It's a Tooth....AGAIN!

So, tooth #2 decided to arrive today and joined tooth #1! Yahoo! Side by side on the bottom they both sit and it is so adorable! No more toothless grins.

Great news!

One of our posts from this blog was selected to be published in a book called "Gifts: Volume II" due late 2009 or early 2010!!! We won't tell which post so it will be a surprise but we got word on Friday that the editor had selected us and we will start working with an editing team in December to fine tune the essay.

I read the book "GIFTS: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives" when I first learned about Joaquin's diagnosis and it quickly became a lifeline for me. It was absolutely instrumental in helping me find peace and happiness with the diagnosis. It's a book filled with over 60 stories written by mothers about their children who have DS. "Gifts II" is the sequel to the first book and will expand on the topics of acceptance, courage, friendship, awareness and joy. I saw earlier this summer that the editor was looking for submissions to be hand selected for the new book, so Hector and I each submitted one.

We are so thrilled and the news brought tears to Hector's eyes. To think that we will be able to help others the way the stories in the first book helped us is just priceless.

More Alike Than Different

Can you guess who is who?

One of the biggest goals of Down Syndrome Awareness Month is to help people understand that people with Down syndrome are more alike than different. Here are each of our boys about the same age in the same hand knit beanie that my Grandma Esther made when Diego was first born. Even though children with Down syndrome have many common physical characteristics, they still have 46 chromosomes that came from each of their parents so they will still look very similar to their siblings. I think these photos prove it!

Baby Flex

One of the characteristics of Down syndrome is "an excessive ability to extend the joints." Babies with DS are extremely flexible and Joaquin is no exception. Here is a photo of one of his most favorite positions.  We are constantly reminding him not to poke his eye out...with his toes!!!

Abuela

Here is a photo of Joaquin and Abuela (Hector's mom) when they met in Mexico earlier this year.

The "Face"

So I just have to clarify this picture (and the other "face" pictures in the Buddy Walk slide show.)

Joaquin is not unhappy in these photos nor is he about to cry. In fact, he still rarely if ever cries at all. This is the "face" that he makes whenever the sun hits his face, or it's too bright outside, or when we shine the light in his eyes during his sensory stimulation program. It is hilarious to see him make it because he can really exaggerate it and his brothers get a kick out of it too. It cracks us all up! Joaquin will make this face and then quickly turn it off when you say to him "open your eyes" or if you put him back in the shade.

I think it's a preview into his personality. I think he's got a little "ham" in him. We love the "face"!

Questions?

In honor of Down Syndrome Awareness Month, I wanted to welcome any questions you may have. Often when I see people and Joaquin is with me, there is a lot of interest about some of the physical markers I noticed on Joaquin when he was newborn....the sandal gap on his toes, the crease on his palm, etc. At the Buddy Walk on Saturday, there were myths and facts posted along the path to help educate the public about DS. Please, if anyone reading this blog has any questions at all, I would love to answer them. Really, anything is open for discussion! I'd also be happy to answer any questions about the program we are doing with the Institutes. You can post your question in the comments section and I will do my best to answer them all. Fire away!!!

It's a Tooth

Joaquin has his first tooth! It broke through the skin earlier this week and every day a little more of it shows. It's on the bottom in the middle. I think the second one right next to it is coming any day. My baby is growing up! It is common for babies with DS to have very erratic tooth eruption and sometimes a very late start. We met the most adorable baby on Saturday at the Buddy Walk and he didn't get his first tooth until 16 months and it was his molars. His mom called him the poster child for DS in regards to teeth. I believe his name was Nathan and oh my gosh, he was the cutest thing ever!
We'll post a picture as soon as it's more visible. In the meantime, here is another photo of the two of us yesterday at the Buddy Walk.

Buddy Walk 2008

A slide show from our very special day spent with great friends and family. Enjoy!


Click on the image

The slideshow might not load in some systems. Here is an alternative one that Hector made. (Please be patient, it might take a couple of minutes to load)

Update on Andres

A post from Hector...

A few days ago I was chatting with my nephew Santiago and as always we talked about our families. "How is everyone doing?" Never anything too deep but I love how polite he is, always concerned about every single one of us. So I went through the motions of asking him about his brothers Juan Pablo and Andres, while I was trying to do some work on the computer at the same time. After I asked him about Andres, I got a little curious about what life with Andres was like and we started talking about the things that Andres likes to do. Andres loves to type on the computer, not sure what exactly but Santiago says that he copies his favorite books. I asked Santiago to help create an email account for Andres so that we could write to each other. I would love to get to know Andres better and know more about his thoughts. I confirmed that Andres is in his senior year of high school and I casually asked Santiago if he knew what Andres was going to do after he graduated from school. To my surprise he responded "He is going to college, to la Ibero", that's La Universidad Iberoamericana, one of the top universities in Mexico. I'm not sure about any of the details or how it is going to work out but I was so pleased to hear that. Santiago didn't know much more about Andres' plans but I can't wait to hear more about it and what he plans to study.

I am so proud of him and it gives me great hope to think that Joaquin might be able to get there someday.

Here are a few on my favorite photos of Andres growing up:

This is my most memorable photo of him, I remember we were playing soccer in my parents front patio and I started taking photos of him, he climbed on top of me and was laying on my chest looking at the camera with those big eyes. I remember how sweet and loving he was, I use to love when he walked into my parents house, I would get down on my knees and ask him for a hug, that was my favorite thing.

On a family trip to Oaxaca

So cute with his glasses

With Glenn Doman on one of his visits to the Institutes

Andres this past summer in Mexico with Mateo

Get It Down: 31 for 21

October is Down Syndrome Awareness Month and there is a small campaign (that is getting bigger by the day) that is encouraging bloggers in the Down syndrome community to post all 31 days of October in honor of Trisomy 21... hence 31 for 21. So, we'll do our best to make this happen!


We are gearing up for the Buddy Walk this Saturday and I've decided to make light blue tie dye t-shirts with the saying "Walking for Joaquin: Buddy Walk 2008" for all the kids walking with us. I've got horrible blisters on my fingers from all the rubber banding (this was my first attempt at tie dying) but they turned out adorable! There will be at least 26 children walking with our group. Team Baby Joaquin is currently ranked #2 in fundraising efforts!!

A gigantic THANK YOU to everyone who helped us meet and EXCEED our goal of $1000. It means the world to us and it will make a big difference in the lives of families blessed with a new baby with Down syndrome.

"Founded by God"

I just ran across a piece of scratch paper that a nurse gave to me when I was in the hospital after delivering Joaquin.

I had taken a walk down the hallway of the hospital on the evening of the day Joaquin was born, just to check out the maternity floor. Since his birth was so fast, I never got a chance to get my bearings. I didn't even know where my room was in relation to the rest of the ward. Anyway, during my walk, I stopped at the nurses station to get some water with that crunchy crushed ice in it and chatted with the night nurses. We got to talking about names and what they mean and where they come from. I told them that Diego means "James" in Spanish and Mateo means "Matthew" but that I had no idea what the English translation for Joaquin was or if one existed. The nurses and I continued to chat for awhile and then I left to get back to my baby and my husband.

Later that night, Hector had gone home to sleep with the boys and I was alone in my room with the baby. It was the middle of the night and I had drifted to sleep. The only light in the room was a nightlight behind my bed. I was in that dreamlike sleep when I realized that one of the nurses I had spoken with earlier had come into my room. I was a bit startled and as I tried to wake myself up, she quickly handed me the piece of scratch paper and said that she did a little research on Joaquin's name and she wanted me to have it. She quickly left the room, not wanting to disturb me any further. She wasn't the nurse assigned to me so I never got the chance to see her again. I turned on one of the reading lights on the hospital bed and on the piece of paper, she had written "Joaquin means 'founded by God' in Hebrew. The original name is Joachim, the father of the Virgin Mary."

I remember feeling an overwhelming sense of peace when I read this. I remember feeling very touched by the nurse's kindness and thoughtfulness. I also remember thinking how special this name was for my sweet, precious baby boy. Now I know why.

"Is He Cross-Eyed?"

I was at the checkout stand at our local co-op when the lady checking us out was really "checking us out." She was looking at Mateo in the shopping cart and mentioned how cute he was and how he looked like a little man. It must be his new crewcut, it really is adorable. Then she was looking at Joaquin who was in the baby carrier on my chest and she asked if he was a boy. Then came the "look". She stared briefly at him and then asked me "Is he cross-eyed?" I took the comment as just a matter of fact conversation and said, "Yes, he's cross-eyed." Then I mentioned that we were going to work on trying to correct it and left it at that. This was the first time a stranger has said anything to me out of the ordinary about Joaquin. I took it in stride but I know this is a first of many "looks" and comments that we might get for years and years to come. In the past, when people have stared at the baby, I just assumed it was because he's the cutest darn thing but now I'm wondering if it's because he "looks" different.

Anyway, it's time for an update on our little man!

Joaquin is now 7 1/2 months old and he just started solid foods. He's had peas, carrots, sweet potatoes and applesauce. He loves them all (most of the time) but I discovered after speaking with his speech therapist that I'm putting way too much on the spoon. We are supposed to feed him on alternating sides of his mouth which will help encourage him to use all the muscles of his mouth and tongue to move the food around and swallow. He has no difficulties swallowing and he loves to blow raspberries when his mouth is full. Too funny and very messy!

We have a hearing aid evaluation later this week. We will determine whether or not we need to use hearing aids until his ears are big enough for tubes. Last visit to the ENT (Ear, Nose, and Throat) doctor, we found out his ear canals are still too small for tube placement. This could change quickly though, even in just a few months.

Last week we had our first visit to the Opthomologist. As I mentioned earlier and you might have noticed in the photos, Joaquin is cross eyed so we knew going into the appointment that he had a strabismus. He is also still very sensitive to light. The face he makes when he's in the bright light is hilarious. He's quite a "ham" already and is showing us his humorous side with his facial expressions. The doctor said that his sight is good from what she can tell so the strabismus is more likely related to a brain disorganization. She is recommending that we "patch" his good eye 3 hours a day for 3 months and then reevaluate. Joaquin is so easy going that he doesn't object to the patch at all and even in a few days we've seen some improvement. 10% of the cases of strabismus can be resolved with just the patch alone. If in 3 months, he continues to have the crossed eyes, she will recommend surgery. Now comes the hard part, the Institutes does not recommend patching and also does not agree with surgery. So we will have to weigh both sides of the argument and decide which course of action is the best for Joaquin. The Institutes believes that the sensory stimulation part of his program is in essence organizing and developing his brain, so the professionals there don't see the need for patching. The sensory stimulation program which includes the bits of intelligence cards and the light reflex exercises, where we go into a darkened room and shine a light into each eye over and over again several times a day, is much more comprehensive. They also feel that surgery may correct the condition temporarily but without solving the root of the problem in the brain through sensory input, the effects of the surgery will not last for very long. Decisions, decisions.... We will see an eye doctor in Philadelphia when we return in December who is very familiar with the Institutes program and children with Down syndrome so we look forward to hearing his opinion based on what he knows and has witnessed with the program.


Joaquin reading his bits of intelligence

Finally, Joaquin is still progressing and always impresses his physical therapist, Michelle, who comes to visit him twice a week through Alta Regional Center services. On Tuesdays, she meets Joaquin at my parent's spa and they do water therapy together. On Wednesdays, she comes to our house and works with him for about 45 minutes. Hector and I can't always see the gains because we are with him constantly but with Michelle coming twice a week, she is able to see and remark on all the progress he makes and she is always amazed. His trunk control, head control, upper body strength and endurance are all improving in leaps and bounds. He is able to hang from our thumbs for up to 10 seconds suspended in the air. We can tell he is getting more oxygen and increasing his lung capacity because the volume of his voice is louder and stronger every day. He will often begin the day "talking" which sounds more like yelling right now. This has become Diego and Mateo's wake up call....sometimes earlier than we would like but very cute nonetheless.

Joaquin has also developed a bit of stranger anxiety and we are so excited!!! I know it sounds strange but we were so proud the day he cried in the arms of a dear friend of ours because the voice and the face were unfamiliar to him. The fact that he can notice this is such a big milestone. We had to explain to our friend why we were so excited about it even though normally it's not something to rejoice.

We continue to work with the Intensive Treatment Program and some days it's harder than others to get it all in but we give it our best effort. There is the occasional day that I find myself just wanting to hold him, kiss him, stare at him and cuddle him and I could do it for hours and hours. His sweet face, his amazing dark curly lashes and his huge grin are just the best.
Joaquin's most favorite thing right now? Itsy bitsy spider! It's gets him giggling every time. That....and cheering and clapping together....you should see how wide his grin is when we get going. He continues to amaze us and humble us every day.

And here is Joaquin playing with his Papa...

We have a dream... (Part 2)

Post by Hector...

After the Republican National Convention was over and Sarah Palin left us so energized and excited about the possibility of having a friend and an advocate in the White House, our sky was looking absolutely red not blue. So the first thing I did was to try to learn more about what the McCain-Palin ticket stance on different issues was, specifically on disability rights and the Individuals with Disabilities Education Act (IDEA).

First I went to McCain's website, and bunched up with some other programs he mentions IDEA, in a page for Early Education with no specifics. Then I did a search and the only related link that came back was the early education page I already seen. The word "disability" only pops up in relation to veterans. They haven't addressed the issue of funding IDEA and lack any specific plans, hmmmm...

On Obama's page, I was surprised to find the word "Disabilities" listed in the Issues menu, right alongside education, the economy, and Iraq. Click on that and at the bottom there is a link for a PDF to see his full Disabilities Plan. Open it and you can read: "BARACK OBAMA’S PLAN TO EMPOWER AMERICANS WITH DISABILITIES", Providing Americans with Disabilities Educational Opportunities: Fully Funding the Individuals with Disabilities Education Act (IDEA), Early Intervention for Children with Disabilities, Support Universal Screening, and it goes on and on. Pretty impressive.

I was dumbfounded. Why doesn't McCain have a plan on how they will increased funds for programs to help people with disabilites? The McCain-Palin ticket has not specified yet how they are going to help the more than 44 million people with disabilities.

I applaud Sarah Palin for using her office to help families who need it and raising the funds per disable child by almost double and increasing funds for several other disability programs in the state of Alaska. Her personal experience as a mother of a child with a disability is inspiring, as inspiring as the story of any mother of a disable child. There is no doubt that she has increased the visibility of the disability community, especially of the Down Syndrome community, the one that has been very vocal with admiration and criticism. Personally, I love seeing Trig up on stage being passed around without shame, being cuddled and loved (and his hair licked by his baby sister!!!). How wonderful it is to see the face of Down syndrome all over the news.

So Sarah, we are all waiting for a specific plan. How proactive will the McCain-Palin administration be on disability issues?

I do want to believe in Palin. Wouldn't it be wonderful to celebrate the first ever woman VP, to have Trig crawling around all over the White House, and to raise the visibility of DS to a level that none of us could have ever possibly imagined? We can only hope that the McCain-Palin disabilities plan looks anything, if not better than, what Obama is offering at this time. If nothing else, Down syndrome is on a lot of peoples minds and Palin is certainly responsible for an exposure effect that is necessary.

Please take a look at this report by Katie Couric:




And some more important details that were edited out...



Sound familiar? Almost identical to what Jen was trying to explain in the article in Kidaround magazine.

We are waiting for an answer McCain and Palin....

Walking for Joaquin

We are so excited to participate in our first mile long Buddy Walk on Saturday, October 4th at Southside Park in Sacramento. We plan on walking it together as a group of friends and family and we've started a team called "Baby Joaquin"...walking for Joaquin.

Buddy Walks will be held all over the country to increase awareness, raise funds for local programs and improve acceptance of people with Down syndrome. The Down Syndrome Information Alliance here in Sacramento is hoping to raise $50,000 this year and the money will support programs that will improve the lives of people with DS. Team Baby Joaquin has a modest goal of $500- we figured $100 for each family member in the Sanchez clan. Thank you so much to our friends and family who have already donated in honor of our sweet baby J.

Chris Burke and his band will be performing at the park after the walk. Do you remember "Corky" from the 80's sitcom "Life Goes On"? It should be a lot of fun to see him entertain the crowd!

If you want to join our team and walk with Joaquin or are interested in making a donation to our team, please check out our team website:

Click Here to Donate
We would love to have you join us in our efforts to raise money for a great cause!

Muchas Gracias!

We have a dream...

Shortly after we found out about Joaquin's diagnosis I read an article in the Sacramento Bee about Trig's birth to Governor Sarah Palin in Alaska and I told Jen to send her a note with our support. A few weeks later we got an email from Palin's mother, who was helping her handle her mail, thanking us for our kind note and congratulating us as well. As you can imagine, we were very surprised and elated when we heard the news about McCain's pick for his VP running mate.

We know that talking about politics is a sure way to stir up emotions and make some enemies but we have been wanting to write something about this since the news broke but we didn't want to use this blog as a media to express our political views. Nevertheless, last night Jen and I watched Sarah Palin's speech and were touched and excited to hear her talk about families with special needs.

Sometimes even the greatest joys bring challenge. And children with special needs inspire a very, very special love.

To the families of special-needs children all across this country, I have a message for you: For years, you've sought to make America a more welcoming place for your sons and daughters. And I pledge to you that, if we're elected, you will have a friend and advocate in the White House.

So politics aside, you have to agree that as a family with a baby boy with Down syndrome those words are a breath of fresh air and if nothing else give us hope of a better future for Joaquin and all children with special needs.

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.

Halo with a Twist

I've been meaning to write about a very special gift I got from Hector awhile back, shortly after receiving Joaquin's diagnosis. I wear it around my neck and I love it. It's my "Halo with a Twist" and it has Joaquin's name and birthdate engraved on it. I love it and I get compliments on it all the time. It's a pretty sterling silver oval "Halo" that is twisted on one side. It symbolizes the beauty and uniqueness of imperfection. It has become the first international symbol for Down syndrome. The founder of the website Band of Angels, Cynthia Kidder, describes it best. "It’s shimmering and reflective of light; a little different, sturdy yet beautiful. The light is reflected and radiated from it. The twist is the reminder of imperfections in each of us."

Thank you again Hector for my beautiful necklace. I love it and I love you.

Gearing Up...

We are gearing up to start the Institutes program this Monday and it's going to be a lot of work.

We will be patterning Joaquin 6 times per day in a truncal pattern for up to a minute each time. He will be on an incline crawling track starting 10 times per day and building up to 30 times per day for a distance of 1 meter each time and the majority of his free time will be spent on the floor in different stimulating environments. We have put a checkerboard wall up on one wall in his room. We will be stimulating his light reflex 20 times per day and having him locate light in a darkened room 5 times per day. We will have him look at black and white images 3 times per day and read stories to him with books that have large colorful images. We will stimulate his startle reflex 15 times per day with loud unexpected sounds as well as introduce him to different interesting and household sounds 15 times per day. We will stimulate his sense of touch 20 times per day with hot, cold, warm, cool, soft, rough stimuli on his arms, legs, hands, feet, etc (stimulating both his vital sensation as well as his gnostic sensation). We will also get him to grasp a pole 10 times per day and work up to having him hang on it using two hands and throughout the day we will work on different balance activities around the house (spinning, rocking, swaying, etc). We will also start using a choice board (basic yes/no board) and some basic sign language (milk, eat, more signs) with him 10 times per day.

Whew.......I think I can fit it all in. We WILL fit it all in!

Unanswered Questions

It's still difficult to see adults with Down syndrome. Lately, I've run into some groups of disabled adults at the park and at the mall and there is always at least one or two adults with DS. It's very surreal for me as I look at them and then look at my baby. I don't think I've noticed as many Down syndrome adults in the past five years as much as I do now. Lately the groups of people I have seen are severely impaired and have the very typical behaviors that are often associated with severe disabilities. Their group leaders escort the adults through the mall, holding their hands or escort them to the park picnic tables where they all sit quietly with little or no interaction. This is so terribly difficult to see. I can't help but wonder.... what kind of childhood did they have? Are these the babies that were sent away to an institution? Are these the babies that were more severe and the parents weren't able to take care of them? Where do they live now? Are their families at all involved? Did they have services early on to help them achieve their potential or were they just left alone to fend for themselves? I have so many unanswered questions.

What is so strange is that I have always been around disabled people and I'm typically very comfortable around this population. My major in college was Recreation Therapy and some of my first jobs were working with disabled children and adults. For over 8 years I worked with all different types of patients in every setting imaginable from disabled day camps to stroke and head injury clinics and children's hospitals to state hospitals with criminally insane men. I wouldn't say it was my calling but I've always had a place in my heart for the disadvantaged. I think somewhere deep down inside I always thought I might have a child with a disability. My mom and I have always sought out babies who have Down syndrome at church or at big public gatherings. I remember when pregnant with Joaquin, seeing an adorable infant with DS at a San Francisco Giant's game and my mom and I were mesmerized by him, pointing him out to Hector. I have always been curious about these children and loved their beautiful smiles and pretty eyes. I can even recall thinking and even saying to Hector, early on in our relationship before we were married, that we were the type of couple that would be given a child with Down syndrome....with my background and his experience with his nephew. He doesn't remember this conversation but I do. It's still surreal to me that this is now my reality. Even my mom who is a neonatal nurse has always said that her favorite babies in the nursery are the "Down's babies" and now she has her own.

But it's the adults in group settings that I still am challenged by and I'm a bit ashamed of it to be honest. I know I shouldn't pity them but I do. I guess what makes these recent experiences so uncomfortable for me is that I never want Joaquin to be "shuffled" around. With my background in Recreation Therapy, I know that there is a reason these adults are escorted around and taken to malls and parks. It's called life enrichment and normalization, but now as a mother with a child with DS, I see it as just the opposite. I know these adults probably weren't offered early intervention services or quality interactions as babies and young children. The life these adults lead is still valuable, of course, but all I see is the loss of potential and what could have been. I know that the future for Joaquin can and will be very full, active and enriched and hopefully this is the case for most every child born today with Down syndrome, as it should be. In the near future, I hope to see more adults with DS walking independently in the mall or with friends and family shopping where they want to go. I want to see adults with DS taking their own young nieces and nephews to the park to play and to push them on the swings. That is normal and that is life enrichment. That is my hope for Joaquin.



Patterning...



Joaquin in his new crawling track



Wah Keen!

The Special Mother

This story was written by Erma Bombeck on May 11, 1980 and Glenn Doman recited it for us at the last hour of the last day of lectures in Philadelphia. It was very touching and of course I was crying by the end of it, as was every other mother in the room with me, all of us feeling a sense of camaraderie.

THE SPECIAL MOTHER
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.

This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, he instructs His angels to make notes in a giant ledger.

"Armstrong, Beth: son. Patron saint, Matthew. Forest, Marjorie: daughter; patron saint Cecilia.

"Rutledge, Carrie: twins. Patron saint....give her Gerard. He's used to profanity."

Finally, He passes a name to an angel and smiles. "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a child with a handicap to a mother who does not know laughter? That would be cruel."

"But does she have patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it."

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied.

"She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Momma' for the first time, she will be witness to a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

"I will permit her to see clearly the things I see- ignorance, cruelty, prejudice- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in mid-air.

God smiles. "A mirror will suffice."

Never Leave the Wounded Behind

A post from Hector...
Some of the lectures we heard at the Institutes were given by the staff, but mostly by Janet Doman, the Director of the Institutes and Douglas Doman, the Vice Director. But some of them are still given by Glenn Doman, the founder. He sits in a chair at the front of the auditorium and uses cue cards that he reads. Every day, we were asked to arrive at least 15 minutes early in the morning so we could find our assigned seats because they shuffle everyone around. The last day Jen and I were lucky to be seated in the front row a few feet from where Glenn Doman was sitting.

That day we were really tired. We had heard more than 40+ hours of intense lectures in less than 5 days and the amount of information was overwhelming, so even though at times I wanted desperately to shut my eyes and rest my mind, having Glenn Doman at arms length and looking at you when he speaks, there was no choice but to listen.

One of the required readings for the course is the book, "What to do about your brain injured child..." which I read the week before our trip, I found the book fascinating, and most of Glenn's lectures are in the book, but to hear them from the man himself was a treat. Towards the end of the book he talks about family and how throughout history the family has survived and the reason it survives is so that we can divide our time unevenly. He goes on to talk about his three families: the Doman family, the Staff at the Institutes, and the Infantry Rifle Company in World War II. This is a excerpt from his book:

"My third family was my infantry rifle company. That was a true family. In infantry rifle company, the only people in front of you are the bad guys. They are shooting at you and trying to kill you. You are shooting at them and trying to kill them too. Under these circumstances you make very dear friends very - very, very quickly. More things happen to you in five minutes than might happen normally in a lifetime. Sometimes you stop shooting long enough to crawl out in the field where a lot of shooting is going on in order to grab a wounded soldier by the leg and pull him in. That's dividing your time unevenly. Everybody's in favor of that and it does amazing things to you. One of the most important principles I learned there was a law of the infantry. The law is you never leave the wounded behind. Most casualties take place in the infantry so it is vital that you never leave the wounded behind. As an officer-in-training you think that you understand it. Then you're in combat and the kid next to you gets a bullet through his chest. And down he goes. It doesn't occur to you for one second to leave him behind. Not because it's a principle you have been taught but because he is you. If the wind had been four miles an hour more from the east, you'd be lying on the ground with a bullet through your chest. All things being equal you might as well be the one lying on the ground three minutes from now. You never leave the wounded behind because that wounded soldier beside you is you. That is why you never, never, never leave the wounded behind."

As I was listening to him say these words, I was picturing baby Joaquin so full of love and smiles and how much he needs us to divide our time unevenly, how he needs us to roll up our sleeves every day and do battle to help him reach his full potential. Because the alternative is not an option. We will never, never, never leave our beautiful baby boy behind.

At Home with Down Syndrome

This article is an absolute must read.

At Home With Down Syndrome

If you get a few moments to take a look and read it, please do.

Back from Philly

We're back from Philadelphia and still recuperating from the 10 day trip.

First of all a HUGE thank you to my mom and dad for their support. My mom came with us to Philly for the first 7 days to watch Mateo and Joaquin while we took the course. This was no easy feat but somehow she managed to do it with grace and even get Mateo's haircut, get him potty trained (at least #1, still working on #2) and take care of Joaquin who was unfamiliar with the bottle but managed just perfectly with my mom in charge. She did this all despite the small living quarters (her bed was in a walk in closet turned bedroom!) and the blistering heat and humidity of Pennsylvania in the summertime. Thank you so much Mom! My dad took care of Diego for the week which included nursing a bee sting he got the first day we were gone- poor little boy! Thank you Papa for your loving care that week. Finally, a GIANT thank you to my friends Gina and Michelle for watching Diego during the week while my dad was at work. Diego had an absolute blast and barely missed us due to all the fun he was having with his friends. You all mean the world to us and I thank you from the bottom of my heart. Knowing all our boys were in good hands gave Hector and I the opportunity to really focus on the course at the Institutes.

So we completed the course "What To Do About Your Brain Injured Child" the first week at the Institutes. The Institutes for the Achievement of Human Potential is located in Chestnut Hill which is a suburb of Philadelphia. It is a gorgeous little town with cobblestone streets and lots of charm. The Institutes is located on a very large piece of property (something like 6 acres) and it is beautiful and green and lush. It was about a mile away from our rented apartment so Hector and I had a lovely walk everyday to and from the course.

The course was everything we hoped it would be and more. When Glenn Doman walked into the auditorium for his first presentation, I was brought to tears. He has to be close to 90 years old and knowing all that he has accomplished in his lifetime and after reading all his books, I was just in awe of him. He is a darling of a man, looks a bit like a "healthy and fit" Santa Claus and I was moved by all his presentations. He is one unsung hero. A wise sage.

We learned so much about the brain- how it can grow by use, how it is stimulated through our five senses, how the functions of the brain can be improved and how it's growth and development is an ever-changing process. We learned that treating the symptoms of brain injury does not work. Brain injury is in the brain so it must be stimulated through the visual, auditory and sensory pathways. We also learned that 99.9% of us have some degree of brain injury so all of us have something to gain in understanding how the brain functions.

Obviously it would be impossible to share everything we learned, there is a book named after the course and I would highly recommend it for anyone interested in brain development or for parents with children who have any developmental delays or concerns. Also, the book "How Smart is Your Baby" is wonderful for expectant parents and parents with tiny babies who want to enrich their babies learning environment. There is also a quick read called "Pathway to Wellness" that summarizes the program and gives a nice overview of the content of the course.

In a nut shell, we learned the vital importance of movement in developing the brain, how important the stages of crawling and creeping are, how to create an ideal environment in the home, how intelligence is not related to brain injury, how brain injury only affects the child's ability to express intelligence, how to increase communication, and the importance of nutrition and how what we eat, drink and breathe significantly affects brain function, growth and development. We also had the pleasure of meeting so many wonderful families all on their own journey with their amazing children.




Jen, Hector, Glenn Doman, Katie Doman (Glenn's wife) Janet Doman (Glenn's daughter and current Director) and Susan Aisen (Director of the Intelligence Programs)

The following week Joaquin was evaluated and assessed by the staff at the Institutes. We determined his neurological age and compared it to his chronological age to come up with his diagnosis. He has a severe, diffuse, bilateral mid brain injury. Based on this information, an intensive treatment plan was created to meet his specific needs. We have a plan for the next 6 months and will return to the Institutes in December for re-evaluation and a new plan based on how he thrives on the current plan. We have physical goals, intellectual goals and physiological goals. As I mentioned in my previous post, the first month is focused on changing our diet, starting vitamin supplements, and getting organized and prepared for the rest of the program which will begin the first week of August. Right now, Hector is busy building a crawling track for the baby which includes an inclined floor. I'm busy going through our kitchen cupboards, making dietary changes and preparing the supplies for the sensory stimulation aspects of the intellectual program. We have also started some simple patterning with Joaquin which we are to do several times a day building up to a minute per session.

We will blog our way through the program so we can share all the different exercises that we will be doing with Joaquin. The key to the program is frequency, intensity and duration so our days will be filled with the many different activities of the program and it is designed in such a way that Diego and Mateo can get involved and help out. The biggest key to the program is to do everything with a sense of joy.



Joaquin waiting for his next appointment

Goodbye Dairy

I officially have to say goodbye to dairy, my one true love.

Anyone who knows me, knows that my diet consists mainly of dairy and dairy products. I LOVE milk, cheese, yogurt, ice cream, cream cheese, lattes, chocolate, whip cream, and did I mention cheese? We found out in Philly that I no longer can have dairy (as long as I'm breastfeeding) and that Joaquin should never be introduced to it as he begins solids in the next few months

This is going to be hard....really hard. All I know is that perhaps those last few pounds of baby weight might actually disappear if I can't have ice cream or a milkshake after every meal.

The only other food that the baby should never be introduced to is corn (including corn products and corn syrup).

There are a few other foods that we should avoid for a period of time (6-12 months) and introduce slowly to watch for allergic reactions and/or intolerances. These include wheat, soy, bananas, nightshades (i.e. tomato, white potato, eggplant, peppers), citrus and peanuts/pistachios and also anything with artificial colors, additives or flavors. Fortunately, this is easy to do with a newborn since we have full control over what he eats as an infant. Hopefully, he'll have no problems with these foods but we'll take it slowly and watch carefully. I have also started taking a good multivitamin, an omega oil (EPA/DHA) supplement and probiotics which the baby will also be on as he transitions to food. He will also need additional B-12 vitamins and folic acid when he stops nursing.

We are considering having the whole family give up dairy products and corn. This will be a challenge but we feel it's the right thing to do. Thankfully there are a lot of non dairy options available nowadays and we'll steer the boys towards sherbets and sorbets when we go to the ice cream shop (this was the first thing that came to my mind!!). Still not sure how to handle Diego's addiction to the vanilla milk at Starbucks, but we'll figure it out as we go.

This is our first assignment and the first part of Joaquin's Intensive Treatment Program that we received in Philadelphia. We learned that what we eat, drink and breathe significantly affects brain function. We also learned that the fluid in the baby's ears may be resolved from dietary changes alone. This would be so exciting. It also gives me the motivation to say "adios" to my beloved milk.

Hearing Test

We had our third hearing test this week with the Audiologist. She did an ABR (auditory brainstem response test) that requires the baby be sleeping with different monitors taped on his forehead and behind his ears. We were in the office for over 3 1/2 hours. Joaquin did great and slept for most of it. I was so incredibly antsy by the end of the test since I had to have the baby laying on me the entire time and I couldn't move or make a noise so as not to wake him.

The bad news is.....he still has some mild to moderate hearing loss in both ears but mainly in the left ear. They determined that this is due to fluid in his middle ear. So although he can hear us, he hears us best when we are right near his face. He hears the rest of the sounds in the house as if he were underwater. The weird thing with fluid in the ears is that it can become thick with time so it is more like a paste and gets harder and harder to drain or evaporate normally from the ear.

The good news is....he has perfect hearing if they bypass the middle ear which means his hearing loss is treatable. So, we will discuss with the ENT doctor about how to eliminate the fluid in his ear at our next appointment in July. This is usually done with tubes but with little ears these are hard to place so they may recommend baby hearing aids until tubes can be placed so he doesn't miss out on any speech development. Also, we were told that Joaquin's ears are not the "typical" ears of a child with Down syndrome so the anatomy of his ears are "normal" and are to be treated this way by the ENT. Such good news.

I have every hope and confidence that his hearing issues will be resolved and I am so grateful for that. We'll keep you posted.

Hit by a Wave

Tonight I was hit by a wave of emotion.

I attended my first seminar sponsored by the Down Syndrome Information Alliance here in Sacramento. It was a presentation on Oral Motor Issues in Down Syndrome Children and it was presented by Lori Overland who is a speech pathologist in Connecticut.

I made a last minute decision to drive to North Sacramento to attend the conference even though Hector wasn't going to be able to make it. I didn't want to miss it so I packed all three boys in the van and we were on our way. I checked the boys into the childcare room that was provided free of charge, grabbed a few pieces of pizza that was also complimentary and sat down to wait for the lecture. A few people stopped to introduce themselves as I made my way to my seat.

And then it hit me. Tears began to well up in the corners of my eyes. I was overcome by a feeling of deep sadness. Waves of emotion were washing over me and I tried my hardest to keep it under control. A part of me felt safe surrounded by the mostly female audience and I thought I might be able to let it out knowing I would be supported. But then it passed, almost as quickly as it came and I felt my strength return. I could hear my dad's famous words in my head "shake it off"....words used to make the hurt go away, to will it away. I'm not sure if I was sad for myself or sad for Joaquin. Probably both. I think I was also hit by the reality of this new life of mine, one that includes seminars on how to help keep "one step ahead" of problems that may arise.

I think it was also a wave of reality. A part of me is still in denial that Joaquin may have hardships and challenges to overcome.

Thankfully the waves subsided and I was able to focus on the topic. The seminar was very good. Somewhere towards the middle of the talk, Joaquin was brought in to the room by one of the childcare providers. He was hungry and wanted to nurse, this was in turn met with many "oohs" and "aahs" as he was the only baby present. I had a few pertinent questions and the presenter made a point to come over to me after the talk to give recommendations on some exercises to do with Joaquin at this very young age to help with his oral motor control. Many of the mothers in attendance remarked that it was wonderful to see that I was breastfeeding Joaquin. A few mentioned that they were unable to do this with their own children and always regretted missing that experience. Many babies with DS have poor muscle tone which includes the muscles in their mouths. Overall there was a great feeling of warmth, understanding and support in the room.

Then it was time to gather up the rest of my gang. Diego and Mateo had a blast in the playroom, made a few new friends, and were happy to see me. They showered me with hugs and kisses and I took the time to soak it all up and didn't rush them as I often do. I felt strong again. We made our way back to the car, all of us buckled up and safe, and drove home.

Books, Books and More Books....

I can't get enough of them.

I just finished reading Jennifer Graf Groneberg's "Road Map to Holland: How I Found My Way Through My Son's First Two Years with Down Syndrome" and it was a beautiful book. I was so moved by her book that I emailed her and she responded back immediately. She even commented on our blog. So exciting! I feel like she is a friend just from reading her book and from her encouraging and congratulatory email.

I have also read and devoured "Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives" edited by Kathryn Lynard Soper. This was an amazing read with 63 different stories and perspectives and I found myself laughing and crying, sometimes at the same time.

In addition to these lovely books, Hector and I are reading Glen Doman's books from the Institutes in preparation for our seminar next week and we are getting really excited about it. "How Smart is Your Baby" was eye opening and I wish I had read the book before I had Diego and Mateo, so many amazing facts and insights. "What to Do About Your Brain Injured Child" is remarkable and shows how dedicated Glen Doman is to bettering the lives of all children. I can't wait to meet the author and his staff next week.

We just received the book "Expecting Adam" by Martha Beck in the mail from a dear family friend, Jane, who also sent us "Gifts" and "Road Map to Holland"- thank you Jane! Martha Beck is a contributing author for "O" Magazine and has appeared on Oprah a few times. I read this book about 6 years ago, just before I had Diego, and it really struck a cord with me. I can't wait to read the book again with "new" eyes.

All these books have been a lifeline for me the past month and are part of the reason I am so happy, hopeful and proud to be mother of a child with Down syndrome. I truly believe that these books would be just as special to all mothers and I would recommend them to anyone who is mesmerized by motherhood or for moms who have lost touch with the joys of parenting and are looking to reconnect with the special gift of raising children, Down syndrome or not.

Here is another video that I fell in love with and just have to share with all of you that kind of sums up everything I got from reading my books...get your tissues ready!

So You Think You Can Dance

Another post from Hector...

There have been a handful of people telling Jen and I about this boy with Down Syndrome that was on "So you think you can dance" a few weeks ago and I have been avoiding seeing it for one reason or another. Everyone knows I have a special place in my heart for people with DS, especially kids, they are so sweet and cute. But ever since Joaquin's diagnosis, it is a touchy subject for me. I know I am interested in knowing other people's experiences, but sometimes it is a hard reality that I am not fully comfortable with, not yet anyway. I had a lot of anxiety seeing Andres for the first time since we learned that Joaquin had DS . I love Andres dearly, but I knew I was going to see him with different eyes, like peaking into the future and I was afraid to do so. I am afraid still. I would love to be OK in that respect, but I can't help but still feel some anxiety and fear about the future.

Yesterday Jen was watching some videos on You Tube and she casually told me to watch the SYTYCD video. I did and I loved it. It was very sweet. I guess I was afraid someone was going to make fun of the boy or patronize him, but it was not like that at all.

I know that Joaquin is going to grow and do great things in his life, I can feel it in my heart. Someone told us that people with DS are born for a reason, that they have a special purpose in life. I believe it. We know that he can't wait to start talking because he has lots and lots of things to say, I can't wait...

The Institutes

A post from Hector....

When Andres was born, my sister Silvia and brother-in-law Carlos did what every parent in such a situation would do- they tried to learn as much as possible about what having a child with Down syndrome entails. Eighteen years ago, it was not as easy as today simply because the Internet was not around, so it all came down to whatever the doctors were telling them, or word of mouth since everyone knows someone who knows someone who has a child with DS. I remember at that time being so clueless as to what DS really meant. My only exposure to someone with DS was a boy named Pablito who hung out at the corner store near my house in Mexico City. All I remembered about him was that he was friendly but strange and I felt uneasy about it.

My sister found out about the Institutes when Andres was a few months old. Someone knew a girl who lived in Monterrey, Mexico, who was doing some kind of program from some Institutes in Philadelphia. They went to see her and were immediately hooked, they had found the answer to their prayers, a light of hope for Andres' future.

The Institutes for the Achievement of Human Potential is the official name and it was founded by Glenn Doman. The Institutes offer an intensive program for brain injured children and its objective is to achieve physical, intellectual, and social growth towards normality. There are several steps that must be taken to be considered for "The Intensive Treatment Program." First, both parents have to attend a 5 day intensive workshop called: "What to do about your brain injured child" which teaches parents about the field of child brain development. Jen and I will be attending this course in Philadelphia at the end of June. The second step is called "The Home Program Consultation", in which we would create a home program based on what we learned in the course. This home program is a requirement to be considered for the next step, "The Aspirant Program", that consists of a 2 day appointment at the Institutes where they do a thorough evaluation. Joaquin would then receive a specific program designed by the staff of The Institutes to achieve physical, intellectual, social and physiological wellness.

When Jen called to get information about the course in June, they offered us a chance to have the evaluation appointment immediately following the course since we live in California so we can minimize the flying back and forth to Philly. This was a huge surprise to me since I know that it took at least eight months for my sister to get an appointment for Andres. We are so lucky to be able to have Joaquin evaluated at such a young age and have them create a specific program for him based on his exact needs. They also made this exception because of our familiarity with the program, our enthusiasm and the fact that we had done some of the program very casually with Diego and Mateo after reading many of their books.

There have been a few people who have asked me why we think that Joaquin has a brain injury? Brain injury, according to the Institutes, is due to forces from outside the brain itself rather than to any inherent, preconceptual, built-in deficiency. A child with Down Syndrome has a malformation or abnormality of the brain on the basis of a genetic disorder. This brain-injury falls into the "Mentally Deficient" Brain-Injured Child, formerly called "mentally retarded". We now know that although the brain may appear structurally different, it will respond to stimulation and treatment. These children are candidates for a neurological treatment program, and that is why children with Down Syndrome do so well in this program.

We are very excited to have this opportunity to go to Philadelphia and learn more about how to help Joaquin, but especially to have him evaluated by the staff of the Institutes. I know the journey that Andres and his family took and that much of his success and how happy and fully functioning he is today is due to his involvement in this program. We are thrilled that we have all of his experience as a resource and a benchmark. Also, we are forever grateful to my brother David and my brother Sergio who are helping us financially to be able to do this since it is not covered by insurance.

We have started some of the exercises with Joaquin already. He is on his belly for most of the day (and he sleeps on his belly at night) and he was able to try out the "crawling track" while we were in Mexico (pictured above). We do a lot of different stimulation exercises and so far he is thriving and responding as he should. He is currently meeting all of his milestones for a baby at 4 months old which is remarkable. The only weakness we see so far is his neck control when held in a sitting position but we are starting to see some gains here as well. He LOVES to talk and babble and has even started to mimick some of the sounds that Jen makes. Any hearing loss he may have due to fluid in his ears has not hindered his speech development. It's all very exciting. We will definitely keep you all posted on all of his progress.

Band of Brothers

The very first thing Diego does when he gets up in the morning..every single morning... bright eyed and bouncing down the hall, is to come searching for Joaquin who is usually in bed with us by this time and he covers him with kisses and hugs. Mateo usually comes stumbling in after, the sleep still in his eyes as he is more of an "ease into the day" type of guy, and looks for the baby so he can greet him as well. "Mama's Little Baby" he calls him, even though I try to convince him he's still my baby too. "No" he always says, "I'm the brother!" These two big boys of mine can't get enough of the baby and literally have their hands all over him.

I wonder what it must be like to be Joaquin and to have all these faces each and every morning to look at, these adoring faces that can't get enough of his smile and his cooing and squeals. He is so lucky to have two older brothers.

We've started to try to explain to Diego that his brother has Down syndrome. Diego is 5 and going to Kindergarten in the Fall. This is a hard thing to explain to a child but so far Diego is unfazed by it. It's just another piece of information about his brother that doesn't change a thing about the way he feels about him. His response so far has been "Ok mom!", as if I just told him that his brother has brown hair and blue eyes. I love this age of innocence and acceptance. I know that this won't always be the case and that there may be prejudices that he and Mateo will be exposed to in everyday life. But I also know that both boys will grow up with a strong sense of compassion that is often hard to teach children but will come from having a brother with Down syndrome. I've spoken to friends who have siblings with special needs and they all say without a doubt that it has made them a better human being. A few days after Joaquin's diagnosis, Santiago, Hector's nephew who is 13, called to see how we were doing. He was very sweet and in a shy way tried to tell Hector that everything will be OK. He said that if given the choice of his brother Andres being "normal" or with DS, he would choose Andres with DS every time.

My hope is that this band of brothers stays strong. I know Hector and I have a big job ahead of us, a huge responsibility to teach them all how to get along, love each other and respect each others differences. I don't know what the future holds for Joaquin but then again I don't know what the future holds for Diego or Mateo. I have to remind myself when I get worried about the road ahead of us that just because we know that Joaquin has an extra chromosome doesn't mean we know the rest of his life story or that his life will be somewhat predictable because of it. My hope is that all three boys have every opportunity to reach their dreams, their aspirations and their full potential which will undoubtedly lead to their happiness.

In the far distant future, there may come a time when either Diego or Mateo will have to care for Joaquin, when and if we aren't able to, and my dream is that they will want to, not out of obligation but because they love him so dearly as they do now....every single morning.

Such a Blessing

I feel like it was a blessing I didn't know Joaquin had Down syndrome until just recently.

I opted not to do the AFP screen in my first trimester when it was offered. I just didn't feel inclined to do it. I remember thinking that I didn't want to have to deal with the stress involved with getting a positive result, or a false positive result...or a false negative result. So I just declined it. I did agree to genetic counseling and I did do an early 9 week ultrasound and another more in depth ultrasound at 20 weeks. The ultrasound showed us a healthy baby boy that was growing on time, had a strong beating heart and all his appropriate parts. No cause for alarm.

I declined the amniocentesis even though it was recommended by my doctor. I was 36 when I got pregnant and would be 37 when the baby was born which put me at a higher risk for having a baby with a birth defect. If I had gone through with the test, I would have been bombarded with information about all the negative aspects of Trisomy 21, the health scares, the worry, the stress, the sadness, and the option to terminate the pregnancy based on the diagnosis. I'm not sure I would have been told about the joy, the gift and the beauty of my imperfect child. 

It's a blessing I got to spend my pregnancy without any stress other than the normal stress that comes along with the third trimester, like how much more weight will I gain, what should we name him, is the nursery ready, do I have enough burp cloths? Because I didn't know about Joaquin's diagnosis, I was able to have an uneventful delivery (albeit a speedy one!!) with the normal joys, pains and anticipations that come with giving birth to a baby and I was able to have the normal, special bonding time with my newborn. Those special moments in the middle of the night just the two of us getting to know one another. I was able to marvel at his beauty and perfection without doctors or nurses coming in to tell me otherwise or to point out the physical markers or "imperfections" or to hear what may or may not be wrong with him. He wasn't whisked away to spend hours in the NICU for observation or tests, he was able to stay by my side, right where he was supposed to be.

It's a blessing that even though I had that first instinct about Joaquin, that no one "saw" anything so I was able to have a positive hospital experience and about 2 1/2 months of time to love and connect with my newborn son without any labels or worries or sadness. I can honestly say that despite the unusual circumstances around how we found out about Joaquin that I wouldn't have had it any other way.

It's a blessing that everything happened just the way it did...it was exactly as it should have been. We see Joaquin for who he is, not what he has. He is our third amazing, beautiful son. We are so blessed.

A Perfect Heart

We saw the cardiologist last Friday for our first of many specialist appointments to monitor Joaquin's health. Children with DS have a 50% chance of having heart issues sometimes leading to surgery. We were thrilled to find out that Joaquin has a perfect, normal heart. The doctor said there is no need to see her again. Check that one off the list! We're hoping it's the first of many healthy reports to come.

Welcome to Holland

I found this piece during my search for answers and information about Down syndrome shortly after Joaquin was diagnosed. It gave me immediate comfort and a new perspective. I hope you enjoy it.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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 Colosseum. 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.