Amazing little girl

O had her surgery on the 16th and she is just amazing. The surgery started around 9:45 and she was out by 10:45 and back to her room by 1. She came out of the surgery like a trooper and was home after 24 hours. And within 48 hours was back to crawling, cruising, climbing all over everything, and into everything. Every once in a while you can tell that she overdid it and it hurt, but she just keeps at it. It just amazes me what an incredibly strong and tough girl she is. You can never count her down and out because she will amaze you!!!

Slacker

After a month of posts every day, I needed some time off. I had no idea the time would fly by so fast! It has been over a month since my last post, how did that happen?
Anyway, the newest thing here is going to be a huge shock, one of my kids has a rare condition! Go figure! O has been sick with a head cold for a while but it finally migrated to her chest, as it always does. Got her into the Dr right away and she was diagnosed with bronchitis and put on antibiotics and breathing treatments. After 5 days of antibiotics, she wasnt getting better so we took her back to the Dr. Sunday morning at our pediatrician's after hours office we met with a wonderful Dr. He sent her over to the ER to get some x-rays of her chest to see if it had progressed to pneumonia. After a while we got the results that it was in fact pneumonia. So you are probably thinking "um, rare condition my arse" but I assure you I haven't gotten to that yet.
After telling us that she has pneumonia, the Dr. says that they found something else on the x-ray. A hernia in the diapraghm, a very rare type of one to be exact (now you can stop being disappointed) called a Morgagni Diaphramatic Hernia. O will be the 19th case in the world of a child with Ds having this condition. She has had it since birth and somehow within the last 16 months no one has caught it but it needs to be surgically corrected as soon as the pneumonia is gone. Basically there is a big hole in her diaphraghm and part of her intestines are in her chest cavity instead of abdomen. The Dr. thinks this could be what has been causing all of her respritory problems.
So, we, or I should say I, proceeded to freak out. The thought of my tiny little girl needing surgery is enough to break my heart and force me to the verge of a nervous breakdown. Thinking about a Dr. cutting her open and playing around inside her near her lungs, vital arteries, stomach, etc. is scary.
But, we met with the Dr. yesterday and since then I have calmed down a bit. He seems extremely knowledgeable and confident that he can fix it without any long term issues. They can do the surgery at the hospital that is almost across the street from our house. That was an even bigger relief!
All in all I am beyond freaked out by the thought of my baby girl having surgery, but I know that she will be in capable hands and we have so many wonderful friends and family praying for her. The surgery is going to be on the 16th as long as the pneumonia is cleared up by then. And by the looks of her the last few days since being on the stronger antibiotic, I think she will be fine by Friday.
So, if you have a moment, please pray for our little girl for a safe surgery and speedy recovery.

I'm in love

I just L-O-V-E the girls' new daycare. It is the greatest place on Earth. It makes coming to work so much easier knowing they are both there and being taken care of. O has been there for 3 months but E just started this week. I was so excited for E to start, but I had no idea how wonderful it would be.
They go with her to the bathroom to make sure she is wiped well, they don't give her 5 options for lunch - she eats what they give her or she doesn't eat, they don't put up with her demanding and give in to every little whimper, and they work with her on things like tracing letters and knowing numbers and letters. NONE of this stuff was done at her previous daycare. The more and more I think about it, I feel like a horrible mother for having her at the other place for so long. Although it was only the last 6 months or so that were really bad there, the other 2 years were good.
I can't even explain how excited I am to have the daycare on the same page as we are. It was so hard to parent E when everything we did was contradicted all day at day care. We don't cater to her for meals, we don't put up with whining or demanding, and we use the same discipline strategies as the daycare. It is WONDERFUL!!!!!
Now the cost on the other hand is something we need to get used to, but it is worth more than money can buy to know the girls are in a much better place! YIPPEE!!!!

More Ds Facts

The things that no scientist, doctor, or therapsit can tell you about Down syndrome and what it is like to be the parent of a child with Ds.

Here are some quotes I have taken from parents, how they describe their child with Ds. As you are reading these, you may realize that a lot of these comments can be true for any child, but some are quite unique. Just like every child in this world is unique, so are those children with Ds. They are more alike than they are different. I have removed all names to keep the children's and parent's identities confidental.

“She knows no limitations. She strives to be independent and just one of the crowd, and is probably one of the funniest kids I know!”

“He is a snuggler. He loves a nice soft blanket, the couch and his Mommy or Daddy. I hope he never outgrows this trait.”

“He has an amazing sense of humor. He knows when something is funny…and he also knows how to be funny. He has a silly, funny, outgoing personality.”

“He is very empathic. He knows when someone needs a hug or kiss.”

“She gives the best HUGS! Claps her hands together and says "Mommy, I want a hug!”

“She loves to be tickled and has the most contagious laugh!”

“We wouldn't trade her for anything in the world! We are amazed by what she can do!”

“He doesn't like keeping his shoes on, and once they're off, the socks are coming off next”

“She is nicknamed “the mayor” at daycare. It takes us forever to get out of there in the evening. We have to stop and say bye-bye to everyone we see.”

“She has a smile that lights up a room and makes my heart smile.”

“He was a "surprise", but a very welcome one! I can't imagine loving anyone more. I'm always amazed by how much the other kids love him and want to play or help with him. He's so sweet and such a happy little guy.”

“She is my perfect gift from god and I wouldnt change one thing about her or anything that we have been through. It made us all so much stronger just by watching her grow, learn, and fight each battle! She is a fighter and we believe she will make a huge mark in this world!”

“He loves to play the drums. A few months ago, he discovered that his drumsticks make a wonderfully loud sound on the large air conditioner vent in the kitchen. So, he often carries his sticks, while crawling, to bang on it.”

“He amazes us everyday. We are enjoying the way he seems to be coming out of his shell and showing us more and more of his personality.”

“She has brought so much joy into all of lives, she is an ever amazing angel and none of her family can imagine our lives without her. Thank you God for the gift of her. We are blessed!!”

“She is magnetic. People are drawn to her. She has an infectious laugh and an amazing smile.”

“She will have many opportunities to succeed and has the potential to accomplish wonderful, amazing things in her life.”

“She has introduced us to a whole new world and perspective, as well as taught us the true meaning of unconditional love."

“Sshe is just a little bundle of sweetness with soft kissable cheeks and delicate little hands.”
“Her spirit shines.”

“She is very charming and makes people smile everywhere we go. When she doesn’t want to do something (like work with her physical therapist) she turns on the charm big time, smiling and snuggling, so that you forget she’s not cooperating!”

“She never takes no for an answer and will carry on stubbornly with whatever mission she has in mind - whether it is opening the car door on the highway (we have child locked the car now) or running away across a park at top speed with her head down”

These are the things that no doctor can tell you when delivering the diagnosis of Down syndrome for your child. But, these are the most important things for parents to know. To know that their child will impact this world in ways they never could have imagined. That they will succeed on a level that you never knew existed. And they will inspire a kind of love that you never dreamed of. These children are truly a blessing and make this world a much better place.

I have enjoyed my 31 for 21 experience again this year and I just hope that some of the Ds information I have provided will help bring more awareness and respect to this world for those individuals who may seem different. Every person on this Earth is unique, and that is what makes it so great.

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.

Ds Myths & Truths

Myth: Down syndrome is a rare genetic disorder.
Truth: Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.

Myth: People with Down syndrome have a short life span.
Truth: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.

Myth: Most children with Down syndrome are born to older parents.
Truth: Most children with Down syndrome are born to women younger than 35-years-old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.

Myth: People with Down syndrome are severely “retarded.”
Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

Myth: Most people with Down syndrome are institutionalized.
Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

Myth: Parents will not find community support in bringing up their child with Down syndrome.
Truth: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.

Myth: Children with Down syndrome must be placed in segregated special education programs.
Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.
Myth: Adults with Down syndrome are unemployable.
Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.
Myth: People with Down syndrome are always happy.
Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.
Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.
Truth: People with Down syndrome date, socialize, form ongoing relationships and marry.
Myth: Down syndrome can never be cured.
Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

Testy Tuesday

The cranky, grouchy mood has set in yet again today. Must be the time of the month, or the weather, or my work atmosphere, or the fact that BOTH kids were up at 5 am this morning! My BS tolerance is at an all time low and every little thing someone does, drives me just about nuts. And things that shouldn't bother me do. I hate not being able to function on less than 8 hours of sleep, it just doesn't work for me. LOL

Or maybe my cranky mood is because E had 3 potty accidents at daycare yesterday. I am panicked that it is going to be another kidney infection because this is exactly what happened last time right before the kidney infections hit. So, I am taking her to the Dr. to have a urine culture done just in case it is a UTI to prevent it from going to the kidneys.

Or maybe the cranky mood is because O bit a kid at daycare yesterday. Everyone seems to think it was just an accident so I am not too worried. But, it is very odd that my mild tempered kid bit someone. It is too hard to imagine that she did it on purpose.

Or maybe it is this hideous weather!!

Who knows, I just hope for the sake of everyone around me, it passes soon! LOL

On a better note, O is signing "more" all the time now and it is adorable!!