Kidaround

If you live in the Greater Sacramento area, pick up a copy of Kidaround Magazine at any of these locations. There is a great article on Jen and Baby Joaquin, and as you can see our friend Penny took an awesome photo for the cover. If you are from out of town, you can see and read the magazine online here.

This is Penny's original photo:

The "R" word....and Tropic Blunder

A post from Hector....

Most of you have probably heard of Ben Stiller's movie "Tropic Thunder" out in the theaters right now. Some of you might have heard about the controversy surrounding it. Jen brought it to my attention after emailing me a newsletter from the Down Syndrome Information Alliance warning that the language and content in the movie “Tropic Thunder” depicts people with intellectual disabilities in a derogatory and demeaning manner. When I read it I was upset and one of the first things I thought was to write something here so that the word would spread and more people would boycott this movie. But first I wanted to learn more about it. It is hard to have an opinion when you haven't seen the movie.

After reading a few articles, blogs and reviews about the movie and controversy, I was really mad and started thinking about the kind of person Stiller really is. Manohla Dargis (one of the chief film critics for The New York Times) states it well: "Ben Stiller is a professional offender and sometimes very funny man who over the past decade or so has carved out a lucrative niche in the comedy of humiliation, his and everyone else’s". He has been one of my favorite comedians and I have enjoyed his movies, but this hit too close to home and I don't think I can ever see another movie that he is involved with, not only because of Tropic Thunder, but mainly because of his reaction to the whole ordeal.

I think it gets down to the issue of language and how it's interpreted, endorsed or rejected...and the simple fact is that the vast majority of people in this country think it's perfectly OK to use the word "retard" for humorous effect, not realizing (or caring) that it's the equivalent of the "N" word in some circles. THAT is the issue that must be addressed and understood.

I think the thing that's happening with "Tropic" is that the protests are largely based on the volume and magnitude of the content and that is what is so offensive. I think this is where Manohla Dargis got it right -- that "retard" is used so often that it causes us to squirm, not laugh.

She writes:

That’s how he ends up blowing what might have been the film’s sharpest scene, involving Kirk’s explanation for why Tugg’s performance as a retarded man in “Simple Jack” doomed his chances for an Oscar, an elucidation that includes a clever taxonomy of all the ways it’s permissible to play intellectually challenged in Hollywood (“Forrest Gump” is statuette-worthy, though not “I Am Sam”) and a grindingly unfunny repetition of the word retard. If Mr. Downey — who at this point in his career apparently can do no wrong, even in blackface — can’t make this bit work, it’s because the bit is unworkable. The pomposity of the Oscars is the hook, but it’s the word retard that provides the squirm

Like I mentioned before, I'm a huge fan of Stiller's humor and his movies but this is too much, it is not acceptable to use the "R" word like he does here, many people will understand and appreciate the REAL target of the film's satire, but when you're pummeled by the "R" word, the conclusion is that it's OK to use it, and it is definitively NOT. I haven't seen this movie, I can't tell you how bad it is, but I will borrow the words of someone who saw it and wrote about it: I thought the movie was hilarious, for the most part. After the first mention of "Simple Jack" I thought, "Is that it? That's what all the fuss is about?" -- but when the "full retard" scene came on, all I could think of is "Uh-oh...this really is dangerous." And that's coming from someone who TOTALLY appreciates where that scene is coming from.

I thought of a lot more things to say but I read this blog that Jen forwarded to me and we both thought that it was brilliant. Instead of trying to duplicate an excellent essay about how we felt, I will point you to it. I hope you have time to read it: Never Go Full Stiller...

And if you'd like to read the full New York times review by Manohla Dargis mentioned above: Tropic Thunder (2008) NYT

If you seen this movie sends us a note, tell us what you think. If you haven't, please consider boycotting it, every bit counts to send a message to Stiller and Dreamworks, like Emily Elizabeth from "wonderbabe" blog puts it: Friends don't let friends see Tropic Thunder because friends don't let friends go full Stiller.

My "A-Ha" Moment

Most of you know that I'm a HUGE Oprah Winfrey fan...that and a huge fan of Brad Pitt and Angelina Jolie and their gorgeous children...but I digress. Anyway, in "O" Magazine Oprah always features an article about some famous person's "A-Ha" moment. I'm certainly not famous but I have to share mine.

It came during one of lectures at the Institutes. Throughout the week, we would hear success stories about some of the graduates of the program around the world. We heard about a young boy, who is now a young man, who started the program as a baby. He lived in Italy and attended the Institutes program over there. He has Down syndrome. His parents were very involved in the program and dedicated to helping him achieve his full potential. We were able to see pictures of this young boy as he grew and developed into a vibrant young man. In every picture we saw, he was surrounded by friends and family. Pictures of him traveling around the world, pictures of him doing different sporting events, pictures of him leading a full and vibrant life. In fact, he ran with the Olympic torch when the winter games were held in Torino, Italy. He also just received his Master's degree in Economics at a university in Italy. A Master's degree...amazing!

It was with this story that I breathed a great sigh of relief, a giant "A-Ha". If this young man can do it, so can Joaquin. It's not about Joaquin getting a master's degree but if that is what he wants to do, knowing that he could do it, gives me all the hope in the world.

"Mama"

I think this is Joaquin's official first word!

Since we started the treatment program, I've been working on different sounds and songs to help stimulate the baby's brain. We also do oral/facial massage and encourage chewing and blowing raspberries and other mouth movements and sounds. Joaquin has always been fascinated by this and for about 2 weeks I've been attempting to teach him "mama", repeating it over and over to him. He loves to watch my mouth move when I say it and you can see his wheels turning.

Well, a couple days ago around his 6 month birthday, he decided to say "mamamamamamamama" with exaggerated mouth movements that were completely new for him. SOOOOOOO exciting! Then, just the other morning about 4 am, he woke up (in our bed) and said out of the blue and very clearly "mama" and then proceeded to babble on about other things. I think we may have even heard some "babababas" and some "papapapapas" as he experimented with his new vocabulary for about 20 minutes before falling back asleep. Both Hector and I were amused by his early morning conversation and couldn't help but laugh. I know this is all very pre-speech stuff but we are thrilled nonetheless. We'll try to catch it on film to share with all of you. It's the cutest thing ever and of course "Mama" is very proud. Now we'll start working on "Papa" and "Nana" to keep everyone happy :).

A Startling Statistic

Over 90% of of couples who receive a positive result from their amnio for Down syndrome, terminate their pregnancies. That's a huge number. It's not only startling but scary.

As you may have read in an earlier post, I declined the AFP early on in my pregnancy. My doctor and nurse had offered it many times and every time I declined. I have heard too many stories of "false" positive results. A positive result means that you have a higher probability of having a child with a genetic problem or Down syndrome. I was 36 when I got pregnant with Joaquin and being pregnant in your late thirties puts added strain and stress on you, mostly because of how the professionals handle "older" mothers. We are encouraged to have genetic counseling based solely on age and we are encouraged to have an amniocentesis, all of this to rule out or discover problems with our unborn children.

If you get a positive AFP (alpha fetal protein) or if your 20 week ultrasound shows "markers" for DS such as a spot on the heart or heart problems, short femur length or a thick neuchal fold, the health care professionals will recommend an amnio to get confirmation. I have heard from so many mothers that this is not only encouraged but almost pushed to be completed after getting a positive AFP.

I went through genetic counseling with my pregnancy because this was encouraged based on my age. Hector and I went through with it mostly because it was covered by our insurance and we thought it would be very educational. We told the counselor that we would decline the amnio but did agree to an in depth 20 week ultrasound to make sure all was well with the baby. How strange it is to think back on these appointments, the ultrasound and the genetic counseling, and to think we were carrying a baby with Down syndrome and nothing led us to discover this. The ultrasound showed a perfectly healthy baby, no need for alarm or concern. How different this would have been if we would have gotten the AFP or the amnio. It's not so much the testing that bothers me but how the test results are handled and how fear plays a factor in how decisions are made based on those results.

It's hard sometimes to talk with other people who are pregnant or trying to get pregnant when the subject of prenatal testing is involved. Most of the time, it's just a casual conversation. A lot of my friends are older and some are planning and hoping to get pregnant. Inevitably, the topic comes up. People are either on one side of the fence or the other, testing just to have more information and to be better prepared for the birth or testing to rule out problems and end the pregnancy before it gets too far along. It's so personal for me now because I have a baby that many people would have decided not to keep. It's surreal sometimes.

I remember an email conversation I had with a friend who found out she was pregnant towards the end of my pregnancy. She too was an "older" mother and didn't want to formally announce her pregnancy until after she had her CVS. CVS tests can give similar results found with an amnio but can be completed much earlier in the pregnancy. She was prepared to terminate if the results came back positive and wasn't going to celebrate her pregnancy until after she found out that everything was fine with the baby. She had determined from the get go that she would not give birth to a child with a genetic problem. I'm curious how our conversation would have been if I had known that I was carrying a baby with Trisomy 21.

I am so fortunate that Joaquin had no serious health problems related to his Down syndrome. If he had had a serious heart problem, I'm pretty sure we would have seen it during our Level II ultrasound at 20 weeks. This would have made things much more complicated and stressful. I can only imagine how hard it must be for an expectant couple to handle this type of news and the worry it would cause. The same with finding out any difficult information about your unborn baby from a CVS, AFP or amnio. We all want the best for our children and perfect health is on the top of the list. We all want our children to start out with the best of circumstances.

But now I feel so differently about prenatal testing and diagnosis. I'm forever changed by my experience. Even the most casual of conversations about prenatal testing, the ones we have all the time as parents and expectant parents, are more personal to me. It's almost as if I have this internal alarm that goes off inside when I hear the words CVS, AFP and amnio. Now that I know what the termination rate is, it is so scary to me to think that a baby like Joaquin might not be given the chance to live. Why is the abortion rate so high? Do people look at Joaquin and think that he shouldn't be here? Crazy thoughts, I know, but knowing the statistics, it's hard not to wonder. Is society so caught up in perfection that we cannot accept babies with imperfections? When will the attitudes change? Will they ever? These are just my innermost thoughts and are not meant to be controversial but I know this topic gets very touchy very fast. I just want to understand why over 90% of pregnancies are terminated because of a DS diagnosis. That percentage is so incredibly high. My fear is that these expectant couples are given worst case scenarios and doomsday prophecies. Why else would this rate be so high?

My hope is that Joaquin and I can help some expectant parents see the "other side" of a positive result from an AFP, CVS or amnio. I am so grateful for non profit groups like the Down Syndrome Information Alliance (www.dsia.org) here in Sacramento and other national organizations that are working very hard to make sure that with every positive test for DS, the expectant parents are given information and support so that they can make informed decisions. I completely understand a woman's right to choose but I firmly believe in making sure that parents get both sides of the story before making such a big decision. Let's make informed decisions. We need all the facts, the positive not just the negative. Parents need to hear that children with DS are considered gifts to their families. Parents need to hear stories of how these children are so incredibly bright and full of potential and that many of the potential health problems are able to be treated. Parents need to meet other parents who have decided to keep their babies and would not change a thing about them. Parents also need to hear that there is a waiting list of people eager to adopt a child with Down syndrome.

I can't imagine my life without Joaquin and I can't imagine the world without Down syndrome. It's not something to eliminate or terminate in my opinion. It's something to accept and embrace. We can celebrate the birth of these amazing babies.

Progress Report

It's been two weeks since we started the Intensive Treatment Program with Joaquin and things are going great. We have a checklist every day with all activities that we need to accomplish and this is the only way to keep track of it all. It's a challenge to fit it all in, between frequent naps that the baby takes, driving the older boys to their activities, preparing and eating meals, potty training Mateo, etc. etc. Time really flies by.

Joaquin is thriving! It's almost as if you can see the synapsis' in his brain firing off. When we are in the middle of doing a bunch of activities, you can see the light in his eyes. He gets really excited and chatty and it's so much fun to see. He is holding his head up so much better already and he loves to shake his bells and rattles and absolutely LOVES to play pat-a-cake. He is also much more tired at the end of the day. When he's done, he's done and ready for sleep. And, actually so am I.

Hector and I try to get a few patterns in before he goes to work in the morning and Hector is really great about coming home from work and doing a bunch of exercises with the baby. He also manages to fit in some quality time with Diego and Mateo. It definitely takes a team effort.

It is amazing to see the transformation in such a short time. Joaquin has to go down his crawling track up to 20 times a day now for about 1 or 2 minutes each session, and in the last couple of days, you can see how he is starting to push with his feet and he has figured out that the movement of arms and legs transfers to forward movement. It is hard to explain the joy that we feel with every small progress that happens. It is all the motivation we need.

Joaquin is loving his flash cards or "Bits". One thing that they tell you at the Institutes is that babies love to learn and that they would rather learn than eat. We show him three different flash cards every day more than 10 times a day. He loves it so much that we try to do it as much as possible. When you put the cards in front of his face, his expression changes and he almost holds his breath. It is such a joy to see.

Diego and Mateo love to get in the action too. They'll cheer the baby on from the bottom of the crawling track and they also love to be "patterned" after Joaquin gets patterned. It's adorable.

So, in a nutshell, we are ALL having so much fun with the program.



Two weeks ago when we first started with the track, sometimes he will slide right down, but mostly he will go down slowly with any movement of his arms and legs, and that is how his brain learns that movement like that transfers to moving forward.



Joaquin's progress after only less than two weeks is remarkable, he is favoring his right leg but as you can see he is getting really good at making his way down the track. It is like a light switch went on in his brain.



Baby taking a nap, he is so tired after a couple of hours of work, you can see his bits that he loves so much in the background.