My Holland, My Italy

2009-11-01T13:00:00.005-05:00

I am doing a fundraiser raffle, it's a secret. The money will go to a special friend and her son. Hopefully to get him a new bike since some people think it's ok to destroy other peoples property. The boy has NLD, a learning disorder and has been bullied enough.

$5 a ticket could win you $100 worth of Athena's products.

If you didn't know, I sell this stuff. Here's the website...
Athenashn.com/2774

You can contact me or donate through the Paypal button below.

2009-10-08T23:05:00.002-04:00

Take something you believe in with all your heart, something amazing to you, something that you are in awe of, something you can not live without, something that gives you that feeling of pure joy and love. Give that something the name "rex". Got it? Really try to believe that REX is that certain something.

Now pretned REX is the word people use to make fun of other people, it's used instead of "stupid", it's used when someone goofs up. But...it's your most wonderful possesion, your greatest feeling and you know that a few selected others feel the same as you. How could it be? Certainly we don't mean it to be cruel but what other purpose could it serve?

Maybe start using REX instead of retard!

2009-07-27T15:53:00.000-04:00

"I can’t change that I have Down syndrome, but one thing I would change is how people think of me. I’d tell them: Judge me as a whole person, not just the person you see. Treat me with respect, and accept me for who I am. Most important, just be my friend.

After all, I would do the same for you."
- Melissa Riggio

Doctors and doctors and more doctors...ugh.

2009-03-24T10:00:00.002-04:00

This is all Vinnie's stuff, just to be clear.

We went to the eye doctor yesterday. Vinnie has a blocked tear duct that at this point would need to be probed. He will be put under for this. Otherwise his eyes look great. So we set April 1st for his surgery.

After the eye doctor was the genetics appointment. I really don't understand why we see her but I am assuming because she kind of knows what things should be looked at with children with DS. She is amazed at Vinnie, he is doing so well. Oh and amazed at his parents too! She suggests since he snores to go the an ENT to see what he says as far as sleep apnea. If you didn't know Vin has a very small penis, almost an innie. So we mentioned that and she suggested seeing an endocronologist (spelling?) to make sure it's not a hormone problem. Because of his itty bitty pee pee it's hard to pull back on the skin and he will most likely need ot be re-circumsized so we are trying to get appointments for all of these things and will most likely put a hold on the tear duct surgery so if he does need to be re-circumsized they can do it while he is under for his eye. Phew...I think that's all.

Rylie is going home

2009-03-23T19:49:00.002-04:00

Yahoo! Not sure if she is home yet or not but the latest news on her Carepage was she had done all the things required to go home. I am sure that her and her parents have a lot still to go through, her being in a cast from belly to ankles(I think that is where it is now). Thanks for thinking about our special little friend!!

Wow, an award!

2009-03-22T13:59:00.002-04:00

Life is Grand

I actually won an award from Karyn at Quinn's Crusaders! Go check out Quinn, she is sooooo cute! I am hoping to meet them one day so Vinnie and Quinn can fall in love! LOL

I guess this means that people are actually reading my blog – ha ha. (I felt the same way Karyn!)

Thanks Karyn!!

The award is called the Life is Grand Award. And for this award I must give five reasons why I think life is grand and then tag five more people. My reasons life is grand are:

1. Life is grand because of my kids, Rudy and Vinnie. What amazing little men!
2. Life is grand because of Jayson, my hubby, even if he does screw up (a lot! te he) he makes it possible for me to be home with the boys and puts up with my crazy emotions.
3. Life is grand because Vinnie has Down syndrome. I know some of you are saying "is she crazy?"...nope, not one bit. Because of Vinnie and his extra chromosome I have met some amazing people, opened my eyes to many new things, and has brought me to a new level of love. What an amazing journey.
4. Life is grand because I have so many people in my life that I can lean on and can lean on me. I love that I am able to lean and be leaned on because if it was just one way or the other it wouldn't feel so rewarding.
5. Life is grand because I am alive, this may seem small to some but I have been through and have seen so much in 32 years that I am truly amazed that I am here.

I think I am suppose to tag other people but I really don't know how to do that. I would love to see anyone else's "Life Is Grand" so consider yourself "tagged" and let me know so I can read!

Rylie update good news

2009-03-22T08:05:00.000-04:00

good news

Posted 18 hours ago

Well we have just been informed Ry is being moved out of ICU today. As I mentioned before Rylie will be finishing her recovery on the cardiac floor instead of the orthopedic floor.....just so they can keep an eye on the cardiac piece. Rylie has turned the corner and is showing huge signs of improvement which is such a relief to Jim and I. What were weren't posting before was Rylie wasn't talking. She was trying to but couldn't formulate her words. A consult was done with the neuro team and no one could really pin point what the cause was. In the end they are thinking it was a combination of all the medicine she was on. Thank you to our friends/family who helped educate Jim and I quickly on the questions to ask and what to look for. You guys are the best!
So from here I believe the last hurdle she has is to get off the o2. Everything else it out which is making her much more comfortable. She is eating and talking to us and right now watching Charlie Brown with Auntie Joanie. Her nurse Lisa and I are going to try and wash her hair and clean her up. This should be an adventure!
We will update later.
Mary

Rylie update 3/20/2009 9pm

2009-03-20T21:43:00.000-04:00

Jim and I met with some of the various groups of people taking care of Rylie today to try and get a better understanding of what is going on. While everyone was helpful there appears to be many different theories and ideas on how to treat Rylie. Because there are other underlying issues with Rylies health we are dealing with so many different doctors. There are so many different teams of doctors who specialize in different things here at Children's it is amazing. The pain management team want to be sure she is being given everything needed to ensure she isn't in pain, which is their objective. However, the heart doctors don't want to over medicate as this can affect her breathing which affects her heart, which is their focus. Then there are the ICU doctors who are here with her during the night when she is miserable and they want to make her comfortable which at that moment is all our objectives. The end result is Ry is going to remain in ICU until this can all get resolved which we are happy with. THis way she has a nurse who just focuses in on Rylie.
Today Ry slept most of the day and Jim and I are praying that doesn't mean we are in for another rough night. If we are.....we are and there isn't much we can do about it right now. We are just really tired and would like to get a solid few hours of sleep. It is amazing how lack of sleep can affect everything especially your coping skills.
We had a nice visit today with Grammy, Auntie Joanie and Auntie Barbara. My dear friend Beth popped in for a few minutes too which was so nice. To my fellow team mates at work......THANK YOU! The care package you sent for RY was such a sweet thing to do. You guys are amazing and I miss seeing you at work.
I will update tomorrow.
Again....thanks for all the great messages.
Mary

Rylie Update, resting peacefully.

2009-03-19T11:15:00.001-04:00

Posted 6 minutes ago

Jim posted some pictures of Rylie's day in Boston Monday before going into the hosptial. We all had a great time!
The top part of Rylie's cast has been removed and she appears to be much more comfortable. The doctors are talking about removing the whole thing for a few days to see if that will help with her beging so aggitated. She is sleeping now and all her stats are looking great! When she wakes up we are going to try and give her something to eat as she hasn't had anything since our dinner Monday night at the Cheesecake Factory. That place is fantastic....thanks Moe Moe for recommending it!
My parents are here so Jim and I are going to grab something to eat.
We will update later today.
Again....thanks for all your kind messages.

Keep the prayers coming for Rylie

2009-03-19T07:47:00.000-04:00

Posted 21 minutes ago

Rylie had another long night. Her o2 stats were dropping pretty significantly throught out the night. Another chest x ray was ordered and showed her lungs were wet so she was given lasix which helped release the fluid. Also, her cast was loosened around her chest. The doctors think it was too tight and not allowing her to take deep enough breaths. Dr. Millis her surgeon decribed Rylie's mood best he said she is pissed off and boy is she ever! She doesn't understand what is going on at all. They don't want to give her anything to calm her because it effects her breathing and she runs into trouble. They are managing her pain as best as they can.
She is finally asleep now so hopefully she will rest for a while. Thanks for all the kind words and messages.
We will update later today.

Rylie Update

2009-03-18T17:38:00.000-04:00

Improving

Posted 22 minutes ago

Well we are happy to report that Rylie has had a much better day. Her fever is coming down and her heart rate is normal. She is still on o2 but it has been lowered to 1.5 liters. An x ray was done again this morning and it indicated that part of her lung collapsed so part of her cast was cut off to provide relief to her chest area and allow some PT to be done. The cast went from her breast area right down to her feet. There was a small whole in her cast around her belly so that was just enlarged. Ry was also given a blood transfusion and it seemed to provide some relief. With her cardiac history the doctors didn't want her heart working so hard and by having the tranfusion this helped.
The staff here has and continues to be amazing. My parents and sister Tricia came down to visit today which was nice because it allowed Jim and I to get some rest. None of us slept last night and we were all feeling pretty exhausted.
The plan is for Rylie to remain in ICU and see how the night goes. She has been sleeping for the past few hours and doesn't seem nearly as agitated as last night. I always knew Ry was fiesty but she gave a whole new meaning to that word last night!
Thanks for checking in.

Prayers for Riley

2009-03-18T09:46:00.002-04:00

Our dear sweet friend Riley had surgery yesterday to correct a hip problem. Riley is 4 years old and just happens to have that little something extra like our Vinnie. Her parents, Jim and Mary have quickly become our friends and shoulders (even if they don't realize it) in this journey we began when Vin was born. Riley came out of surgery yesterday and overnight spiked a temp over 104. She will or may have already had a blood transfusion today. This is all the information I have so far but I will try to update as I get updates from mom and dad. So please keep Riley in your prayers and her parents too.

2009-02-24T13:15:00.001-05:00

This song was written by a father from the Western Massachusetts Down Syndrome Resource Group.

2009-02-06T00:01:00.000-05:00

One year ago I gave birth to my youngest son. His first week of life was filled with ups and downs. I thought one night that we had lost him. As I rounded the corner to the nursery to nurse my son who was hooked up to machines, a nurse basically threw me back in my room. I caught a glimpse of every nurse surrounding my baby, calling for the doctor “NOW”. The nurse who did the “throwing” approached me later and said she couldn’t let me see my son like that, I am so thankful for her quick reactions. An ambulance trip to a hospital better equipped for our Vinnie resulted in me coming home with no baby, my arms and heart felt so empty and hopeless. Two days later a blood test confirmed Down syndrome, the only description I have been able to relate to is when you are in grade school playing dodge ball and someone catches you not paying attention and you get nailed with the ball right in the gut. But life goes on and I learned that nothing could ever compare to having my two boys in my life, that sting eventually fades away. Because of Vinnie I have so many new people and experiences in my life. I have a whole new “family”. I appreciate the smallest things with such enormous joy that happy tears flow so often, a smile, a laugh, rolling over, grasping, sitting unassisted, crawling, getting into a sitting position. I have my moments of doubt and why me, I guess it’s my job as a mother. One year ago I knew my life would NEVER be the same and it isn‘t, it‘s so much more. So today I am celebrating my sons first birthday, an anniversary of a new found family and a new outlook on what life is truly about. Happy birthday my sweet angel.

A couple fun things...

2009-01-21T14:28:00.003-05:00

Vinnie is now getting into and out of sitting! I know to some it seems like nothing and I don't even think I noticed when Rudy did this but it's a nice step forward for Vinnie. So celebration is in order.

My birthday is Friday. Karen (my sister) called and asked what we were doing. "Just staying home maybe a pizza" I said. Her "what about cake?". Me "I just want CookiePus". Cookiepus is an ice cream cake that I had at my birthdays when I was younger, Carvel made it. Carvel has since gone HUGE and mostly just has stuff in grocery stores. But NO, my wonderful sister looked it up on-line and found one in Avon, Connecticut. So Friday I am so excited to see CookiePus!!

I missed a birthday post!

2009-01-08T13:46:00.003-05:00

Rudy turned 3 on December 27th! Happy Birthday love bug.

You have become such a wonderful little man. This past year has been filled with so many exciting things. You learned to use the potty, graduated to a big boy bed, became a big brother (an amazing one at that!). And there were sad things too, the passing of your great grandfather and of a cousin that we never got to meet. Your vocabulary is, well...maybe we should get you some earmuffs! You actually JUST told me "you're freakin me out" and many times while driving "GO LADY!" (obviously from your daddy...wink wink). You make me smile all day long without even trying!! I can't wait to see what this next year brings

Totally stole this from a couple other blogs I follow...

2008-12-15T16:10:00.000-05:00

Commentary: The word 'retarded' is hurtful and needs to be cut from our vocabulary

By Becky Pings / Teen Press Corps
http://www.fresnobee.com/lifestyle/teens/v-printerfriendly/story/1014430.html

'Once upon a time ... there was a retard."

You think that's funny?

I don't.

Neither do the millions of Americans who are joining the growing movement to eradicate the word "retarded" from the modern vocabulary.

Simply defined, "retarded" means "delayed." While it was once a clinical term used to describe individuals with developmental disabilities, it is now an archaic term, a part of modern slang which equates to anything substandard or "stupid."

The word in its modern sense dates back to the 1950s, an insult thrown on school campuses and in sandlots across the nation. It was never as widely used as it is today, however, where one can hardly walk down a street without hearing it or seeing its impact.

I would know.

My brother has autism and Down syndrome. He loves the simple things: baseball, swimming, books and music. And just like every other person, he has feelings. When he hears the word "retard," even if it's not meant as a direct insult, it's not only a slap in the face to him, but to all disabled persons everywhere.

The fact remains that the word "retard" and all its derivatives is a hate word which, even in the most benign context, belittles and segregates the disabled. It promotes bigotry and intolerance in a society that claims "all men are created equal."

The argument to this has been heard time and time again: "But you know I didn't mean it like that. Stop being so sensitive." It is not the intent of a word, but rather its effect and connotation, that has the greatest effect.

Ben Stiller's blockbuster "Tropic Thunder" is a poignant example of the effects of the "R" word versus intention: Moviemakers claimed the liberal use of "retard" jokes was satire, while critics called the humor tasteless and offensive. Because the "satirical" humor didn't stay in context, the word found new popularity, thereby perpetuating discrimination.

Innocent humor. Satire. Whatever you call it, the word "retarded" is a hate word and should be regarded as such.

Just ask my brother, the retard.

Doesn't quite have the same ring that it did in the movie, does it?
Becky Pings attends Edison High School.

Exciting News!

2008-12-07T21:32:00.002-05:00

I have lots and lots to catch up on but I have some VERY FUN news! I had to put a gate around the Christmas tree tonight because Vinnie decided to CRAWL!! I am just overjoyed, I am crying and laughing. He was starting to scoot forward in California but he saw his cousin Grace's prsents under the tree and took off after them. He is still on his belly for the most part but he's really getting around!!!

Thanksgiving...

2008-11-19T13:04:00.002-05:00

Thanksgiving is almost here. This year we are heading to California to spend the holiday with Jayson's dad. We made these plans before grandpa died. Now I feel kind of funny leaving my family, Thanksgiving was grandpas holiday and just recently we had taken over the duties because he just couldn't do it anymore. Don't get me wrong I am SUPER excited to spend some time with my family in San Diego and Bob (Jayson's dad) and his partner (whom I LOVE) in Palm Springs. I think it will be a sad day for me though, to me Thanksgiving was more like grandpas birthday. It was a time where he got to see most of his family together and that to him was what life was about.

So this year my list of things to be thankful for will include the amount of time I get/got to spend with my grandparents, we are/were so lucky to have them in our lives for so long.

I have lots more to say about Thanksgiving and my feeling this year but I have to get ready for my trip!

Why do we ALWAYS have neighbor issues?

2008-10-30T12:17:00.003-04:00

So, our neighbor across the street apparently thinks it's ok to dump his yardwaste onto our property. Why is it that people think it's ok to do these things? Who dumps their CRAP onto other peoples property? I just don't get it. And then, why is it always us? This was the stupidness that led to the whole mess at our old house!! UGH! What do I do now? I really want to pick it all up and dump it back onto their property but I know that would be childish (would feel good though).

Rudy finds out Vinnie has DS...

2008-10-29T21:11:00.002-04:00

Jayson and I were filling out the survey some doctor is doing for DS research stuff. The four of us sitting at the kitchen table, Rudy eating his mac and cheese and me feeding Vin his green beans and applesauce. Jayson says to Rudy "Do you like having a brother with Down syndrome?" Rudy "no". Jayson "you know Vinnie has Down syndrome right?" Rudy "I don't like baby food". Please be on alert, baby food IS Down syndrome! And all this time we thought it was genetics!!

Some pictures...

2008-10-29T17:33:00.001-04:00

Rudy's Monster

2008-10-28T13:37:00.005-04:00

Our first Buddy Walk...

2008-10-27T17:21:00.002-04:00

Our T-shirts

Vinnie's sweatshirt (arms of it)

Vinnie's sweatshirt (back of it)

Ahh...just in time for the Walk part!!

And the after party...tennis anyone?

Uhm, Jimbo? It's only a game!

A thank you!

2008-10-27T15:49:00.001-04:00

You may never know what it feels like to have a few words rock and shatter your world. It’s like a sucker punch to the gut. You could almost pass out, your knees want to give. Fear and sorrow all rush through your body. You can’t breathe but yet you have to reclaim yourself because in front of you is the most beautiful baby you’ve ever seen. This moment will be embedded in me for the rest of my life. “The test for Trisomy 21 came back positive”

I sent out a letter a while back, explaining the Buddy Walk and asking for participants and sponsors. Some of you it was just in conversation that you found out about it, some others from a jar sitting on a counter. But all of you touched our lives by walking with us, donating, or simply throwing a couple bucks into a can.

Our first Buddy Walk was amazing. As a team, I believe we made a donation that was almost $2000.00 in honor of Vinnie. Words can not express how grateful we are to have such wonderful people in our lives. The amount of support and love that this little man has brought into our lives is almost overwhelming.

“The test for Trisomy 21 came back positive”…at that moment, 8 months ago, I couldn’t even imagine the beautiful things that were and still are ahead of us. Thank you for being part of our miracle.

Western Massachusetts Buddy Walk

2008-10-22T09:58:00.003-04:00

It's this Saturday! Details are on the MS and DS blog Becca and I have at

teamflash4u.blogspot.com

Life happens...

2008-10-16T21:45:00.003-04:00

I have been totally out of touch with many people and it seems there is a lot going on!

My sister in law is pregnant!! WOO HOO!! Congratulations!!

A family member is going through a rough time. Recently they lost a young friend (I think 10 yrs old) to cancer and now going through a divorce. Please send an extra prayer for them, I know that it's times like these that you doubt Gods existence and intentions. Stay strong.

Blah

2008-10-16T13:57:00.003-04:00

I am feeling quite BLAH. Our Buddy Walk is coming up and I have no motivation right now to do anything. I did get a few of the sweatshirts for the little ones done but am not finished with the rest of them. The adult shirts are being made and we should have one by the weekend, the rest by Friday of next week (walk is on Saturday). My gums are swollen for some reason and I am exhausted! Ok, I'm done complaining.

I forgot about this.....LOVE IT!

2008-10-03T08:28:00.003-04:00

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.

Chemo day number II

2008-10-03T00:20:00.002-04:00

Tomorrow, oh wait...TODAY Becki goes for round II of Chemo for MS. The last results were white count stayed the same but the MS doctor said something good. LOL I know I really need to be more technical. Basically MS doctor said "wow it's looking good" and the chemo doctor said "no change" so I think that the chemo was just attacking the MS, it was out to seek and destroy and it did. Ok, so probably not but a girl can dream right? So to my understanding, which could totally be false and made up, Becki will receive a higher dose this time. Gotta feed the boy!!!

Early Intervention Evaluation

2008-10-02T09:21:00.002-04:00

Vinnie had his evaluation Wednesday. He is doing very well and if not for his "diagnosis" he almost wouldn't qualify for services.

Gross Motor was at 6 months
Speech (or whatever they called it) 8 months
Social stuff (I know I am so technical!) 9 months
And of course the Eating (they call it something else) 4 months my little non-solid food monster!

I don't have the report yet because the woman doing Fine Motor will be here Friday, we originally had the appointment last week with everyone here but we all know last week was a little rough around here.

I am so pleased with Vinnie. The eating we are working on but he is definately not under nourished. And he is doing so much better this past week, he grabs my hand and shoves the spoon into his mouth!! Yippee!

2008-09-30T11:13:00.002-04:00

Today they buried my grandfather. At the entrance of the Veterans cemetery the words "The price of freedom is seen here"(or something very close to this), just that winded me. I took a video of the Guard taking and carrying the casket from the hearse to the building. Grandmas words after this were "that was really nice, Adam would've enjoyed that" and he would've. He was very proud to have served in the Air Force. I will copy a letter that a Korean soldier gave him the day he was coming home from the Korean war, it basically said that my grandfather was the greatest man America could have...how true those words are.

Make an on-line slideshow at www.OneTrueMedia.com

Reality?

2008-09-28T23:30:00.002-04:00

This last week was just horrible. A week ago today I layed next to my grandfather who was about to die; kissing his head, telling him I loved him, telling him how he was like a father to me, telling him it was ok to let go (yes mom, when everyone left the room I spilled my guts to him). Just before that some other things happened that made me want to scream at God. So, Thursday we mourned a loss, Friday we had a church service and tomorrow we will go to the Veterns cemetery for the final service. I have actually been thinking about this day for some time now, years maybe, because there is a beauty in an Armed Forces funeral. I am also dreading it, the whole flag thing is hard to see when it is on T.V. and fake nevermind my grandfather.

So, I don't think my mind has caught up to reality yet. My grandfather is dead, the man that practically raised me, the man that made sure I was fed before school, the man that had an open door policy to his home for us and all of our friends. He's gone, he's not going to just be there anymore. He's not going to be there to smile that giant smile at my sons when we show up at the house. But I can only be so sad. I seem to cry a few tears and then it's over. I feel like I am going to breakdown one day and scream "F*CK, my grandfather is dead". I have had this feeling before, Vinnie having Down syndrome is the same way. Am I going to one day realize that he really DOES have Down syndrome? I KNOW he has it but shouldn't I be more upset? Shouldn't I be depressed and withdrawn? Shouldn't I be asking why me? What if these two realities hit me at the same time? I sure hope I am not driving, especially in any type of traffic. I am starting to feel anxious waiting for myself to explode or perhaps implode.

Random

2008-09-25T23:21:00.003-04:00

I sat at the table with my mother and my aunt. They were praising me for making sure there was a meal each night since the first of family had arrived on Monday. To me cooking is nothing, it's what I know how to do. Maybe it's how I "deal". We all have a role in the family. So we chatted more and we began to talk about how Tony is the "speaker", we all wish we could read a eulogy. So then I told them about my recent blog entry about the memories of grandpa and how at the end it changes, the most recent stuff I remember is not the fun stuff, it's not pretty. Then my mother said something about how as time goes on you start to put those great memories aside, they get pushed back for a while until they get tapped. A couple nights ago they were tapped, my sister and I sat and talked about all of the fun things grandpa did with us, his quirks, his temper, his love, his selflessness. So now I wonder, if I had to write a eulogy how many people would "get" it? I know Karen and Eugene would laugh and cry and understand every word I wrote. I can only capture a small part of his life. That's all, just random thoughts I guess.

Today

2008-09-25T09:47:00.003-04:00

Today I will dress my boys in cute little outfits, my family will look daper. Today we will hold and comfort eachother. Today will most likely make it all "Real" to many of us. Today I fear might change the younger grandchildren, burn an image into their young minds. Today will be full of "I'm sorry" and tears. I imagine that today grandpa will be looking down on us smiling at his family and friends gathering in his honor (and shedding all the sympathy they can...this was his thing!). Today a peice of my childhood dies.....

Memories

2008-09-22T15:22:00.000-04:00

I attribute a lot of things to my grandfather, my love for cooking and family, a knack for fishing, a temper that could erupt in seconds.

Memories are abundant when I think of him, Joy in the faces of family when sitting around at Thanksgiving dinner or opening up stockings to find beef jerky, nuts and pepperoni. Fishing with the Nelsons or Eugene from next door. Trips to the recycling place where we would try to trick the scales to get more money. The smell of Juicy Fruit gum. The comb over. Picnics and parties. Tree forts and swing sets cooler than any kid on the block had. Trips to the beach with fake labels for his beers. Duct tape. Dinner at 6pm, don’t be late. A warm car on snowy mornings. Paper mache pancakes. Christmas lights laced with barbed wire. Pumpkins wired to railings. A garden full of vegetables. And then, we grew up and time doesn’t stop. We grew older and so did he, then the memories were canes and dialysis. Slips and bruises. Pacemakers. Walkers and wheelchairs. A jolly man to a frail one. The garden got smaller, the pool taken down. Christmas lights went from the Griswalds to a strand or two. So, I held his hand and kissed his head and prayed for God to take him quickly and painlessly. I know he will want to go fishing and look over Thanksgiving dinners. And heavens garden will have a plethora of tomatoes. The children will be in awe of all he can do, that jolly man who smells like Juicy Fruit gum.

Rest in peace Padu.

2008-09-22T13:37:00.002-04:00

Say hello to Lynn for me and do lots of fishing, I know you probably miss that! I'm happy that the pain is gone. When I come Home we will take a walk and talk about life. I will miss you so much.

as if the sucker punch wasn't hard enough

2008-09-21T22:31:00.002-04:00

thanks again God for kicking me while I'm down. Please take my grandfather peacefully, he's suffered enough. Give me this one thing PLEASE!

Dear God,

2008-09-21T00:25:00.004-04:00

You let me down and I can handle that. I can see past my own desires and dreams and tell myself that you have a plan for me, for us. But can you stop slapping me in the face with it? I'm getting tired and worn out. Can you just let me stay above for a while? Are you there? Can you hear me? Can you feel me? I am the one aching, hiding, silently sobbing.

Team Flash, doin' it again!

2008-09-20T16:22:00.000-04:00

2008-09-19T16:48:00.001-04:00

A day in the life of Rudy

2008-09-17T10:00:00.004-04:00

Tiffany!

2008-09-15T23:35:00.001-04:00

Woo hoo! Get the aquanet! I totally got it wrong, Tiffany will be preforming at the Big E the 22nd and 26th at 3pm and again at 8pm!! Fun times!

Conversations with Rudy

2008-09-12T12:02:00.003-04:00

This morning I had the great JOY of having both my boys in bed with me. It was me, then Vinnie and next to Vinnie was Rudy. This is how the conversation went

Rudy: I love him
Me: He loves you
Rudy: Mom
Me: Yeah bud?
Rudy: I really REALLY love him
Me: You're very sweet buddy, don't pull his fingers backwards
Rudy: (while rubbing his head against Vinnie's head) He's me BIG brother
Me: No Rudy, he's your little brother
Rudy: Oh yeah. He's my baby
Vinnie: Bah bah bah pllll
Rudy: I love you mommy

You think Vinnie has a lifetime buddy? I sure hope so!

Big E!

2008-09-11T23:52:00.002-04:00

Yum! And that's all I have to say about that. Ok, not really. We will be there as much as possible to hang out with daddy and see the animals. And if for some strange reason you happen to have a motorized scooter thingy that I could borrow please let me know, it could make someone very happy...I think.

I should be getting the DS Buddy Walk letters out soon and don't forget if you can have a donation bucket at your work let me know (Nana Lou, I have one for you). Registration at 10am, walk at 11am.

Dear....

2008-09-10T01:29:00.003-04:00

Dearest ______,

Your most recent mail was just obnoxious. I can only do so much and after much thought and searching I have found that opening up to you does more harm than good. I am looked upon as a lunatic for having feelings about my son having Down syndrome and the way the world reacts to and treats people with disabilities. I dare you to be me for a day and see what it's like. Try dealing with the inner most emotions of raising a child with special needs and have someone on your case about the most infintile things, dragging your husband away from you to do stupid chores while you are home dealing with a toddler and a new baby (with Down syndrome!!), a house that is incomplete, therapies, doctor appointments, the unknowns of the future all while running a house and raising a family. Step into my shoes for just a day and then PLEASE PLEASE PLEASE let me know if the e-mail pity party for yourself needed to be sent to me? Grow up.

Update on today.

2008-09-05T22:29:00.002-04:00

We had a great time in the "treatment" room. Kind of strange having a room FULL of people, no curtains or anything...did I say FULL yet? OMG! FULL! I think it went pretty well but I am not the patient. I am hoping that Becki continues to feel good or even OK through out the next few weeks. Since she is receiving a doses every 4 weeks and I believe a smaller dose they (the nurses) say she probably won't have a lot of the common side effects. Keep on praying! Blood test September 12th, 15th and 18th. Neurologist 22nd? And next dose October 3rd.

Tomorrow

2008-09-04T22:05:00.003-04:00

Tomorrow I will go with Becki to her first chemotherapy treatment. We have Mad Libs, Family Feud, and a couple puzzle books to keep us occupied. We are hoping NOT to get kicked out for being obnoxious but you just never know with us. Please remember to pray that everything goes smoothly and this helps slow down the progress of the disease. We might start a blog about MS and chemotherapy which would be nothing but hilarious coming from the two of us. I'm sure that this will come up in conversation tomorrow so keep an eye out for it!! Thanks for supporting her (and me) and for all your prayers!

Guess what...

2008-09-03T17:54:00.002-04:00

This is Rudy's newest thing. Guess what is followed by nurmerous things usually something about the day or what he has in his hand or what's on TV. My favorite is "California". He has just started "chicken butt".

2008-09-01T21:10:00.001-04:00

Rudy and Vinnie

2008-08-29T08:16:00.001-04:00

Vinnie...

2008-08-29T08:12:00.003-04:00

Signing Mommy?

Pray pray pray...PLEASE!?

2008-08-27T22:28:00.002-04:00

I will just copy and paste my bestest friends recent MS update e-mail.

hello everyone!

it is totally impossible (sorry) for me to call all of you individually with updates on my MS "stuff". i am not trying to be impersonal, but i want to get everyone the info without running out of breath. and since you all support and love, love, love me.... it is only fair :-).

i will begin my monthly chemo on september 5th, in combination with steroid treatments. this is referred to as a "pulse therapy". i am curious how many iv's will be in my arm at once- chemo, steroids, fluids, anti-nausea med.... i am taking bets :-). i see lots of needles in my future- yuck. bloodwork before treatment, the treatment itself, bloodwork 10-12 days after...... u all know how i feel about needles. EEK!

i will meet with the oncologist before every treatment and meet with my neurologist every 2 weeks. i am super optimistic that this will help "buy some time" with the progression of the disease, which has been kicking me pretty hard.

my white blood cell count will be lowest 10-12 days after my treatments, so PLEASE do not visit/make plans if you are sick!!!!! also- if i DO happen to experience hair loss (or scalp alopecia, which is the nicer way to say it)..... feel free to shave your head!!!! jayson is my lead man, as he was the first to offer- thanks jay!

i ask only ONE THING from everyone, regardless of your religious beliefs or non-beliefs...... i have been told that prayer circles are amazingly effective and i would like to start one for myself :-). please pray that this treatment will slow down the progression of my disease. ask the people in your lives to do the same. the bigger the circle, the bigger the chance of success. thanks in advance :-)

get that prayer circle started!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

love ya,becca

I call her Becki though!!

A late night thought

2008-08-25T22:43:00.006-04:00

I am laying here looking for information on things to do while we are in California over Thanksgiving week. I decided to look up Down syndrome in the San Diego area and came across a website that you can look up and add different meet ups. It was then that I felt something familiar in my heart.

It was only about 18 months ago that I sat in the office of a reproductive specialist surrounded by something odd. I have to start by saying that the mood inside one of these offices is usually grim. We all know what we are doing there but in most cases you don't even glance at anyone in the room. I don't understand that, shouldn't we talk to eachother and reach out to offer or seek support? Anyway, this day was different because there in the waiting room were people from the local support groups. They brought snacks and drinks, it was lovely. I talked to one of the people "running" it. She came up to anyone just entering, she offered her support and gave information on the group and other helpful information. I explained that I had already had one IVF miracle and she said that I really should go to a meeting because I am a success story and probably a good resource. I found myself wanting to stay there in the waiting room to talk to people or even just the one lady I had already engaged in converation with, this was something that just did NOT happen here, like I said this is a grim place where nobody looks at eachother.

Wow, I've been here before. As days go on with Vinnie in my life I find that more and more of my earlier life experiences intertwine with the one going on right now. Did I tell you that our Pastor went to college with my uncle and was renting a room from Vinnie's physical therapist? And my uncle's wife is a speech therapist, my sister a great source for education advocation, the town we moved to because of some "bad" neighbors has one of the BEST early intervention programs in which the nurse, who just happened to start the month before Vinnie was born, is a friend of the family. I've fought for acceptance before (refer to my post "I've been writing this for a while..."), I've seeked and offered support. It's all familiar territory in an odd way. But, as I have been saying (mostly in my e-mail signature) It's funny how that one little chromosome changed EVERYTHING

Cardiologist Appointment

2008-08-25T17:12:00.002-04:00

Not for Vinnie though. Since Rudy had Kawasaki's Disease last year he needs to go back to the cardiologist for a follow-up. November 22nd is the date. Kawasaki's disease is a strange thing since nobody knows how you get it or what it is. It doesn't seem to be something you can catch and the treatment isn't neccesarily for the disease but the affects of it. Rudy had a terrible fever followed by very red hands & feet and then the rash went to basically all over his body. I thought for sure hoof and mouth and since the biggest fair in New England was going on at the same time and we went to the petting zoo it made sense. But nope nothing has ever been simple with Rudy!! So he had IVIG treatments and a high dose asprin therapy. One of the arteries (? I think that's what it was) near his heart was a little enlarged but it went down with the aprin therapy and the follow up is just ot make sure it is still small. I think that about covers it, I probably fubarred a lot of this but you get the picture. Vinnie was cleared from seeing the cardiologist months ago. No heart problems for him...hmmm...my son with DS has the least health problems!

Bloggings of an insomniac

2008-08-18T23:22:00.000-04:00

There has been much controversy over a movie that recently came out in theaters. This film has poked fun at numerous things but the people it pokes fun at most are those with intellectual disabilities. I haven’t seen the film, nor do I want to. I have however heard very honest reviews from people who have seen the film. These people have children with intellectual disabilities or infants that no doubt will end up on the mild-moderate mental retardation end of an IQ chart. My youngest son, Vinnie, will no doubt be there too. You see, he has Down syndrome.

From what I understand of the movie, it’s not just the word “retard” that is offensive. It’s the whole manner in which this word is used and along with other aspects of the movie it makes for some really great immature jokes. This movie is geared towards young men 15-25, the ripe age for dick and fart jokes, the ripe age of impressionable minds. We all know what happens on in the hallways of American schools or on the playgrounds. I can see it now; the voices of the most popular, the prettiest, the funniest children “Dude you just went full retard”. And what now am I suppose to say to my children, to my cousins, to my nieces and nephews who will undoubtedly hear these words and wonder what it all means? Words hurt, we all know this.

There are people who will argue saying “it’s only a movie, lighten up” or “get a sense of humor”. I’ve already heard it. I agree that it is a movie, it’s a movie that went that extra step, went over the line. But I don’t think that the movie is the big picture here, it’s because of this movie that we, the parents of children with intellectual disabilities and the self advocates, have this opportunity to educate. And with our educating we have only proven how this movie has already hurt us. You can look up just about any argument about this movie and see the responses of people who support this movie, most of them open and honest saying it’s just a movie (we get that part) but then look deeper, find the posts that say “it’s always fun to make fun of retards” “retarded people have less rights than a farm animal”. These are quotes, real quotes! The t-shirts are already out “Never go full retard” “Once upon a time there was a retard” and they will be worn and they will be laughed at. People have already stated that they WILL buy the shirt and wear it everywhere because “it’s a free country”. But I dare those same people to wear a shirt that simply says “nigger” and see how funny that is. Why is it that people who, for the most part, can not or will not defend themselves are the ones being humiliated? Easy targets I guess.

Well, I don’t want to fight. I want to be ignorant about using the word “retard” just as I was before Vinnie came into my life. I didn’t ask for this, I didn’t raise my hand and say “over here, I’m ready for that task”. I wanted a “typical” baby just like every other mother wants. But here he is, a beautiful baby boy. He is perfect in everyway. He has an older brother who adores him. He has won over many hearts in his first 6 months. So here I am raising my hand saying “hey, look at me, here I am embracing this”. Here I am wanting what every parent wants for their children, here I am fighting to make sure he’s safe, here I am trying to educate so my beautiful baby boy will be accepted and not humiliated or ridiculed. Here I am, the voice in the back of your mind that just won’t go away. Here I am once again voicing my “opinion”, I’m not going anywhere.

Sign Language

2008-08-18T11:20:00.003-04:00

Vinnie is purposfully (spelled correctly) putting his hand to his face. I of course think he is trying to sign mommy! Is it wishful thinking? I haven't a clue when babies could possibly start signing but I think it's cool!

Rudy's Potty Time and Vinnie's ears

2008-08-11T14:09:00.004-04:00

Rudy is using the potty like a big boy and has been for over a month now. We still use a diaper or pull up at night but he always wakes up dry and then goes to his potty!! Woo hoo! Today was his first day back (we have been sick, again) to playgroup and he didn't have an accident there either. I was afraid he might since I was not there for him to say "I need to go". We are so proud.

We went again to the audiologist and Vinnie's ears seem ok, no more fluid so that was nice. It's hard to test his little ears because his canals are teeny tiny so in November we will go again. But all seems good!!

I had to put the spaces in so I am sure I goofed somewhere...

2008-08-08T16:01:00.003-04:00

From today's email from the director of the DSALA, Gail Williamson: Down Syndrome Association of Los Angeles

Down Syndrome Association of Los Angeles Media Alert Tropic Thunder August 8, 2008

What about "Tropic Thunder?"

Dear DSALA Family and Friends:

I want to update you on the past and current status of the progress with the Dreamworks film "Tropic Thunder." Some of this may be redundant if you are fully in the loop reading the posts on the internet. This is also very long, but it should answer your questions as best I can and allow you to take your own action in response.

On Monday, July 28th I was made aware of an article in the Hollywood Reporter about "Tropic Thunder" a new film by and staring Ben Stiller due for release on August 13th. The article commented that the film included satire about people with intellectual disabilities. I was contacted by other individuals and organizations because of our past involvement together in media advocacy for individuals with DS and other intellectual disabilities. After a couple of days of research and many emails I was led to the website for the film with-in the film "Simple Jack" and my fears were confirmed.

On Thursday, July 31st I called Dreamworks to discuss the use of the "R" word and the inclusion of the character of "Simple Jack." As a result of that dialogue with the head of publicity I was invited to share my concerns in a meeting with DreamWorks Executives. I got back to my contacts from several national organizations representing people with disabilities and together we collaborated on what to present at the meeting. In response to my emails Tim Shriver of Special Olympics began discussions with Dreamworks as well. He joined us in our new coalition. Tim and I continued to make arrangements with DreamWorks.

On Wednesday, August 6th, as reported in the media, this newly formed coalition attended the meeting at DreamWorks. We were limited by DreamWorks on the number of groups attending, but assured that if following the meeting and our report back to our constituents that individual meetings could convene with individual organizations if they requested. My personal thanks to several of the organizations who graciously bowed out, (including NDSS and NDSC) not attended the meeting, so it could take place as planned. From the community representing people with disabilities the meeting included:
Peter Berns: The Arc of the United States (present)
Tim Shriver: Special Olympics International (by phone)
Andy Imparato: American Association of People with Disabilities (present)
Gail Williamson: Down Syndrome Association of Los Angeles (present)
Richard Rosenberg: TASH (present)
Sarah Pripas: Autism Self Advocacy Network (present)
Joe Meadours: People First of California (present)
Loretta Claiborne: Special Olympics (by phone)
Julie Petty: Self Advocates Becoming Empowered (by phone)
Eddy Barbenell: Actor, Special Olympics (by phone)

The DreamWorks and Paramount Executives in the room included:
Stacey Snider, Co-Chairman/CEO, DreamWorks
Jeff Small, COO, DreamWorks
Christine Birch, Marketing DreamWorks
Megan Colligan, Marketing Paramount/Vantage
Chip Sullivan, Head of Publicity DreamWorks
Josh Galper, Attorney brought on by DreamWorks

The meeting started out with comments from Self Advocates in the room and on the phone. They were eloquent. They spoke of their hard work for the dignity and self esteem that others take for granted. They also expressed that the "R" word is a "hate" word and the inclusion of it in the film would case them more isolation, marginalization and discrimination. Following that introduction we commented on why we were before them and although we understand that the film was not intended to make fun of individuals with intellectual disabilities, that in its attempt to make fun of actors and Hollywood it was creating insensitivity toward individuals with intellectual disabilities. We requested to be given the opportunity to screen the film in order to continue with our discussion and were told that we could on Friday, August 8th and Stacey agreed to a phone conference with us again after viewing.

We then presented some actions we would like to see from DreamWorks in order to counteract the damage the film would do to those we represent. The coalition demands included:

Film Screening: Arrange a film screening of "Tropic Thunder" for disability groups, paid for by the studio, in Los Angeles and in Washington, D.C. before the end of this week.

Public Apology: Make a public apology for the thoughtless use of the "R-word" and derogatory depictions of people with intellectual disability with a summary statement of the studio's intent to curtail its damaging effect and its commitment to specific next steps (as laid out below).

Film Editing: Completely eliminate all direct mention of or reference to "the r-word" jokes, disability euphemisms, and disrespectful depictions from the film before it is distributed to theatres and released to DVD. Film Promotion:

Eliminate all trailers, web postings, and ads that focus on "the r-word" jokes, disability euphemisms, and disrespectful depictions, and reference the "R word."

Specially Created Trailer: Fund and produce a trailer to air prior to each showing of "Tropic Thunder" that addresses the use of the R-word and the hurtful impact it has, even when people do not mean it that way. This same trailer would also be included within the DVD packaging for after market sales.

National Campaign: Create and fund a comprehensive national educational and advertising social campaign to eliminate the pejorative use of the word the r-word from use in everyday language, and more importantly create a world of dignity, acceptance and inclusion for people with intellectual disability. The campaign would be developed and vetted by an advisory council of representatives from the coalition. The campaign would also be designed to capitalize on social media and social networking to bring young people together and empower them as agents of change for the R-word campaign and involve appearances of those involved in the film's creation.

Film Studio Summit: Convene the heads of all the major studios to address the appropriate portrayal of people with intellectual in future films and television programs. The summit would also help reduce stigma surrounding one of the largest disability populations in the world while also raising the awareness of the extraordinary gifts and talents people with intellectual and developmental disabilities have to offer.

Stacey Snider did the talking for Dreamworks and seemed to be genuine in her concern over our presentation. She expressed that she wanted this to be the beginning of a discussion that would go on past this film and into the future. She also informed us that the entire film is over the top; that the violent scenes have blood spewing out like a "Saturday Night Live" skit, way beyond realistic. She said there is nothing in the film to make people think they really "mean it" about anything; but she did say that this information was not intended as an excuse. She asked for some time to absorb our requests and did inform us as to what they had already done after we first expressed our concerns.

The following information was provided as follow-up to the meeting by Chip Sullivan of Dreamworks: At the outset, we want to reiterate three points:
(1) We sincerely regret having offended or hurt anyone with disabilities through the promotional material you have seen, and we have a full appreciation for why that material appeared insensitive. That is why we took immediate action, which we detail below, after hearing from you last Thursday.
(2) We view our discussion as the beginning of not just a conversation about this one movie but a longer-term relationship in which we can work together to make our studio even more sensitive about how people with disabilities are portrayed and to increase the numbers of those with disabilities in the film industry work force. Those are goals we share.
(3) To remind, the film is in no way meant to disparage or harm the image of individuals with disabilities. Instead, it takes a satirical look at Hollywood moviemakers and actors and their excesses, and makes its point by featuring inappropriate and over-the top-characters in ridiculous situations. The "R" rating limits those who can attend and how we market the film.

As you requested, here are steps we took to address your concerns even before we met yesterday: · As soon as we heard from you, we responded immediately to engage in a dialogue and schedule our first meeting. · We took down online material focusing on "Simple Jack," including an entire website devoted to the fake movie and images in a cross-promotional website at www.Tugg Speedman.com. · We decided not to market the movie using "Simple Jack" images or references in television, radio, or print advertising. · We excised images and references to "Simple Jack" in two promotional television programs slated to air on E! and Comedy Central about the making of "Tropic Thunder" that had already gone out the door. As promised, we will make the movie available to be screened by each of you on Friday, August 8 or Monday, August 11. (We were told in the meeting that it would be on Friday, this Monday date is new to me.)

Once again, we thank all of you for taking the time to share your thoughts with us, and we see great potential for us to work together to improve the film industry's creative and work environment for people with disabilities in the future. END OF DREAMWORKS STATEMENT

Now, some of my thoughts on all this. My concerns focus on what the message from character "Simple Jack" will take to a segment of the community. Yes it is an R rated film. But everyone over the age of 17 is not responsible, understanding and inclusive of individuals with intellectual disabilities and we know that children under the age of 17 view R rated films.

As for being "equal opportunity offenders;" something the first rep from DreamWorks told me when he took my message for Chip. I requested a count of all the references to the word "the r-word" and its derogatory euphuisms in the film. Along with the same for the "N" word and "Faggot" since Chip informed me that they make fun of these groups as well, and these are the names equal to "the r-word" in the community I represent. Chip told me that was a reasonable request although he did not follow through on it. No matter what those numbers might have come out to be, being equal is still not the luxury of people with intellectual disabilities on any other playing field to begin with. I am sure there are many employees at DreamWorks who are Black or Gay, how many employees are there with intellectual disabilities? There are individuals with intellectual disabilities who have skills and would like to be employed by DreamWorks. There are supported work programs that would be happy to work with DreamWorks to bring in employees who have been proven to be some of the best. Check out the mail room at ABC/Disney, talk to SAG about the "Workabilty" program, and check out the students at "Inclusion Films" in Burbank who are training to work in the film making business. This would be closer to equal, if people with intellectual disabilities were employed at DreamWorks.

I am concerned about people with Down syndrome even though they are not identified in the movie. The face of DS is the face of intellectual disability to the general public. I work with productions that assist in casting people with DS when they want their viewing public to know that the character has an intellectual disability. People with DS are easy targets everyday while just minding their own business because their face announces their disability. I can imagine my own son being called "Simple Jack" or "Full the r-word" by someone "vulgar" as my son Blair who has DS refers to people who use this language.

I believe one of my greatest sorrows over the impact this film might make is in regards to the pre-diagnosis of DS being given to expectant parents. With the recent "American College of Obstetrics and Gynecology" guidelines in 2007 calling for every expectant mother be offered a screening for genetic differences including DS, I have the opportunity to talk with parents who are trying to make a decision to choose to continue their pregnancy or not. Many who consider terminating their pregnancies do so because of the fear of how society will treat their child and their family. We are at a reported 90% termination rate in Los Angeles as it is. I know without a doubt that "Tropic Thunder" will contribute to the verbal abuse expressed toward individuals with intellectual disabilities and I know that there will be pregnancies that will be terminated because of the outcome from these images. I am deeply saddened this film will rob people of the joy I have found in my life being the mother of Blair and the Executive Director of the Down Syndrome Association of Los Angeles.

HERE IS SOME INFORMATION SO YOU MAY USE TO MOVE FORWARD WITH YOUR OWN ACTION IN REAGARDS TO "TROPIC THUNDER.

The film will premiere on Monday, August 11th in LA; the information I have is as follows: Monday, August 11th, 2008 Press Check-in begins at: 5:00PM Arrivals begin at 6:00PM Screening begins promptly at 7:30PM
MANN VILLAGE THEATRE 961 Broxton AveWestwood, CA 90024 WHO: Cast members and filmmakers attending include: Ben Stiller, Jack Black, Robert Downey Jr., Bill Hader, Danny McBride, Steve Coogan, Nick Nolte, Jay Baruchel, Brandon T Jackson, Matthew McConaughey, Justin Theroux (Co-Writer and Producer), Etan Cohen (Writer), Stuart Cornfeld (Producer), Eric McLeod (Producer) Other celebrities attending include: Jamie Foxx, Tobey McGuire,Randy Jackson, Jennifer Love Hewitt, JJ Abrams, Jon Voigt, JasonBateman, William Shatner, Jeanne Tripplehorn, Terri Hatcher, Lisa Kudrow, Jerry Stiller, Alicia Silverstone, Chris Hemsworth,Zachary Quinto, Jay Roach, John Hamburg, Wilmer Valderrama, BradSilberling, Amy Breneman, Nigel Lythgoe, Christine Taylor

Also if you would like to reach anyone of the people at DreamWorks, Paramount/Vantage or Ben Stiller with your concerns, their names are above and below are the main contacts for them.

DreamWorks 100 Universal City Plaza, Bldg. 5121, Universal City, CA 91608 818-733-7000

Paramount/Vantage 5555 Melrose Ave., Ball/Lasky Bldgs., Los Angeles, CA 90038 323-956-2000

Ben Stiller, Writer/Director/Producer Read Hour Films, 629 N. La Brea, Los Angeles, CA 90036 323-602-5000

As I am ready to send this email at 11:45 AM on Friday, August 8th we have not recieved any information from DreamWorks on a screening. I called Chip Sullivan's office this morning and was told he was in a meeting. I have yet to hear from him to notify the groups who were represented in the meeting about a screening that we were originally promisied today. I would encourage you to let your voice heard!

In support of our loved ones!

Gail Williamson Executive Director Down Syndrome Association of Los Angeles.

Hate and making a change

2008-08-08T10:29:00.003-04:00

Since I am so out of reality on to what movies are coming and going I never got to see the Tropic Thunder preview or was it the trailer? Whatever, that's not the point anyway. I only heard of this movie because of posts on the Down syndrome support forum. I must say that I have since seen commercials for it, that do not use the dreaded "R-word", and I would've been excited to see a silly movie with a couple of my favorite actors. But apparently this movie has stirred up an entire network of people with phrases like "Never go full r-word" and "Once upon a time there was a r-word".

What to do? I'm not quite sure, I for one will not be viewing this movie. I admit that before Vinnie was born I probably would've looked for it when it came out on DVD, I didn't know the impact it could have and I think many others are just as ignorant. If it's not thrown in your face that something is wrong and why it is wrong and the impact it could have how would you know? Yes, I have thrown the r-word around. Yes, I used this word when a friend was doing something not so brilliant. I even said it once after Vinnie was born when Jayson and I were driving and someone pulled out in front of him, my exact words "ugh, i hate r-word people". I think this is when I truly realized the impact, I had just said I hated my son!

So, Joanne, why are you now saying this is wrong? Why are you being a hypocrite? No one ever pointed me to the websites, blogs, support groups that explained what people felt. No one said "hey when you say the r-word it's like throwing around racial slurs". But what hurt can a movie do? Think of all the teens just waiting to see this movie, look at the lines of impressionable people waiting. How many are going to come out of this movie and use the r-word in a manner that is hurtful to people? I can see it now because I was there, I was one of those people. I can't take back what I have done but I can change who I become and so can you.

There are so many people out there that have a view on this movie and the damages it holds and my little opinion is not a well written one, just a sum of feelings. If you feel you need more information or more "proof" please visit http://davehingsburger.blogspot.com/ Mostly August 6th and 7th post but his entire blog if AMAZING. He refferences http://icad.wordpress.com/ and http://www.patriciaebauer.com/ (new and commentary on disability issues). Check them out and decide for yourself.

Amen Sista...RE: Tropic Thunder

2008-08-07T00:14:00.004-04:00

From McKenna's Blog

Never Go Full Retard? Are you kidding?

This is definitely not the first time I've been disappointed in Hollywood, but I think this may be the first time I am actually HURT by Hollywood. Ben Stiller's new film, Tropic Thunder has crossed the line. Dreamworks Production has agreed to meet with many representatives from disability rights organizations at 5pm Pacific today. To be honest, I don't know what can come from this meeting other than prevention of further damage. I will be very surprised if the scene is not pulled, but the hurt has already been caused. Sticks and stones may break my bones, and WORDS HURT Mr. Ben Stiller, Mr. Robert Downey Jr, and Hollywood!! My daughter has an intellectual disability and is not able to defend herself because of her age and her cognitive ability. How dare you use her medical diagnosis of mental retardation as an opportunity to put more money in your pockets. Shame on YOU!

The term "mental retardation" is being replaced with intellectual disability because of this misuse. This isn't the first time this has happened. You know those words, "idiot" and "moron." Those once used to belong to people like my little girl as medical diagnosis and we all know what happened to those words. How wrong is it that my daughter needs a new "term" because of the abuse of her medical diagnosis by people of average intelligence? How long until people start taking the new terminology and abusing it as well?

I have an idea....let's just abort every child with a disability before they're born and we won't have this problem! Let's just wipe our world clean of people with Down syndrome, autism, cerebral palsy, etc... and while we're at it, go ahead and take me out of that world, too, because I'm 5'10" tall and that's just not "average!" Everyone with large noses can have their lives spared as long as they get plastic surgery.

My daughter has to fight against this ridiculous ideology that she is "not normal" and "different" and "lucky she wasn't aborted" every day for the rest of her life and I'm going to do everything I can so she doesn't have to fight against the mockery and "harmless jokes" as well!

Race discrimination is off limits (as it should be!) but discrimination against individuals with intellectual disabilities has a green light. ENOUGH! I have usually excused comments that I hear everyday: "I'm so retarded," "what a retard," because I know in my heart they are not intentionally or purposefully directed at someone with an intellectual disability. Well, enough! Intentional or not, stop it! Use it properly or don't use it at all!

Leave my child, my friend's children, and the many individuals in our world who work harder than any of you alone! ENOUGH!!

Newest updates

2008-08-06T15:19:00.002-04:00

Today Vinnie is 6 months old. I can't believe how big he is getting. He is still off the charts for Down syndrome. His little feet now reach past the end of his car seat, when I carry him in it I have to be more careful as to what I might bump into. I have to bring him to get his thyroid levels tested so say a little prayer that everything checks out. On Monday we go back to the audiologist for his ears and of course we are all sick and congested again, never win!

Rudy is singing me a song about going on his big boy potty. He has Vinnie's little 4 key piano, VERY CUTE! So, YES he is potty trained! Woo hoo. We still stick a diaper or pull up on him at night because I really don't want to deal with sheets and bedding right now, he still lets us know he has to go even with the diaper on so it's all good!

Since I have been sick my voice is slowing fading, it's very sexy! I called a bunch of my friends just so they could laugh at me and I could laugh at me too because darnit, it's funny!

Jayson finally got 2 walls framed for his garage, should be about another 6 months until he can get his buddy here for the 2 hours it will take to do the other 2! I am (hopefully) kidding. The garage is going to be GINORMOUS! I think it's taller than our house and the square footage might be larger too.

That's all.

"No offense intended"

2008-08-05T21:49:00.005-04:00

If you end a comment with "No offense intended" you probably should not have said the comment in the first place. "No offense intended" does not excuse your words or actions, it doesn't make it "ok" it just makes you sound like even more of an arse. It's like saying "I know this is going to piss you off to no end and hurt your feelings but I just don't care so here it goes". Blah grow up people...no offense.

17 years...

2008-07-24T10:12:00.002-04:00

Yesterday marked 17 years since Lynn has passed. I grew up with Lynn, I can't remember a time without her in my life until that day 17 years ago. She was like a sister to me, we fought like sisters an loved eachother like sisters. I remember her guinea pig and her barber shop playdough set. I remember her asthma and her machine. I remember her thumb sucking. I remember her love for life and the Lord. I remember the day we went to the hospital and saw her laying there with machines hooked up to her, keeping her alive. I remember her grandmother had her picture and she said she knew how hard it was for me to see her like and that's why she had the picture there, as a reminder of who she is. I never knew death before this, I have never lost anyone before and haven't lost anyone that close since. I think of her often and wonder who she would be now, what she would name her children and if they would be at my house playing with us this very minute.

The day before the burial I had a dream. I was at camp, where I had been when Lynn had her asthma attack, and was walking down the path and there she was waiting for me. I was shocked, I knew she was gone. I asked her what she was doing here. She replied with something bizarre like they needed her arm. But that night, before I had to watch my best friends body be placed into the ground she said goodbye and she told me it was ok. There was a certain peace about the whole thing, I no longer feared for her.

I will never forget the day of her funeral. Lynn was in the Drum and Bugle Corp. and the band was there, playing Taps in the backround. They handed her mother her team jacket and that's when everyone lost it. Her sister dropped to her knees sobbing. There must've been hundreds of people of all ages there saying goodbye. They say only the good die young, it was all to true with Lynn.

I think about her often, wondering...

Mystic

2008-07-23T13:57:00.004-04:00

We went to Mystic this past weekend. We had a great time at the aquarium where Rudy saw bawooga whales (baluga whales), penguins (he can walk like them) and lots of fishy friends. We drove to Misquamicut (spelling?) and got there about 5pm, it was just a joy ride but we stopped to play mini golf, ride on the spinning barrel of monkeys, and play ski-ball to win a whistle and a snake. We left Friday night and returned Sunday afternoon. It was nice to get away.

Nothing else new. Just hanging around in the house because of the rain.

Boston DS Convention

2008-07-13T20:11:00.003-04:00

Sorry I didn't update while I was there but I was so tired by the end of the night and my computer wasn't working there.

AMAZING!! I had such a great time, met so many people and learned a little too. So I will just do this day by day I guess.

Friday: We had nothing planned for the afternoon so we slept late and then went to register at the convention center (across from hotel). After we registered we took a look at the different vendors and got some flyers. We then went for a car ride to find some flip flops for Lucy. We got lost on the one ways in Chinatown and I decided when I saw a sign for the MA Pike I would take that until we could see something that looked like shops from the Pike and then get off. BAD IDEA! We end up in Wellesely and drove forever to find anything and then got lost and FINALLY found Boston again and took forever to get back to the hotel, NO FLIP FLOPS. We arrived at the hotel at 4:45pm and had 5:00pm dinner plans with the people from the online group I chat with. We changed and got there in record time.

Dinner Friday: It was a little crazy having so many kids and adults in a small place but it was a great time. I met briefly with the moms, children and dads who have been such an inspriation and support to me through the past few months. The children were so beautiful and I can't wait until Vinnie is old enough to join in all the mischief.

Friday Night: There was a cocktail/cash bar reception where they honored Dr Crocker and many others. One person that stood out to me was the woman who sent me all the information I needed when I reached out to the MDSC (Massachusetts Down Syndrome Congress). I have e-mailed with her back and forth and she was great to talk to in the first few weeks after Vinnie was officially diagnosed with DS. There was a dance for the young adults and bothers and sisters, we peeked in on that and it was pretty fun!

Saturday Day: We attended a session on speech 10:45am-noon. It was ok, not in depth and mostly things I knew. The we met with some of the people from DownSyn (my online buddies) for lunch. The 3 families knew eachother pretty well but they were very welcoming to us and I appreciated that so much. After lunch there was a little time before the next session at 3:45pm so one mother (and her 11 month old) came back to the room with us (she was staying with family so she was on her own with no place to hang out). She has 2 daughters with Ds. After her first was born the chromosome analysis showed a 21/21 translocation (Vinnie is 14/21 translocation) so her and her hubby were tested and both came back with "typical" chromosomes. So when her next daughter came with a 21/21 translocation it was a little shock. She is a medical mystery and is looking for a genetics specialist to see where this could have come from, obviously not just a fluke! So that was amazing talking to her and hearing her thoughts on future children. He daighter is about the same sizer as Vinnie, I guess he really is BIG for having Ds. We went to another session "New Parents Survival" hosted by Jennifer Graf Groneberg (author of Road Map to Holland) and Kathryn Lynard Soper (editor of Gifts). They did an amazing job but I think it would've been something to look into having the diagnosis new or prenatally. They gave out books so I now have 2 extra copies of Road Map to Holland and 1 extra Gifts.

Saturday Night: This was my most favorite night. We went to the big dinner reception. I sat with my DownSyn friends but I was mostly excited to meet one mother and her daughter (10yrs old) because they have been so much an inspiration not only for me but for so many others. This woman has put herself and her daughter out there to show people that our children are more alike than different. She has YouTube videos that have really saved lives of unborn chidren. The admiration I have for her is huge. She has made me believe that it WILL be ok.

So the weekend was so cool. Along with the above happenings there was that sense of family all around. Everywhere you turned there was one of OUR children. The features like Vinnie's, nobody to stare (not that this happens a lot with Vinnie he's too young). Everyone there knew he had DS and I didn't have that awkwardness when they told me how beautiful he was. The awkwardness of "do I tell them or not". I heard stories from mothers new and old. I met a couple that had just gotten engaged and they just happened to have DS. She was so excited telling everyone and showing off her ring, so typical, so beautiful. A young man with Ds in an elevator ticked off at his mom giving her the "talk to the hand" and brushing his shoulder off when she tapped him, so typical, so beautiful (in my eyes). A young couple with DS walking across the street back to the hotel from the dance, arguing about something. SHe walks ahead and when he tries to talk to her she turns away in protest, so typical, so beautiful. Children of all abilities dancing and laughing together...soon will be so typical and it WILL be so beautiful. I will be looking forward to next years convention for the next 382 days.

We're here!

2008-07-11T00:33:00.002-04:00

I am posting this from Boston Massachusetts. We arrived about 9pm so we haven't gotten to really meet anyone. We ran into two people from the forum I post at but I was in such a crazy place trying to get checked in that we didn't get to chat. I can not get my computer to get online here so I am on Jayson's and hopefully I can post some pictures from tomorrow. So, we're here, we're safe.

Getting ready for Boston...

2008-07-10T01:06:00.002-04:00

Bags are almost all packed up and the anxiety of it is flying all around. We (Me, Vinnie and my friend Lucy) will be leaving tomorrow evening for the Ds convention in Boston. Friday we will meet up with about 30 (?) other families (about 80 people including children) from the Down syndrome I post at. I am VERY excited to meet everyone that has helped me be in the place I am now with Vinnie. AMAZING people really. I have a HUGE bag packed because I couldn't decide exactly what I wanted to wear adn having Vinnie around you always need extra clothes. Only bad thing is I can not find my wallet. I will search tomorrow while Lucy is at work. I guess I could bring my passport to register at the hotel?? Ugh what a pain.

Rudy's funny and other thoughts

2008-07-08T01:00:00.003-04:00

The other day we were driving to my grandmother's house (over the river and through the woods...) when Rudy said "God Dammit". Shocked I tried to figure out what he could've said, surely it was not "God Dammit". I look at Jayson and we both look confused. I asked Rudy "what did you say?" his reply "God Dammit". "Rudy, we don't say that it's not nice". "God damn this cup" Rudy says. I pulled the car over and talked to him and haven't heard it since. Where does this boy get this stuff, surely not from his truck driver mouthed mama.

Why is it 1am and I am still awake? Because the vicodin I took 5 hours ago hasn't dulled the sound of Vinnie snoring. We're sick again, well the boys are. I am pretty sure that I will get sick sometime Thursday just in time for the Ds convention in Boston.

I may be getting tired so maybe I should quit now.

Hmm

2008-07-08T00:04:00.002-04:00

Sometimes I try to relay my feelings and don't mean to come off the wrong way but I do. Thanks for the heads up. It was outta love really.

Viewing my blog?

2008-07-06T18:41:00.004-04:00

I am so new to blogging so I am sure there is some way to see who is looking at your blog beside the "Livefeed" thing I found but I don't know what that would be. Anyway, through the live feed you can see the area in which the person reading is from and how they got to your blog. Most are from my favorite forum EVER but I also today saw one through Google, searching for Echogenic Focus. So I wanted to write a little to the people who are searching for answers, who are scared and who are lost in finding out that their child may have Down syndrome or some other chromosomal abnormality.

First off, congratulations on your upcoming or recent arrival. Your child will amaze you, "typical" or not. You are probably scared, I've been there. I may be new to this but I have found that most of us have the same feelings. Obviously you are searching for information, for hope. I too searched the internet into the wee hours of the morning. Not fun and some of the stuff you will read...OH MY! NDSCCENTER.ORG is the National Down Syndrome Congress website and they have great UPDATED information, so much out there is outdated and scary. There's also many parents out there waiting to tell you all about their wonderful children and lots of blogs out there too. I have found that most people who have children with Down syndrome are so approachable and are more than happy to help you understand DS and most of us are here to listen to you vent, remember...we've been there. Most people don't say "Hey, I think I would like to have a child with a disability" so anger and disappointment is normal and common. I welcome you to reach out to me if you'd like and I can help with whatever I can and share the wonderful sites I have found that have helped me. You're NOT alone.

Violated

2008-07-03T20:25:00.003-04:00

There's a very special place that I post. It's a place I found right after Vinnie was born. I have a whole family in the cyber world that I have come to trust and love. I've only known them for nearly 5 months but I have seen their children grow, shared sorrow and tears, rejoiced in accomplishments, prayed for heeling and comfort, and congratulated new(er) parents. Of course all of the people at my very special place are parents or close relatives of someone with Down syndrome.

Before I joined this new family a young pregnant lady had joined. She selected the name ScaredMomma. Ok, kinda corny but I get it. She was to have a baby girl born with Ds. The baby came early and stayed in the NICU, we gooshed over pictures of this precious life hanging onto life. The baby came home and we rejoiced with her. The baby went back to the hospital with RSV and ended up they found a mass on her liver, CANCER. She and her boyfriend decide that they will not seek chemo as they don't want to pump her itty bitty body. Wow, ok that's sucky. I shared this post with my sister and we cried because who wants to have to make that decision?

Yesterday I log on to check in on my new family, to read of a little one's operation results and updates and find this...

Many of us have traveled with ScaredMomma as she described the recent premature birth and health issues of her child. We have recently learned that this story is a fiction. As far as we can tell, there is no child named Jaslene. The pictures that ScaredMomma posted on our forum, on the place we rely on to honestly discuss issues with our fellow parents, were stolen from the blog of a new mom. She is naturally shocked and is very upset about this. We have no idea why ScaredMomma made up this story but she has broken a trust that we have with each other and her account has been closed and she has been banned. We will be going through the process of removing the pictures from all of her posts and deleting topics that she started.

We would especially like to thank the members who uncovered this story and let us know. I don't have permission to share their names.

To everyone, please don't let the lies told by this person ruin your faith in people. We have a great family here and I would hate to think that this one person could make us lose our trust in each other.

RAPED...I feel RAPED. I am going to church because I feel like I belong and it's something new for me and this past Sunday I actually prayed for this baby, Vinnie and I looked into eachothers eyes and I whispered to him each person we prayed for. This is the open prayers for different things (not sure the proper name) pray for those who are ill and then you insert names. I said Jaslene and grampa to Vinnie. This was a big step in my little world of religion and I feel like I wasted it on a fake, if that makes sense. I am happy though that this has opened my eyes and heart even more to the wonderful new family I have become a part of.

Afraid of...

2008-06-30T19:58:00.002-04:00

Recently Jayson and I had a rough spot and he told me that he thought Vinnie was getting all my attention. This is true when Jayson is home because he is there for Rudy but when he is at work and it's just the 3 of us Rudy comes first. But that got me thinking about it for a while and I came to the conclusion that I think I need to spend MORE time with Vinnie because I am afraid. I am afraid that Vinnie will develop some crazy thing that goes along with DS and the moments I have with him are going to be short. I know it's crazy to think that way but I do sometimes. I have also been sleeping in a single bed in Vinnie's room which was another Jayson complaint. But every noise that Vinnie has makes me jump and at night some noises are scary and again I think that will be his last breath. So there it is, I am afraid.

On another note my back hurts so bad I am contemplating having some kind of injections and then surgery. The only thing holding me back is the kids because I am sure I would be laid up for a while. And probably won't be able to breastfeed after I am pumped full of drugs. It HURTS BAD!

Picinic and other news

2008-06-21T17:33:00.003-04:00

Today was the Down Syndrome Resource Group picinic. I don't think it could've been better weather, not too hot or cold. My mother and step-father, sister, gram and grampa, my friend Becki and Jayson's mother and her boyfriend came with us. We all had a good time. We got to see Riley again and we met many other children with Down syndrome and their parents. There was a bounce house, a bouncing horse racing thing, pony rides, ding dong cart (ice cream cart), lunch, and a DJ. All the kids seemed to really enjoy themselves. Rudy was a bit grouchy and of course Vinnie is too small for all the fun but next year should be even better!

Vinnie is starting to babble a lot. The longest times of course are in the middle of the night when I go to bed later than I should. He is doing so well and makes us so happy, everyone just loves our boys!

We have a few new additions to our family, not really but we have seen a doe and it's fawn, lots of bunnies, and the gopher that lives under the shed has sprouted at least 2 babies this year. And lots of birds or course.

If you haven't already heard, the rumor is that the next Down syndrome convention will be held in California. Hopefully we will be able to rent a house and have a family vacation out that way. Woo hoo!

That's about it.

A Wordless Wednesday...

2008-06-18T22:27:00.000-04:00

Finally NOT sick?

2008-06-16T22:02:00.002-04:00

I think it may be the end. I have a nasaly thing going on still but I think I may have some kind of infection. I won't go into detail about it because it could get pretty gross but if it doesn't clear up by the end of the week I think I shall call the doctor.

Wii are now Wii owners. If you don't know what the Wii is go look it up. We also got the Wii Fit which is totally fricken cool! I am going to have to take a video of Jayson and his friends playing Wii bowling because it's HILARIOUS! He was all against the Wii and now he LOVES IT! I guess Wii will have to have a Wii party some time.

Ciao for now.

THEY

2008-06-16T14:09:00.001-04:00

This just seems to fit perfectly into our situation right now...thanks to the mom on Downsyn!!

THE HOUSE OF THEY
Author Unknown

Have you heard of the terrible family They,
And the dreadful, venomous things They say?
Why, half the gossip under the sun,
If you trace it back, you will find begun
In that wretched House of They.

A numerous family, so I am told,
And its genealogical tree is old;
For ever since Adam and Eve began
To build up the curious race of man,
Has existed the House of They.

Gossip-mongers and spreaders of lies,
Horrid people whom all despise!
And yet the best of us now and then,
Repeat queer tales about women and men
And quote the House of They.

They live like lords, and never labor;
A They’s one task is to watch his neighbor,
And tell his business and private affairs
To the world at large; they are sowers of tares –
These folks in the House of They.

It is wholly useless to follow a They
With a whip or a gun, for he slips away
And into his house, where you cannot go;
It is locked and bolted and guarded so –
This horrible house of They.

Though you cannot get in, yet They got out,
And spread their villainous tales about;
Of all the rascals under the sun
Who have come to punishment, never one
Belonged to the House of They.

You'll find friends where you never thought...

2008-06-11T23:48:00.004-04:00

I forgot exactly where I read it, probably on a forum for parents of children with Down syndrome but today I felt it. OUCH. It read something like this.

You'll find friends where you never thought you would and also LOSE friends you never thought you would.

I will one day find it and post it correctly. But it wasn't so much a sad day but a reflection day. No matter how much you try to make people understand some just won't.

Mothers Lie

2008-06-11T23:45:00.000-04:00

~~~ Mothers Lie ~~~
By Lori Borgman

Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more.
She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.
She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).
Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.
She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.
Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close.
The doctor's words took your breath away.
It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.
It didn't seem possible.
That didn't run in your family.
Could this really be happening in your lifetime?

There's no such thing as a perfect body.
Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.
Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it.
Sometimes you mothers scare me.
How you lift that kid in and out of the wheelchair twenty times a day.
How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.
You snap, you bark, you bite.
You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling,
"Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you. From where I sit, you're way ahead of the pack.
You've developed the strength of the draft horse while holding onto the delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.
You're a neighbor, a friend, a woman I pass at church.
You're a wonder.

I have been writing this for a while and recenlty added the last paragraph last week

2008-06-08T12:10:00.000-04:00

It all starts before I got pregnant. I have PCOS (poly cystic ovaries) and conceiving proved to be a problem. Rudy was our first IVF miracle and we are hoping for another. When we left the hospital after egg retrieval I felt horrible but we picked up Rudy from Memere’s house (where Jayson got a bucket for me to vomit in) and went home. A friend was there waiting to be with me for the day. I vomited as soon as we pulled into the driveway. We got in the house and I laid on the couch in the fetal position, got up to use the bathroom and almost passed out. Back to the hospital I go. I was in pure agony. They brought me right in and had me lay down for a blood pressure and sit up for one. I sat for a second and nearly passed out. My blood pressure was some crazy low number I think one number was in the 30’s but both were under 100. It was time to get put under and look at what is going on and it’s time NOW. Well, my ovary tore and I was bleeding internally. By the time they got in there it had healed itself. All my embryos would be frozen until I healed and the doctors have made it clear that they don’t want to see my ovaries again, I have always been their problem child.

We’re pregnant two months later. We didn’t have any early tests except the quad or triple screen (and I didn’t even know we did that) because it’s my child no matter what. And truthfully, look at Rudy how could I have a baby with a “problem”?

We wait and wait for our ultrasound and the day arrives. Rudy, Jayson, my mom and I all pile into the exam room to find out if Rudy will have a brother or sister. Rudy is restless, the ultrasound technician tells us “looks like a boy”. Rudy had enough by this point so grammy takes him outside. Jayson offers to go be with them but the technician stops him and says he needs to be with me…I get a very uneasy feeling but it faded as the ultrasound went on. The ultrasound is over and the technician makes sure we see the doctor before we leave, she says that I have a partial placenta previa and there is an echogenic focus on the heart but it does not mean there is something wrong with the heart. Jayson and I wait in the waiting room for the doctor to see us. We go back to an exam room where the doctors tells us that having an echogenic foci puts the chance of having a baby with Down syndrome up by about 1-2%. But they see it more often in children without Down Syndrome, we get information about it and have an appointment with the genetic councilor and to have a level II ultrasound. We leave the office with some shock and uneasiness. We tell my mother and we try not to think about it too much because it seems the chances are very slim. We talk about it for the days to come before our Baystate appointment and we have always said it’s our child no matter what. I research the crap out of the findings and Ds and I feel ok. At the next ultrasound they find that Vinnie has some extra fluid in his kidneys but again, this is found more in boys than in children with Ds. They offer the amnio but I decline, too much a risk for me. They do a couple ultrasounds before Vinnie’s due date just to keep an eye on the kidneys. No other problems. I stop the research and decide that I want to enjoy my pregnancy, not worry about something I can not change.

The people from Direct TV are coming out to hook up our HD satellite. Jayson is home waiting for them and I am getting up with Rudy to start the day. I am having a few contractions that are pretty strong but not steady but I decide to send a text message to my friends and family about them. Jayson is starting to think this is it and wants to cancel the Direct TV. I am in denial. We found out yesterday that Jaysons cousin, about 26 weeks pregnant, went to the ob and they couldn’t find the heartbeat. She will be delivering her still born baby today. I don’t want this memory for either of us. The contractions stop so I send another text about how they stopped. I take a shower and get dressed. Contractions are starting again but are far worse than earlier, Jayson has decided that this is it and times them. I am still in denial, to the point where I am telling him that my face of pure pain is not really a contraction. He states that I am having contractions and they are getting closer. He wants to call his aunt to come watch Rudy. I say “NO, they have to be 1 minute long 5 minutes apart for an hour before we can call the doctor”. They are clearly getting stronger and closer and Jayson is calling people to tell them I am in denial but we are indeed having a baby today. I am in pure agony now and decide that his aunt should come and we should call the doctor and also let‘s cancel that Direct TV guy. “They want us to go to the office” Jayson says. Auntie Mary is on her way. It seems like forever and I am in the bathroom screaming when the contractions hit, they are now about 3-4 minutes apart and getting closer. “She’s here” Jayson says from the living room. I pull myself together enough to get myself out the door and into the car. I didn’t say goodbye, I don’t care! “Watch where your f*cking going” me “will you get off the phone and pay attention to the road the bumps hurt” me. Jayson calls the doctor and says we should probably go right to the hospital, they agree. We pull up to the valet parking and I breathe through another contraction before I can get out. We walk through the door and then I stop, I can’t walk anymore. Jayson asks the lady at the desk for a wheelchair and one lady wheels me as the other runs ahead to press the elevator button. When we get upstairs Jayson pushes me to the delivery rooms. The nurses take over and wheel me into my room. “When you can take off all your clothes, put these on and get into bed” says the nurse. I think “you want me to do what?”. Finally after a couple contractions I get all that done. The doctor asks how far apart my contractions are, I can’t even answer. The nurse answers “they were about a minute apart when she was wheeled in”. The doctor checks my cervix “about 4cm, do you want an epidural?” I answer “OH YEAH!” I breathe through many more contractions and then saint anesthesia man came. Moments later I am miss chatter box and everyone makes fun of me. Doctor checks and it’s time. 2-3 pushes and Vincent Adam is born. He is 8lbs 7ozs and 21 inches long. I look at him and know.

Jayson’s mom is at the hospital just a few moments after Vinnie is born. Jayson says, he doesn’t look like he has Down syndrome. I just say “ok” because I haven’t yet told him what “I know”. He looks at me and asks “you see something” and I tell him what I see. I ask the nurse about who would check his kidneys but never mention the ultrasounds and the markers for Ds because I just don’t want to officially know right now, I want to enjoy my baby. Vinnie is taken to the nursery to be cleaned and warmed and looked at. “I’m on the fence, I just can’t say for sure” the doctor says about Vinnie’s Down syndrome, the blood test is ordered.

We have a rough time in the hospital, Vinnie has a couple problems with oxygen levels and one time he turned blue. We are transferred to Baystate’s NICU where they babysit for 2 days. The night before Vinnie came home the doctor came over to tell us about the echo of his heart that they did earlier and some other tests and it went sort of like this “the echo of his heart looked fine and the ultrasound of his kidney looks ok but one test did come back positive and that was his Trisomy 21”. I can’t quite explain the feeling of those words but I can say that I still get choked up when I repeat them and I still have one tear roll down my cheek. I knew, I knew all this week while we were waiting for Vinnie to come home. I knew it was positive so why now did my heart fall out of my chest, my legs go weak, I can’t catch my breath and there’s a huge lump in my throat. Jayson holds my or maybe rubs my back and the doctor says “I’m sorry” and tells us to take all the time we need with Vinnie. We explain we were just leaving and she feels bad for delivering the news now. I think I composed myself so that we could walk out of the NICU with dignity, so no one “felt sorry” for us as we left. All the nurses and maybe a doctor or two were gathered at one of the desks inside the NICU. It was almost like they were huddled together so they wouldn’t have to deal with us or they were getting filled in as to what just happened over Vinnie’s plastic tub bed. I make it a point to smile the whole way out and say goodnight to them as I pass by, it was my way of saying don’t pity me I have a wonderful gift waiting to come home.

Everyone says that I am in a “good” place. I think it means that they can’t believe that I am not depressed or upset about Vinnie having Down syndrome. I am PISSED OFF that he has Down syndrome and I am depressed in some ways, it’s not fair, it SUCKS and I hate it but that doesn’t help or change anything. Vinnie is first and foremost Vinnie. He smiles and it changes my whole day. I have fears and I worry and some days I want to run away and hide.

Almost everyday Rudy, Vinnie and I go on a little driving adventure. This adventure is for my own sanity, we go to Starbucks for a coffee and sometimes a donut or muffin and then drive a little bit while Rudy sleeps. This is the time I contemplate what has/is going on in my life. Today I thought about what it was like to work as a service technician, it’s a “mans” job and I was probably one of 3-5 females that worked for the company that is nation wide and extends into Canada too. The first year or two working there was a constant fight to show people I could do what my co-workers could do and sometimes much more efficiently. I walked through doors to only hear “are you sure you know what you’re doing?” and of course I responded “well, maybe not. I might have to order parts or maybe call someone…should be about a month before we can get it figured out” that statement stopped the comments. So I drove around today thinking about the minor struggle I had to “fit in” to show them I was capable. Maybe it is because of the life I have already led that I am so accepting and ready to dive into any situation with my Vinnie (and Rudy too). I’ve been there, I’ve had to fight and I am willing to do it again.

We are sick...

2008-06-07T23:25:00.002-04:00

The two little guys and I are SICK! I feel so lousy I can just imagine how Rudy and Vinnie feel. I can't breath outta my nose and I am not sure I can take anything because I am nursing. Gotta look it up after. So, nothing to say right now because I just want to crawl under the covers and sleep!

Dear Vinnie, today you are 4 months old

2008-06-06T08:27:00.000-04:00

Dear Vinnie,

Today you are four months old. You have surpassed every expectation I had of you when you were born. I should not have set my expectations so low, I failed you in that and I am sorry.

Today I want you to know that I will be expecting nothing but you trying your best. You have worked so hard to accomplish things already. You amaze me and daddy all the time. Your laugh is infectious as is your smile, I look forward to you waking up everday because you smile so sweetly at me.

I am so happy you chose me to be your mommy. You have already shown and taught me so much. You have opened my eyes and my heart to so many new things. I know that as you grow you will touch so many peoples lives. You already have your family wrapped aorund your little finger and I suspect that the people at church are feeling this too.

Thank you for coming into my life, I love you.

Mommy

Baby book blahs, a pity party for one...

2008-06-05T23:19:00.001-04:00

I tried to write a few things about what Vinnie is doing now, cooing and such, in his baby book. I guess I haven't written in it since the day after he was born. Basically it has some stuff from when I was pregnant like "My dreams and hopes for you are..." and it also has the date he was born with the weight and height. So I tried to fill in some other stuff but got really pissed. "My thought when you were born were..." I thought "Wow, you have Down syndrome". I could go on with the list of things it wanted me to fill in and I have two books for him so it's double but I will just say most of the answers were "Down syndrome". I wasn't all upset about it when he was born. I knew the moment I looked at him and I was fine with it. So it wasn't a bad thing but I don't want to put that in his book.

So by now you are saying "write what you felt second, after the Down syndrome stuff". I couldn't, I got caught up in my own little pity party. Then I had HORRIBLE feelings that I am ashamed of "he won't ever read it, so why bother". What a scumbag mom!

But on a happier note I did read the "My dreams and hopes for you" section that I had filled in when I was pregnant. I am happy to report that my hopes and dreams haven't changed much. Basically I said I wanted him to be happy, no matter what he does in life just be happy (I remember my dad once told me that if I wanted to be a garbage woman he was ok with that as long as I was happy. That was probably the only thing I remember him saying, well, only good thing). Treat others with respect and if he chose to have children give them unconditional love (this was a little hard on me since they say that males with Ds can not reproduce...no mini Vinnie's).

Now that I have caused most of my family and possibly some of my new "Ds" family a little concern I will sign off. I am ok, I just needed a little vent. No need to check in on me.

Wordless Wednesday

2008-06-04T22:18:00.000-04:00

99 Balloons

2008-06-03T08:54:00.001-04:00

I sent this video via e-mail some time ago. I got a lot of "why would you torture yourself by watching that?" comments. To me it is sad but gives me strength. I didn't know the family had a blog. I didn't read much past the most recent post, apparently they decided to stop blogging last year and have just started again because of some VERY exciting news. Yes, they are pregnant and they also have some other great things happening in their lives. Check it out.

http://www.ninetynineballoons.com/

And if you didn't see the video it is here. I could only watch it the one time so far. I will watch it again when I need encouragment and strength, what an amazing family.

http://www.ignitermedia.com/products/iv/singles/570/99-Balloons

I can't say anything more that would top the above story so that's it for today and tomorrow is wordless Wednesday.

The weekend

2008-06-01T22:38:00.000-04:00

We spent the weekend up at Norwich Lake. I think I drove more in the past 2 days than I do all week. We went up late Friday night, came home Saturday afternoon for more supplies and food. I then remembered I was to go to my grandmother's for dinner so Vinnie and I make the trip back down for dinner and then Sunday I came down AGAIN for church. By the way the church throws a Starwberry dinner thing every year, this year it is Thursday the 19th...YUM.

I'm pooped. Goodnight.

http://davehingsburger.blogspot.com/

Mainstream/Special needs classroom

2008-05-29T07:56:00.001-04:00

At the most recent Down syndrome resource group meeting I met a woman my age that has a daughter with DS who will be starting kindergarten this fall. I actually went to school with her but we didn't hang out together (she must ot have been a partier). She was talking to one of the mothers at the table Jayson and I sat at and explained that the school district was trying to put her daughter right into the special needs school. This is something I hear about ALL the time on the DS forum. I have learned that it is so much better for our children to be mainstreamed because frankly, to be in a classroom with all special needs students their little minds aren't being tapped for their full potential. Not all people with DS are severely retarded, most are in the low to mid range and maybe some not at all (according to their IQ's). SO fight, fight, fight once again for our babies to belong.

Fast forward to last week when Jayson and I met up with a couple we know. We talked about Vinnie and Rudy and school. I knew this woman worked in the school district I just spoke of so I went on to tell her about what I heard. She said she heard of this case. She also went on to say "sometimes it's the severity", this is where I get to put in my two cents and advocate for this family. Can you tell I am proud? Anyway, "why not try it, if it doesn't work being mainstreamed it's always easy to change it. It's much harder to go from bottom to top than it is from top to bottom. Why not try it?". I truly think she "got" it, so I am hoping she went to work the next day and told the story of the night before. I might add that this woman has a handicap of her own.

I think I broke my toe and other random thoughts...

2008-05-28T21:35:00.000-04:00

I tripped over Rudy's animal hospital kit and my toes hurts, a lot!

I had Vinnie sitting on my lap facing me while I supported his trunk and he looked at me for awhile but then decided that his feet were more intriguing. He then talked to them for a bit with his lips pursed, it was pretty darn cute. He is doing very well with his gross motor skills. He will: while on his belly push up onto his elbows and sometimes almost straight armed, rolls from belly to back, roll from a side laying postion to belly and get his arms postitioned correctly to lift up his trunk (this is new so not as often), on his back he reaches for things (sometimes), on his back he does a lot of moving and spins himself about 1/2 way around, track objects like a champ, sit while supported for a fair amount of time, bears weight on his legs a little and today he tried to takes steps when the OT (occupational therapist) let him bear weight on his legs. His head is still al little floppy at times but heis doing so well.

Apparently on "So you think you can dance" tonight there was a gentleman with Down syndrome. He didn't make it through but I hear he made a little speech at the end about how it's not always about winning and that he did this so people could see that people with disabilities CAN do things like the rest of us! BRAVO Mr. Whomever you are, BRAVO!

Then I hear in Australia they have a show similar to ER and the most recent episode showed a teen pregnant with her brother's baby and that the baby might have Down syndrome. Yuck, way to go let's make everyone think that DOwn syndrome is caused by incest! One of the posters on the Down syndrome forum I frequent already had their daughter approached about it...shame on you Aussie channel!

I am going to every once in a while post a website or blog that I LOVE and today is Daniel Drinker's DanDrinker.blogspot.com I LOVE THIS KID AND HIS LITTLE BROTHER!!!

Welcome...

2008-05-27T22:23:00.000-04:00

I decided to let everyone know about my little blog here. This will eleviate the constant e-mails about Down syndrome and/or other things I feel everyone needs to know about. This way you can look if you want...although I think you should, it's good for you. I mostly hope that this blog will help you understand: Down syndrome, the effects it has and will have on us, our feelings, our fears, our thoughts. Welcome to my world, tread lightly please.

And to end I want to say that I am no writer and my grammar is probably all wrong, no need to leave comments about it (Karen) but feel free to let me know in a quick e-mail or in person.

Mom Brain!

2008-05-04T02:55:00.000-04:00

The boys get baptized on May 11th, Mother's day! The godmother and I are suppose to meet the priest at the church Monday at 11am. Rudy is starting a playgroup, as a peer, Monday 10-12. So obviously there is a conflict here right? It's 11:55pm on Saturday night and I JUST realized it!! So before I forgot I sent both the godmother and the priest a quick e-mail explaining how I am a complete flake right now.

Tomorrow is the MS walk. My friend Rebecca has MS. I think we have known eachother forever, her sister and mine (older than us) are the same age so they went to school together and maybe Girl Scouts too. We knew eachother before kindergarten and were in the same class from K-5. She's pretty amazing, I'm not sure she realizes it though. Anyway, it looks like rain tomorrow and that means we won't be able to go because I can't bring the kids out for a long walk in the rain!

Last night Rudy (and us too) met Riley. Jayson and I met Riley's parents at the Down syndrome resource group meeting last weekend. Riley is 4 and AMAZING! She just recently learned to walk, is super smart, she knows who the speaker of the house is!! I don't know that!! Sometimes her speech is a little uncomprehendable but you ask her to tell you again and she will as many times as you need it. Rudy LOVED playing at Riley's house. I thought for a second he noticed something different about her but he just played away, I hope that acceptance never ends! We can't wait to spend more time with Riley and her family.

I guess that's all for now.

From April 26th, 2008

2008-05-02T09:19:00.001-04:00

Saturday, April 26, 2008

Random thoughts, scattered.

Current mood: Overwhelmed

Category: Overwhelmed Life

I'm feeling overwhelmed, overtired and so over this stupid Down syndrome. Everyday I thank God for my sons and the fact that Vinnie so far doesn't have any health problems. But the future for him overwhelms me sometimes and I feel selfish for wanting a life outside of him and his disability. I try to see him as just a baby but the fact that he does have Down syndrome flutters its way into my thoughts everytime I look at him. I am not saying that it's a bad thing but I have been trying to not see that and when it flutters on into my brain I try to push it out. I belong to a little online Down syndrome group and everyone is wonderful and someone once said, to either myself or someone else beginning their journey into this unknown, that eventually we will just see our child and wonder why people might be looking at him and then remember that he has Ds. I can't see that happening, does that make me a bad mother? I love him with everything I have and I wouldn't change him, he is perfect. But society, SOCIETY IS CRUEL! How could I not see the Ds when I will be worrying all the time about how people will treat him? And what about Rudy? I already feel guilty for doing routine baby things with Vinnie, feeding, diapering. What about when therapies are going on full force or if a health problem arises? The reality is we will have to work with and spend more time on Vinnie. OVERHWELMED.

From April 17th, 2008

2008-05-02T09:14:00.000-04:00

Thursday, April 17, 2008

An apology...

Current mood: ashamed

I have a friend who had a baby not long after Vinnie was born. I said congratualtions and that has been about it. I hope she understands that I love her more than anything and I am so happy that you has this new baby in her life. I also hope that she understands that right now all I can do is say congratulations, I can't bring myself to do much more right now even though I want to look at all the pictures and ask about the baby. I am being selfish but I know/hope that my friend will still be there when I come around. So here it is, how I feel.
I will start off with the essay that I am pretty sure I have posted before.

Welcome to Holland

By Emily Pearl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this.....

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very significant loss.

But…if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

So, you see. I feel left behind. I am in one country and you are in another. We were suppose to make this trip to Italy together, we were suppose to be able to talk about the sites and future visits. We were suppose to compare notes. So, here I am stuck in Holland and it IS beautiful here and I wouldn't take Italy now even if I could. But, the loss of Italy still hurts and will for some time. While I love you and your baby I hope that you understand that right now I am in my own little world of Down syndrome and I will soon pop my head out to say hello but for now, understand that I am here in Holland and you are so very far away in Italy.

From April 13th, 2008

2008-05-02T09:13:00.001-04:00

Church...4/13/08

Current mood: grateful

At church today the woman who has a 40yr old son with Ds came up to me and asked how the baby was doing. It was that tone that we use when we know about the Ds but don't come out and say it. I reply that he is doing very well and she asks if I have got in touch with the resource group and made the first call (basically, other parents make themselves available for support and questions). I broke down and answered yes. I broke down more because of all the people out there that are supporting me, making me feel welcome and calming my fears. She apologized for approaching me and I said to her that I am glad she came over, that I was just emotional. She said "I know, it was 40 years ago" and points to her son. Her son meanwhile is looking at me, wondering why I am crying. He asked why and his mom and I both just said it's ok I am ok. He asks where my husband was (home sick with Rudy) and then asks if I needed a hug. I said "yes, I would really love a hug right now". Why are hugs so frowned upon? People need hugs! I don't want to have to teach my son that sometimes hugs are not appropriate. Hugs are great!

From March 31st, 2008

2008-05-02T09:12:00.001-04:00

Monday, March 31, 2008

Three things/feelings I will NEVER forget
Current mood: blessed

1. When Rudy was about 3 months old we were living at my mother in laws while we fixed up our new home. We went out shopping, starting at Bed Bath and Beyond where Rudy got cranky (he was a colicky baby) so we held him until he fell asleep and then back into his car seat that snapped into his stroller. Next stop was mattress shopping at Bob’s (Bobopedic!!), we got there and as I was getting the stroller out, Jayson was getting the car seat. I heard a coconut hit the ground and immediately knew it was my son. We never strapped him back into his car seat, he had blankets over him and it just never happened. We jumped into the car and raced to Baystate Hospital, jumping curbs, blowing lights and going into oncoming traffic to get there. He had a fractured skull but nothing else and was fine. So, number one is the sound of my sons head cracking on the asphalt. It replays often and my body shakes everytime.

2. Vinnie, 4 days old. We were still at Cooley Dickinson Hospital and he was in the nursery with oxygen hooked up. I was rooming there (thank goodness they have that option!) and they were calling me when it was time to nurse him (if I wasn’t there already). So on February 9th about 11pm I was called, I peed and set off to the nursery where upon turning the corner I see all the nurses running towards the side of the room where Vinnie was (he was there usually by himself, no other babies on that side) and them yelling to get the doctor stat. A pure panic had obviously overcome everyone and before I could get into the room to see my son a nurse rushed me into my room and basically left me there. I walked out into the hallway after frantically calling my husband to rush to the hospital. I was numb not knowing what was going on with my newborn son. That feeling is 2, I will never forget the helpless feeling, not knowing if my newborn baby was going to live.

3. At Baystate, Monday February 11th. It was about 9:30 pm, Jayson and I were getting ready to leave the NICU to get Rudy and head home. The doctor came over and went over the echo of the heart that they had done earlier along with other tests. She explained that everything went well and then went on to tell us something like this "there is one test though that came back positive and that was his Trisomy 21..." at that moment my heart sunk, I knew he had Down syndrome but to hear it was something totally different. I still cry when I hear it in my head, I am crying now...one single tear falls for the son we expected, the "perfect child". But that is all that will ever fall because, he is perfect. Every extra chromosome in his body is perfect. His flabby neck known as the nuchal fold is perfect. His little, lowset ears are perfect. His low muscle tone body that is so warm right now in my arms is perfect. And when he gets older and reaches any milestone at any pace it will be perfect, just the way it was meant to be. So, 3 is that feeling of finally finding out what I already knew, the words spoken by the doctor that cut so deep with such pain but lasted just a few moments.

2008-04-30T19:19:00.000-04:00

I guess this is it, I am now an official BLOGGER. I have had a MySpace blog that I add too sometimes, I will repost my writings from there onto here eventually. But for now, HELLO WORLD.