made it this far. but still i feel sad. i worry that winter is coming and with the H1N1 looming over our heads, well it concerns me not to have that extra protection. i have been trying to pump my milk and add it to her whole milk, but i can tell that my body is shutting down. nature has taken it's course and i guess it's time this part of our lives comes to a close. i feel very lucky to have been able to nurse her until now. it has been an eye opening experience to say the least and i'm blessed to have had this special time with her.

Thursday, November 12, 2009

inclusion victory

someone posted this through twitter, thought it was a really neat story.

Thursday, November 5, 2009

November is here!

someone asked if i will continue blogging as much as i did in october. well i guess the answer came the moment it turned november 1st and i skipped town. hehehe. all kidding aside, i would love to continue writing as i did last month but it was really a huge undertaking. i'm not quite sure i could keep it up with that intensity for more than a month. what's my latest excuse, well quite honestly i am exhausted.

this last week has been a wash for me. i haven't been able to get things done and prepare for my mother and my in-laws arrival, as i had wanted. husband fell ill with a cold and i'm feeling a bit poorly myself. thankfully maya has not been affected.

so for the last several days i have been taking care of maya 100% of the time (no therapies or respite). this would include bath and reading time in the evening otherwise reserved for her dada. the irony of the whole thing is that i don't mind that part of the day with her. she loves to take a bath and once the wrestling is over in putting her pajamas on, story time can be very calming and sweet. usually i'm just so exhausted by the end of the evening that i don't quite feel i can give her a 100%.

but all in all i think this week has gone well. there are so many stories i'd like to tell you, like the fact that maya has used a straw exclusively this week for drinking milk and that she and i have learned a few new signs this week just by singing her favorite songs, but i need to take care of myself and get some rest. so, i leave you with a couple of stories that a friend (i recently befriended via facebook) posted. i love seeing such positive stories in the news. i felt very hopeful when i read them. hope you enjoy them as well.