Monday, December 15, 2008

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

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.

Sunday, December 7, 2008

Exciting News!

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!!!

Wednesday, November 19, 2008

Thanksgiving...

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!

Thursday, October 30, 2008

Why do we ALWAYS have neighbor issues?

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).

Wednesday, October 29, 2008

Rudy finds out Vinnie has DS...

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...

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Monday, October 27, 2008

Our first Buddy Walk...

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Our T-shirts
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Vinnie's sweatshirt (arms of it)
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Vinnie's sweatshirt (back of it)
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Ahh...just in time for the Walk part!!
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And the after party...tennis anyone?
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Uhm, Jimbo? It's only a game!
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A thank you!

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.

Wednesday, October 22, 2008

Western Massachusetts Buddy Walk

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

teamflash4u.blogspot.com

Thursday, October 16, 2008

Life happens...

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

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.

Friday, October 3, 2008

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

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

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!!!

Thursday, October 2, 2008

Early Intervention Evaluation

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!

Tuesday, September 30, 2008

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.

Sunday, September 28, 2008

Reality?

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.

Thursday, September 25, 2008

Random

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

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.....

Monday, September 22, 2008

Memories

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.

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.

Sunday, September 21, 2008

as if the sucker punch wasn't hard enough

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,

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.

Friday, September 19, 2008

Monday, September 15, 2008

Tiffany!

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!

Friday, September 12, 2008

Conversations with Rudy

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!

Thursday, September 11, 2008

Big E!

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.

Wednesday, September 10, 2008

Dear....

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.

Friday, September 5, 2008

Update on today.

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.

Thursday, September 4, 2008

Tomorrow

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!

Wednesday, September 3, 2008

Guess what...

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".

Monday, September 1, 2008

Wednesday, August 27, 2008

Pray pray pray...PLEASE!?

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!!

Monday, August 25, 2008

A late night thought

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

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!

Monday, August 18, 2008

Bloggings of an insomniac

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

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!

Monday, August 11, 2008

Rudy's Potty Time and Vinnie's ears

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!!

Friday, August 8, 2008

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

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

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.

Thursday, August 7, 2008

Amen Sista...RE: Tropic Thunder

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!!

Wednesday, August 6, 2008

Newest updates

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.

Tuesday, August 5, 2008

"No offense intended"

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.

Thursday, July 24, 2008

17 years...

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...

Wednesday, July 23, 2008

Mystic

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.

Sunday, July 13, 2008

Boston DS Convention

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.

Friday, July 11, 2008

We're here!

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.

Thursday, July 10, 2008

Getting ready for Boston...

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.

Tuesday, July 8, 2008

Rudy's funny and other thoughts

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

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.

Sunday, July 6, 2008

Viewing my blog?

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.

Thursday, July 3, 2008

Violated

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.

Monday, June 30, 2008

Afraid of...

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!

Saturday, June 21, 2008

Picinic and other news

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.

Monday, June 16, 2008

Finally NOT sick?

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

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.

Wednesday, June 11, 2008

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

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

~~~ 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.