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Today is World Down Syndrome Day! The day we celebrate that wonderful population who happen to have 3 copies of the 21st chromosome (ergo, 3/21).

There are certain moments in your life you will never forget. Certain phrases you hear that you will never forget. One of the most powerful I heard was the morning of November 27, 2000, when a nurse sat next to my hospital bed and said, “he [my Jakey] has some characteristics which are consistent with Down syndrome.” I was holding my newborn son, knowing he was about to go to NICU due to pulmonary hypertension. I heard little after that. I remember crying softly but worrying that a hot tear might fall on his face. My older son, then 15, already knew, apparently, as he had heard the nurse and doctor talking about it right before they approached my bedside. He told me later he had turned the video camera off, worried about how I might take it. (I have great sons, if I do say so myself.)

When my little guy was born, his enhanced chromosomal count was a surprise, (I had chosen no genetic testing). Certainly not a happy one. I have never been more scared in my life. But I have also never felt more fiercely and protectively in love than I did that day — and every day since.

As he spent 2 weeks in NICU, at times gravely ill and not knowing whether his PDA would close without surgery (thankfully, it did), I read — to him, about him, and I sat and waited. Waited. Prayed. Worried. And worried some more. Learned about all the awful things that might happen to him.

Now, 10 years later, the vast majority of them have not happened. So if I had one thing to tell a new parent today it would be to *try* not to think too far ahead, and remember that not everything that could go wrong will. It rarely does. And most importantly, the joy, happiness, accomplishments, and love you get from having a child with Down syndrome far outweighs the negative. By leaps and bounds!

And to those who know someone who has a new baby with Down syndrome, please do one thing, if nothing else: say “Congratulations”. It did not hit me that no one had said that to me for about 24 hours until the President of our local Down Syndrome Association did the next day when she called my hospital room. Another phrase I won’t forget: “I hear you had a beautiful little boy — congratulations!”

And I remember in the packet that the hospital social worker brought me, the following poem, well known to my Down syndrome friends, was included. I cried when I read it then, and I cry when I read it now. And I can’t put it any better than Ms. Kingsley does, so I share it now, in honor of  World Down Syndrome Day.

WELCOME TO HOLLAND

by Emily Perl 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 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.

Self-Centered1We probably all know someone who lacks self awareness. Perhaps it is even us. But lately, I have really wondered what it would take to make someone who is self centered become self aware.I think to a large extent, it is human to be self involved. And we have probably all, myself included, had “It’s all about me” moments. But there’s a line — do those who cross it even notice?

I imagine a world where snobbish behavior admits it is simply poorly masked insecurity. Where one can make themselves look good without bashing people who don’t think like they do. Where not having a clue becomes having insight.

I am working on mindfulness, serenity and seeing that which is right in front me. I have a long way to go. It is great to live, to be, in the moment but some moments leave me shaking my head at the absolute lack of insight shown by some. The complete lack of thinking before speaking. Then again, these people probably aren’t too concerned with being hurtful as they are with getting their points across. But sadly, their points often lack self-awareness to the point of being unbecoming.
So know your audience — be careful what you say. It can and will be used against you in the court of life.

Do you have people in your life to whom this applies? I’d love to hear about it.

Happy 13th Birthday to Jake!cropped-cutest1.jpg

I got pregnant with my Jakey at the age of 39 and was single, having separated from his BF when I was 2 months pregnant. I chose to have no genetic testing. My pregnancy went very smoothly, Jake was very active. I had all kinds of tests due to my pre-existing high blood pressure (24 hour urine, EKG, 7 Level II ultrasounds, etc.) and was monitored very closely. Even off high blood pressure meds, it was better than ever, but I just knew it would go up at the end. I was due December 19th but I knew I’d have Jake a bit early. love

There were NO markers during my u/s. I knew what they were looking for and they found nothing. However, at my 7 month u/s, I just had a feeling. The femur bone was within normal but on the low end. The fact that they called the OB in to look told me something might be wrong. He insisted everything was fine but I just had a feeling. The written report made no mention of any markers.

I went next door to my doc. and told her I am sure he has Down syndrome. She said, Laura your odds are still very small and there are NO markers – we can still do an amnio just to know if you like. I said no.

In any case, long story short (too late), I was admitted the day after Thanksgiving when I went for my twice weekly non-stress test because my blood pressure was VERY high. They didn’t even let me go home for my things and to pick up my then 15 year old, Adam, as he wasn’t driving yet. So there’s Adam on the phone with me, finishing packing my bag (this hairbrush or that one, mom?). Adam was amazing through the whole thing and I kept reminding myself of that when he was rotten as teenagers sometimes are!

Well, I was in the hospital that Friday, Saturday, and by Sunday, I was still really sick, throwing up, etc. yet begging to go home! I was still not due for 3 weeks. The doc. came in and said, Laura, let’s do an amnio to check his lungs – if we don’t deliver, you’re just gonna get sicker. The amnio hurt like h-e-*-* – more than labor, or the epidural. They said his lungs were ready so we induced Sunday night. I was so excited. I called Adam at my best friend’s house and he was SO EXCITED! He came right away.

I was on magnesium for the blood pressure and they didn’t warn me that it was like an “out of body” experience. Sadly, I only remember bits and pieces of the labor as a result.

After 18 hours, (1/2 of Adam’s labor), I delivered Jacob after just 2 or 3 pushes. When Jake came out and before I saw him, I asked the doc. (who was pinch-hitting cuz my doc was stuck in surgery), “Does he look like he has Down syndrome?” He said, “No, I don’t think so.”. The nurse asked, “Why would she say that?” They took him to the other end of the room since NICU nurses were there due to my bp and the magnesium I’d been on.

A few minutes later, they let me hold him, but only for about 30 seconds. They said he had some breathing issues (turned out to be transient pulmonary hypertension due to a PDA, which fixed itself, thank God). Then as the doc. was leaving, the nurse came over to him, said something, he shook his head, and they both came over to my bed. As soon as he sat down, I KNEW.

All I remember them saying is, “It looks like he has some characteristics which are consistent with Down syndrome.” That is one of those defining moments in your life, kwim? I didn’t really hear anything else after that. I started to cry as I stroked his cheek and remember worrying that I would get a hot tear on his face.

Adam went with him to NICU while I was in recovery. As they descended on Jake, Adam was saying, “What are you doing to him? He doesn’t like that.” I was scared, and thought I should have learned something about Down syndrome before he was born…

jaAdam knew before I did and what a kid! When I was 7 mos. pregnant and suspected Down syndrome, I told him maybe I should have an amnio “just to be prepared”. He responded “Mom, if we have a Down baby, we love a Down baby!”

Anyway, he knew because he had been videotaping and zoomed in on the nurse whispering to the doctor and saw and heard the word, “down” and KNEW they were going to walk over and tell me. I asked him what went through his mind and he said, “I was just worried about how you were gonna take it.”

My real doc. came into my room later and said she’d seen him and he was beautiful. Then she sat on the bed with me and cried with me. Sadly, I didn’t even remember that later.

001I accepted the diagnosis right away – he was in NICU for 2 weeks, learning to feed, after the pulmonary hypertension fixed itself. It was scary – he’d had to be intubated once, had 2 cardio consults, etc. But I just wanted him home! At the time, they thought he’d be there through Christmas. But I refused to decorate his NICU crib for Christmas. I felt if I did that, I was condemning him to be there that long.

His health since then has been excellent, praise God. He does have delays, especially speech. He will not be like Adam. He will not be a doctor or a lawyer (of course Adam isn’t either). Neither will he ever pilfer a corporation or purposely hurt a soul (hopefully, neither will Adam.)

The only way to guarantee having a “perfect” child as society has defined one is not to have one, kwim? Not all issues that can arise can be foreseen or diagnosed. All I can say is that as tough as having a child with Down syndrome is, the rewards far outweigh the hardships. And it is SO easy to worry about the future. I did it with Adam. I raised him alone his entire 18 years and I worried about what would happen if something happened to me (my parents are deceased, his father never even met him, etc.); I worried about his health, his happiness, etc. It goes with the territory. It is so hard to take parenthood a day at a time and not worry about the future, isn’t it?

So, thanks for sharing today with me. I swear not ONE day passes that I don’t look at Jakey’s beautiful face and just think I must have done something awfully good in my life to deserve him! 0224c

Mrs. Eunice Kennedy Shriver

08/11/2009·public·81 visits

In honor of Eunice Kennedy Shriver Day, September 28th, there is nothing I can write that can better express how wonderful this giving, kind and compassionate woman was, than the tributes written on Mrs. Shriver’s Special Olympics wall.

Thank you, Mrs. Shriver, for all you did for children like my own.

www.eunicekennedyshriver.org/tribut…

Yet another year has passed and I continue to be amazed at the amount of use the “R” word gets. While we do see some people, including celebrities “getting” it and stopping their usage,and we applaud them, it’s one step forward, two steps back, it seems. This year, we can add several new people to the list of clueless or heartless or both.From professional athletes, to politicians to “stars, they can now join  George Clooney in “The Descendants”, dialogue in “The Hangover 2″, Ricky Geravais, who thinks using the term, “mongoloid” or its derivative is hilarious, Larry The Cable Guy and his song, “Donny the Ret@rd” — the list goes on…

I was never under any illusion that the word would be seen for what it is by now, but I had hoped that maybe, a year later, I would have seen more of a decline in the use of the “R” word as a synonym for “stupid”, “silly”, “ridiculous” and other such words. But, no. At least, I haven’t seen a decline. And what’s worse, I continue to see people I know or have admired either defend its use, justify its use by others, or simply turn a blind eye (or ear) to it.

So, in honor of this year’s Spread the Word to End the Word Day (3-6-13), I post my updated blog in the hopes that it will help people understand why we are fighting this battle.Our sons and daughters have a right to basic dignity.

Speak up for those who cannot speak for themselves…defend the rights of the needy.” (Proverbs 31:8,9)

STICKS AND STONES MAY BREAK MY BONES BUT WORDS WILL DEVASTATE ME!

The “R” word.  Well, that’s progress.  At least we are calling it the “R” word, suggesting the entire word should not be spoken aloud.  Retard.  Retarded.  As in, “I’m so retarded.”  “What a retard.”  Bantered about without much forethought–by most.  It hurts those of us who have children who are, in fact, mentally retarded.

The first time I worried about this word was twelve years ago when my son was born and was in the NICU.  As I sat, numb, listening to the geneticist explaining his Down syndrome diagnosis, I interrupted and cried, “I just don’t want anyone calling him a retard.”

For those who don’t realize how hurtful it is, we point it out as nicely as we can, and if we are lucky, the offending party apologizes and tries not to do it again.  I am not unforgiving.  My best friend in the world said it when my little guy was a month old, as she held my son in her arms!  And she was truly sorry when I pointed it out.  Then, when my baby was four months old and hospitalized with pneumonia, his awesome nurse said it as she had trouble getting his blood pressure:  “I’m sorry, Jakey, your nurse is retarded today.”  I said, “Not that there’s anything wrong with that,” with a smile.  She was horrified and apologetic.  I would bet she didn’t do it again, which was my goal, and she remained Jakey’s wonderful nurse.

Then, there are those who think their hands are “clean” because hey, *they*, don’t use it; some of their friends and colleagues do but heaven forbid they ever so nicely ask them not to. Even my then 15 year old knew when his baby brother was a little newborn that when a friend at the lockers at school used it, to say, “Hey dude, my little bro has Down syndrome, please don’t use that word.” And he inevitably got a “Oh, sorry dude.” Easy peasy. Yet we have people in our lives who are too stubborn or ignorant or simply don’t “get” it. Friends and family who justify continuing to hang out with or do business with some because of some yada yada excuse (some career move, to not force their child to give up an acquaintance rather than teach them all along not to want to be around people like that, or who simply don’t have the backbone.)

But what about the many who do know better and continue using it?  What is their excuse?  The use of the word has increased as social media and the internet has grown.  One popular site has a quiz that pops up all too often asking, “How Retarded Are You?”  Gee, I don’t know, but if my twelve-year-old son could read, write or talk, I suppose I could ask him.  Another application on the site has a quiz allowing members to see “what famous retard” they are most like.  Then there is the site, hosted by a police officer in Maryland, titled, “Stop Breaking the Law, Retard.”  It boasts 100,000 members.  Congrats.

I have worked for parenting sites for years. And when I worked in the community, not one day passed that I didn’t see it being used.  By mothers!  Mothers who may one day themselves have a child with Down syndrome or another condition that may cause their child to be called a retard.  I am proud that my employer saw this word for what it is:   hate language.

Its prevalence on the web is astronomical.  If you look at the Special Olympics Spread the Word to End the Word site there is a widget you can use to see how many times in a day the word is used on any given site.  Sadly eye opening.  Of course, all you really have to do is Google the word and let the counting begin….

And want to hear it?  Over and over and over again?  Turn on the TV or go to the movies.  I like TV, but if I were to go one week without hearing a character use it, I’d be shocked.  The list is endless.  While the media may publicize the more blatant and obvious attacks on children like mine (Rush Limbaugh, Rahm Emanuel, Family Guy, Tropic Thunder), that is the tip of the iceberg.  Name a sitcom or reality show and there is a good chance it’s there, I assure you.

So, as I marvel at how hard my little guy works to do what comes easy for those who casually say, “I’m so retarded!” all I can think to say is, “No, you’re not, but my son is.”  And if and when I hear someone call him a “retard,” well, I already feel sorry for them.  How nice that ignorant and cruel people can say all those words.  My child can barely say “whale” (his favorite animal), and will never be functionally verbal.
Which brings me to the next point.  He can’t defend himself.  Which is what makes this more hateful than even the “N” word, which is, of course, reprehensible.

On the Spread the Word group on Facebook, someone wrote that our kids should simply grow thick skins and defend themselves.  Um, what?  If my child had the mental capacity and ability to talk, maybe, but what part of he can’t is that person not understanding?  So, sadly, I’ve come to expect these hurtful and thoughtless statements from strangers, acquaintances, friends and even some family members. I’ve come to expect the “R” word being tossed around and defended and downplayed on a regular basis.  But when it comes from someone you either love or respect or admire, it cuts like a knife.

Make no mistake about words not being hurtful. Broken bones heal, but there are no splints or casts for spirits.

Originally posted on The World of Special Olympics:

STW-HeaderThis year’s annual day of awareness, 03.06.13, is just a few short days away! We’ve got some cool new things to prepare you to help to Spread the Word to End the Word.What’s New in 2013?
  • Our website refresh launched this week! We’ve seen the power in the amazing stories you’ve shared about ending the R-word so we’ve refreshed the site to focus on those stories!
  • Now, share your stories! We know you have stories and it’s never been easier to share yours with the world! Head to our homepage and scroll to the “Share Your Story” button. It’s quick, easy and fun!
  • Coming soon – Mobile Web! Did you know in 2012 25% of our web traffic came from mobile devices?  Well, we listened to the data and have worked hard to put together an amazing mobile optimized experience for you.
  • Watch  “Champions Together” and see how…

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Originally posted on The World of Special Olympics:

An op-ed in the 20 December 2012 Boston Globe by Harvard University professor Nicholas Burns named Special Olympics Chairman & CEO Tim Shriver as a “Peacemaker” in 2012!

Burns, a professor of the practice of diplomacy and international politics at Harvard’s Kennedy School of Government, asked his students to find “champions of peace” amidst a world of turmoil.

As his article states:

Precious few world leaders seem to be using their power boldly and courageously for peace. Instead, we see the Arab world in revolution without an Anwar Sadat to guide it, Congo without the moral leadership of a Desmond Tutu or Nelson Mandela, Israel without a Yitzhak Rabin who had the courage to talk to the enemy.

But, if we look at this year more closely, it is possible to find people, thousands of them, who may not have the power of a state at their disposal but are pushing…

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Hello all! I haven’t been posting lately because I have been very busy working — that’s a good thing! I’ve also been doing some advocacy work and having moved just a few months ago, it’s taken time to get settled.

Jakey is doing awesome at his non -public school, we couldn’t be more grateful that he is there! He has gone from a child once labeled unable to use a communication program as Proloquo2Go and unable to learn to read, ride a bike, and so much more to the exact opposite. He uses his iPad to be a chatter bug with Proloquo2Go, is doing some reading, typing, and is a little daredevil on his bike.

Anyway, I am going to get to blogging more regularly soon.

Originally posted on Missfancypants's World:

Yet another year has passed and I continue to be amazed at the amount of use the “R” word gets. While we do see some people, including celebrities “getting” it and stopping their usage,and we applaud them, it’s one step forward, two steps back, it seems. This year, we can add several new people to the list of clueless or heartless or both.From professional athletes, to politicians to “stars, they can now join  George Clooney in “The Descendants”, dialogue in “The Hangover 2″, Ricky Geravais, who thinks using the term, “mongoloid” or its derivative is hilarious, Larry The Cable Guy and his song, “Donny the Ret@rd” — the list goes on…

I was never under any illusion that the word would be seen for what it is by now, but I had hoped that maybe, a year later, I would have seen more of a decline in the use of…

View original 1,096 more words

A fair warning before you see “The Descendants”.

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