Still in need of a Landlord!

Just thought I would update you all as to our housing situation.

I am frantically trying to find properties to inspect that may (or may not) suit LJs needs.

I have a few inspections lined up around Wollongong of properties that have been listed on the popular dot com sites, but of course, at this time of year, competition will probably be fierce with the University population in turnover mode.

I have had a bit of feedback from my first Community Call Out post, you remember? This One

ABC TV/Radio have interviewed me, but the TV version of that interview will not air until a bit later this week.  I have had reports of people hearing me on radio, so hopefully, a Landlord may hear me too.

In the meantime, I ask again, if you know anyone who has an investment property or a few, in the area, or you know someone who knows someone, PLEASE, PLEASE, PLEASE ... put them in touch with me.

Thank you all once again, my wonderful online community!

Source

Happy Ending here will be my boys and I are settled in and able to put up a humble Christmas tree in time for Christmas Day in our new home.

Take advantage of every opportunity to practice your communication skills so that when important occasions arise, you will have the gift, the style, the sharpness, the clarity, and the emotions to affect other people.

Jim Rohn

Landlord Community Call Out

When I started blogging, I had in mind many reason for doing it, none of which included asking for help from my online community.

Yes, I have asked for help in regard to signing petitions, one of which is Chloe's Law an Anti-Bullying Petition being sent to the Australian Senate.  This is something that is very close to my heart.  If you have not signed it I suggest you do that NOW and come back to finish reading this post. I'll wait ...

Image Source Chloe's Law Facebook Page

Nice to see you back.

And I also tried to bring to your attention the plight of an Australian family in Adelaide who had fallen upon tough times as a result of the Dad having suffered a stroke at a very young age. I will provide a link at the end because when you go and like their page on Facebook and see what they have done, you will probably stay there for a while getting familiar with their story and all the good they have since done, and hopefully get involved yourself if you can.  Out of  diversity, they have created something beautiful. It's called the Foxy Foundation.  Go check it out, but do that one later via the link supplied at the end of this post.

So, "Landlord Community Call Out", you are probably wondering what I can do for any Landlords.

Well, here is what I can do ... I can supply them with a reliable and financially reliable, honest, self sufficient, respectable, long term tenant, who will fill their home with love, respect and gratitude. Add to that my charm and wit ... what more could a Landlord want?

All jokes aside, I am a good tenant and I am looking for a long term tenancy for myself and my children. We have had so much upheaval and it is making life very difficult for us particularly around managing anxiety levels for us all, but particularly, LJ.

You may have read my previous posts about our situation, but to shorten all that for you, this is where we are at now. Due to major maintenance issues required in the property we are in (that existed when we moved in), the Landlord has requested "Vacant Possession"of the property to undertake those repairs. The Landlord requires that by 17th January 2014 and as of yesterday was not willing to negotiate on this matter.

Therefore, our situation is becoming URGENT, particularly since over Christmas, the Real Estate Industry all but shuts down and our required date to vacate is about the time they return to work. In real terms, I have about 4 weeks to find another property, hence my decision to blog about it!

I am a tenant who is registered on the Pathways Housing Register, which means Housing NSW and any other Community Housing Organisation are able to provide me with a service that will assist me to find a "suitable" property.

Herein lies the problem. The word "suitable". As you may or may not be aware, my son LJ, who is 11 years old, has Down syndrome.  For any parent reading this who has a child with a disability, you will understand disability impacts every person differently. So even if you have an idea of what Down syndrome actually is, unless you have close and constant contact or interactions with a person with Down syndrome you cannot understand how it impacts their life, or the lives of their families and carers. Let's just say, it adds a whole other dimension (or two). And, even if you have a person in your life who has Down syndrome, they are not MY person who has Down syndrome. Documented evidence of the details of LJ's disability and the implications formed part of our original application to Housing NSW.

Our kids are individuals, as are all kids, all people!

Unfortunately, the person who decides what a suitable property for us is, is not us. And, the person assessing a property that is "suitable" is a person who has never met or known LJ and therefore is unable to look at a property and assess it's suitability with regard to safety and security because they have no knowledge of LJ's ability when it comes to escapism or general seeking out things he should not be touching or playing with because of a level of danger. Another policy that applies to all agencies who could help us is that we are only entitled to two offers of properties and if I deem a property NOT to be suitable, there is a 28 day appeals process that I have to go through to be entitled to have that offer opportunity reinstated so another offer can be made.

Now, I know most parents are thinking, sounds just like my 11 year old ... this is where I might need to link in my previous post which talks more specifically about LJs disability.  Here is the link.  A quick overview though, LJ has an intellectual delay, receptive communication lack, delayed processing time, no idea of stranger danger, no concept of imminent danger to himself or others, the cognitive ability of a 4 - 6 year old in some things and the physical strength and ability and agility of an 11 year old. In short, exhausting. It breaks my heart every time I have to make a list of all the challenging attributes of my beautiful little boy, because he really is that, my beautiful little boy.

LJ is also a gorgeous, empathic, lovable, kind, energetic, funny and absolutely adorable child. He loves dance, sport, "shooting hoops", riding his scooter, playing with friends, watching DVDs, going to the beach, ten pin bowling and all the typical things kids love to do. He is a real social butterfly and because his favourite food of all time is ice cream, he has the energy to be one ALLLL day! LOL

Here is what I need you to do.

Share this post with ANYONE you think may know someone or who is someone or who has contacts and networks or who is in the media or who in any way whatsoever would be able to help me find this:

I need a three bedroom home in the North "ish" Wollongong area. I can consider anywhere from Figtree up as there is transport, buses are available from those areas.  We are currently in Fairy Meadow and the boys both are in Schools nearby. The property needs to have a securely fenced (level as possible) back yard, with minimal debris or obstacles, completely enclosed and preferably fences in excess of five foot with minimum foot holds. We obviously need all the other amenities such as a kitchen, lounge room, bathroom and toilet. An indoor play area would be a huge bonus.

LJ needs to have a backyard to blow off steam, he is a very energetic child and as I am a single Mum, I am not always able to supervise him in the yard, hence the need for such high levels of security and safety. To be able to see the yard from within the home would also be a huge bonus.

So go forth and spread the word.

I can be contacted at slynn0601@gmail.com, I am on Twitter s_lynn4 or you can leave a comment at the end of this post!

PLEASE, PLEASE, PLEASE, SPREAD THE WORD!!!

I think you all know what my idea of a Happy Ending Would be in this situation, so let's get on with making it happen!

Thank you all, my wonderful online community!

Here is the link for the Foxy Foundation that I promised!

Raising Awareness Is NOT Enough!

I need to point out that this post was written quite some time ago and has been sitting as a draft, which I have now finally finished. And here it is.

After briefly hearing Ita Buttrose speak on TV about Dementia and Dementia Awareness in her role as Alzheimer Australia's National President, I found what she was saying to be very familiar.

Ita was talking about raising awareness and was responding to a question of funding.  The question was about where do we get the money? A good question.

Ita is an extremely intelligent and thoughtful woman and I have a great deal of respect for her and the way she has lived her life so I was not at all surprised to find her response to be something along these lines ... (not in quotations or italics because this is from my memory - not her words at all).

No we can't go asking the Government for money for everything, there is only so much money available in the pot. This needs to be a community initiative. The whole idea of awareness is to involve the community who at large are the ones we are asking to support our people with Dementia. (End of my recollection of Ita's words)

Source

Awareness is awareness.  It doesn't matter if you are talking about Dementia, Autism, Variable Religious Beliefs, Down syndrome, Gay, Lesbian, Bisexual, Transgender, Intersex, Muscular Dystrophy, Heart Attacks, Depression, Diabetes any difference.

That is all it is about. People's differences. When we have differences, our needs are different, when it comes to interacting within a community, that can mean we need to do it differently. Or is it that other people need to interact with us differently?

When I interact within my community, I communicate by voice, I speak. I also listen. There are days that I can go about my whole day without having to speak except to say thank you as I pass through a check out.

On the odd occasion I find myself having to ask a question about a product or a location and because I can speak and hear, that is easy for me to do, given the people I am approaching can also speak and hear.

What if I could not speak?

Think of your day just going about your grocery shopping, getting petrol, paying bills, making phone calls, going to collect kids from school and taking them to their after school activities.

How different would that be, if you could not speak?

How would you cope?

Source

Yes, I know you could write down what you wanted to say, but what if the person you were trying to communicate with, couldn't read?

Yes, I know, there are all sorts of augmentative communication methods available now, but what if you approached someone that did not recognise the device you were using and just thought you were trying to sell something, therefore not giving you the time of day? Or, they just didn't have the time to deal with that difference in the way you need to communicate in that moment?

What if your speech was not very clear and you had an intellectual delay and you asked a stranger for assistance?

What if you were deaf and your speech was not clear and you had an intellectual delay and you needed to ask a stranger for help?

What if you were in a wheel chair and you had no intellectual delay, but your speech was very slurred and you were difficult to understand and you had to ask a stranger for help?

What ... If you were having a Heart Attack and you looked like a drunk stumbling around, bodily functions out of control and you could not speak because you were unable to draw a breath? Do you think anyone would stop?

What if you were dizzy and losing consciousness because your sugar levels were way out and all you needed to do was let one person know what was happening to you before you blacked out completely? How many people would listen?

What if you simply looked different? You had a scar on your face, you wear very strong thick eye glasses, you looked unlike a man or a woman, you were very tall or very short, your levels of hygiene might not be up to that which is considered "normal"? Would anyone say hello or smile at you?

What if you needed a safe place to sit for a moment because you were being bullied and/or harassed and you were feeling unsafe or unsure just because you were different? How many people would sit with you?

What if you were lost and completely disoriented because you were out of your normal comfort zone and your ability to work outside of a routine or familiar sequence was limited or you were feeling anxious? How many people would know how to help you?

The reason I ask is this ... I can't get people to smile back at me on the street most of the time, much less have them converse with me and I don't want anything from them, just a simple exchange of pleasantries!

The reason we ask for awareness is so that our people with a difference can be supported within the community which they have a legal right to be a part of for as long as they choose to. The sad part is, that legislating for these things cannot change people's attitudes, neither can funding to "Make People Aware". People only want to learn that which is of interest to them and relevant to their own lives!

Integration, support, inclusion ... these all need community INVOLVEMENT AND PARTICIPATION, not simply awareness. 

Awareness is surely a part of it, if we know the needs of others, we can be prepared, but the issue is really, finding the people who want to be inclusive, supportive and active in the integration process.

Unless you know someone who is what society considers to be different, then you have no need or inclination to be active in this support process and making it law does nothing to inspire people to want to be involved.

Anti Discrimination laws have been helpful in litigating after the fact, but the real fact is, discrimination is still alive and well. If it weren't, we wouldn't need the laws!

It should not come down to legal rights, or funding, it is about HUMAN RIGHTS.

Source

Every individual person, no matter how you interpret them, or misunderstand them, or even if you are completely ignorant of their difference, still has a right to choose to be a part of a community.

The reason we find it so difficult to make this happen however, is because there are so many differences.

For most people is it hard enough to live with their own differences.  For some, their differences don't limit them physically or intellectually. Often their limitations are external to them in the form of bigotry from others,  but for many, the physical and mental stresses of surviving with their differences makes it difficult to be a part of a community that does not support their differences.

We hear the cries of ... But we have disabled parking spots! We have special seating at entertainment venues and there are ramps everywhere now! Even those "travelator" things are replacing escalators everywhere!

And, don't get me wrong, that's great! And that covers the mobility needs of the people who need wheelchairs. Whoopee!

That is one group of people who seek inclusive support, it is actually a token attempt at inclusion.

And how is it inclusive if a person in a wheel chair has to sit in the specially allocated spots for wheelchairs with all the other people in wheelchairs and can't sit with the friend they came to the concert with?  THAT is actually segregation!

Like Ita Butttrose, I ask for Community Interest, Community Action and most of all, Community Inclusion.  If that means Educating people and raising Awareness, then so be it.

But who will commit, which one of you would be capable, understanding, time rich enough to take the time out of your own day to stop and redirect your thoughts, your habits, your instincts, your schedule to actually physically include someone who has a difference?

Who will be that community?

"Inclusion is not a strategy to help people fit into the systems and structures which exist in our societies;
 it is about transforming those systems and structures to make it better for everyone.


Inclusion is about creating a better world for everyone."

Diane Richler, President, Inclusion International

And even as I hit "publish" I realised this post does not include all areas that require inclusion.
We are such a diverse world, and ALL people deserve equality and access.

My Beautiful Son

Tonight I sat down to write an open letter to the community of my son's school. I then saw on Twitter a movement to raise awareness about Down syndrome.  So I thought I would share the letter with you all. 

My son LJ, who has Down syndrome, is my youngest and one of the two who have taught me so many things in their own ways. 

I do NOT believe that "special children are born to special people" nor do I subscribe to any of those cliché statements that people make to parents of children with special needs.

In my opinion, those words would be best replaced with action, in the form of inclusion and equality.

This is what the letter looks like:

Open letter and Fact Sheet about L J and Down syndrome

Thank you to all the families at School who read the fact sheet that was sent home in March. The 21^st of March is International Down syndrome Awareness Day, raising awareness however, is a full time job.

As L J’s Mum I hope you don’t mind if I share with you some of our personal favourites or some of L J's personal characteristics in the hope that you, your children and the greater community will come to understand L J more and other people who live with Down syndrome. L J, as you may know, attends this school and is in 4th class, Miss P’s class, he also attends the dance class.

If there is ever anything you would like to ask, I invite you to approach me anytime, introduce yourself and get to know us as I am happy to answer any questions you may have. My name is Sandra.

¨                L J copies behaviours – Good or Bad. This can be a great way to teach him new skills both social and academic.  Unfortunately, it can also be a way for him to learn inappropriate social skills and behaviours from other people.
¨                L J learns visually, which is why there are so many picture instructions in the classroom and why many Teachers and SLSOs wear lanyards with pictures around their necks to help instruct L J and other visual learners.
¨                L J likes to pretend and often uses this as a means of communication by acting out things that have happened when he cannot find the words to express himself, or to explain something he is trying to say.
¨                L J loves to dance, which I think is apparent when you see him perform on stage at Assembly.
¨                L J also likes to play soccer, basketball, hand ball and chasing.  L J likes to play with other kids in all types of games.  Sometimes he does not understand the rules and this is when supervision and instruction is needed to help him integrate.
¨                L J likes to be helpful, picking up rubbish, shutting doors, putting dishes in the sink, sometimes before we are even finished eating! LOL
¨                People with Down syndrome are supported academically with different learning styles and adjustments to the curriculum.  Often this type of adjustment is required to integrate children and people with Down syndrome in sporting activities and work placements also and in general play with various groups of children.
¨                Down syndrome is the name of the diagnosis given when an individual is born with three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. The characteristics of Down syndrome are different in each person despite similarities.
¨                Down syndrome is the most common chromosome disorder that we know of. One of every 700-900 babies born worldwide will have Down syndrome. This number has not changed a lot throughout the entire time that statistics have been collected.
Down syndrome is not a new condition. People with Down syndrome have been recorded throughout history.
¨                There are estimated currently to be in excess of 22,000 people living with Down syndrome across Australia.
¨                Down syndrome occurs in people of all races and economic levels.
¨                The possibility of the birth of a child with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are actually born to women under 35 years of age.
¨                People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood Leukaemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
¨                People with Down syndrome attend school, have jobs; participate in decisions that affect them and their future plans while also contributing to society in many positive and meaningful ways.
¨                All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
¨                Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

How often do you need to write to the school your child attends to "explain him" to them?

My Happy Ending is TRUE inclusion and equality for ALL.

My Beautiful Son LJ

While I usually try to stay away from the stereotypes normally associated with Down syndrome, it is reasonable to say those stereotypes have come about as a result of the syndrome itself.

Syndrome as defined in Wikipedia: In medicine and psychology, a syndrome is the association of several clinically recognizable features, signs (observed by someone other than the patient), symptoms (reported by the patient), phenomena or characteristics that often occur together, so that the presence of one or more features alerts the healthcare provider to the possible presence of the others.

We often talk about the Down syndrome phenotype, see this excerpt for a short explanation:

In genetics, a "phenotype" refers to a category or group that can be assigned to an individual on the basis of features or characteristics that reflect that individual's genetic make-up. For instance, a phenotype may describe something as simple as eye color or as complex as a behavior pattern. The purpose of the above paper (link below) was to answer the often asked question: "Does the presence of the third 21st chromosome give people with Down syndrome a specific behavior or personality pattern?" (How many times have you parents heard the "sweet and loving disposition" remark?) For Full article see here.

Image of Chromosome pattern depicting Trisomy 21 (Down syndrome)

So it is certainly fair to say, some people with Down syndrome will display some of the characteristics, but not all of them and each person will display different combinations specific to their own character, interests, nature or environment.

Having said all that, WITHOUT FURTHER ADO, I introduce to you Dennis McGuire, PhD who wrote the piece I am showcasing here today ... "If People with Down Syndrome Ruled the World".

This article gives a wonderful overview of some of the more common assets that people who have Down syndrome may or may not have and it is presented with such respect, admiration, humour and good intent, it is a must for every person to read. Read it all, you will be glad you did!

You will learn something AND you will get a giggle. Original source for this article is here.

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.

Dancing

• 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.

Music

• 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.

Television

• 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.

Movies

• 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.

My Happy Ending: The broader community will begin to understand and enjoy the wonderful people we have in our communities and enthusiatically include them in their lives.

The quote below comes from here, and while I cannot find the name of the person who said this, they are a person who has Down syndrome.

"The doctor who discovered Down Syndrome many years ago was Dr. John Langdon Down. I really wish that his name was Dr. Up so that today, Down Syndrome could be called "UP" Syndrome instead. Then maybe people would begin with a better attitude towards us as they start to understand what we are all about and what we are really capable of doing."