On February 2nd at 4:59 AM, our third beautiful son Joaquin Andres Sanchez was born. On May 2nd at 4:59 PM, his three month birthday, we learned that Joaquin's cells have the presence of an additional third chromosome 21 or "Trisomy 21" also known as Down syndrome. Join us on our journey as we discover that three is definitely a charm.
Here is the photo we chose for our Christmas card this year. It was a last minute decision and it wasn't the best photo of all the boys but try getting three boys to cooperate during a photo shoot. Impossible!! We chose this photo because the baby's smile is so contagious. You can just see the love of life in his face. Diego is thoughtful as usual (although he doesn't like this photo because you can't see his whole face) and Mateo rarely smiles for the camera so his is par for the course. I love it just the same!
I have yet to get all the cards out to everyone and Christmas has come and gone so just in case... Happy Holidays to everyone!
While we were at the Institutes, Joaquin was re-evaluated and received a new treatment program that we will be doing for the next 8 months. Like Jen mentioned in the previous post, it is an intense program that still consists of some sensory stimulation, but the key parts this time are the intelligence program, masking, crawling and hopefully creeping on hands and knees soon. A big part of it will be a reading program with some math and encyclopedic knowledge. We are able to start the intelligence program since Joaquin's vision is now perfect for his age. Even though his convergence is still not resolved, he is able to use both eyes consistently and we should see some big improvements with his convergence in the next few months.
We met with Susan Aisen on Monday, she is the director of the Institute for Intellectual Excellence and is one of Joaquin's advocates. We walked into her office and the first thing that she said was that sometimes there is not a match between a family and the Institutes or that sometimes the program is too much for families or the communication between the Institutes and the family is not working out. At that moment my heart stopped, I honestly thought that she was going to let us down gently and tell us that we weren't a good match and could not continue working with them. But then she mentioned that we had been accepted to be in the Intensive Treatment Program and that they were thrilled with our progress and dedication. The last six months we've been in the Aspirant Program, it is basically the same program but it's a trial period to make sure that this is the right thing for our family and that we can work together. We were very happy to hear that we had been fully accepted into the program!
One of the things I love about the Institutes is how positive they are. Most of the staff have been there for decades and have seen thousands of children get better and amount to great things. They can barely contain their enthusiasm as they tell you the success stories and how you can do so many wonderful things for your child with their methods. Can you image going to your pediatrician and hearing you can make your baby with DS well with certain therapies, does that sound likely? It is so incredible that doctors focus so much on diagnosis and the symptoms instead of therapy or what is available for parents. Most professionals are busy telling you all the problems that you have to face and all the dire predictions of a life with a child with Down syndrome. The biggest hope you get from them is that people with DS can hold very simple, basic jobs and can possibly live semi-independently in a group home situation. They say it with a smile on their face as if we are supposed to jump for joy. I don't know about you but I will not settle for that, to me that scenario is a failure on our part as parents.
Children with Down syndrome were not always treated at the Institutes. They were included as a result of the work of Dr. Raymundo Veras, a brilliant doctor in Brazil who first found the Institutes while looking for help for his son who became quadriplegic after a diving accident. He later founded a branch of the Institutes in Brazil and it was the first place to begin working with children with DS. He convinced Glenn Doman (the founder of the Institutes in Philadelphia) that his methods worked for these children. Dr. Veras treated thousand of children and his legacy is so big that they started calling the children "Veras" kids instead of children with Down syndrome. He died in 1975. In his book, "Children of Dreams, Children of Hope", Dr. Veras writes about the Institutes and how he met Glenn Doman, but more importantly the second part of the book is about "How to Make Mongoloids Well." The word Mongoloid today is unheard of but one must take into consideration that this was written more than 30 years ago. It is amazing to me that the Down syndrome community isn't more aware of his work and the successes his children were able to achieve. Here are some of the questions he answered in the book:
What is the major cause of mongolism? I believe the major cause is prenatal brain injury.
What area of the brain is injured? I think the injury is in the midbrain and the cortex though I'm not sure. I know that the mongoloid brain looks different than the average brain. Surely our concern should be the material and the quality, not just the appearance. So if you ask me if I know without question that all mongoloids brains are injured in the very same way or in the very same place, then I would have to answer. "No, I do not know this." And though I think those are important questions that require answers. I don't think that mongoloid children need to wait for the answers before they are helped. The most important question is whether we can improve the children's mental and physical conditions. If we can change the mongoloids conditions then he moves out of the deficient category and into the brain injury category, which is a much nicer and more hopeful place to be. If you ask me if I am positive that mongoloids are brain injured in the classic sense, I have to answer. "No, I am not". But if you ask me if I am positive that they are not deficient. I'll answer, "I am almost positive that they do not have deficient brains" I do not have the slightest doubt that they can be helped, for I have seen their lives enhanced and their abilities improved. I have seen them enter normal school with normal children. I have seen them become normal people.
Are the conditions of mongoloids hopeless? I have spent the last sixteen years of my life-seven days a week, eighteen to twenty hours a day- living intimately with brain injured children and their problems. I can never understand how some doctors can make the most devastating predictions about a child's life. In the past, mongoloids have been victimized by reasoning such as, "Mongoloids are mentally retarded, mental retardation is an incurable disease; therefore it is impossible to make mongoloids well." That line of reasoning makes me want to vomit. That line of reasoning turned brain-injured children into mongoloids
Are mongoloids mentally retarded? This is a question of false nicety. By merely asking it, one implies that mongoloids are not bright. Would one ask if normal people are mentally retarded? Of course not. Then why ask if mongoloids are mentally retarded unless one believes that the answer is yes. Well, it isn't yes. The answer is NO. Mongoloids are not mentally retarded about the world, the world is mentally retarded about mongoloids. The truth is, most mongoloids are very bright children who happen to be brain-injured.
Are most mongoloids in worse condition than other brain-injured children? In many ways mongoloids are often in much better physical and mental condition than many other brain injured children. Mongoloids are not crippled as athetoids. Their actions are not as repetitive as are the autistic child's. Their muscles are not rigid, and in most cases they are very bright children.
Should parents be satisfied to let a child develop at his own rate of speed? Only if they do not want him to become normal. The brain-injured child's best chance is his parents dissatisfaction. Their unwillingness to accept his condition as unchangeable is often the only thing that saved the child's life. I use to hear about Freudian attitudes such as "Don't be 'pushy' parents or your child will have emotional problems". Mongoloid children cannot afford emotional problems. When have you heard of a mongoloid with emotional problems? Let's make these kids well, and then we will worry about their emotional problems. It is easy to fix the emotional problems of well kids.
Do parents of mongoloids have emotional problems? I hope so. I hope their biggest emotional problem is that they love their child. However, if that question means, "Do they have psychological hang-ups?" then I would answer, they certainly should have. If they have a hurt child who is not getting better, and if his chances of getting well are becoming fewer and fewer and smaller and smaller every day, and if the parents are not psychologically disturbed, then something is very wrong with them.
And it goes on and on, I find his work fascinating and thanks to him Joaquin and other children with Down syndrome are on their way to wellness.
On a side note, you notice that he uses the word "Mongoloid" instead of "Down syndrome", even though he thinks mongoloid is a rotten label, one that is inappropriate and demeaning, he says that Dr. Langdon Down's only contribution was to simply list out how these children are different from "typical" children. Down syndrome was not meant to be a diagnosis but just another label, like mental retardation or cerebral palsy. Down syndrome is not a diagnosis, it is a description of the symptoms or the results of a mental problem. I do not find that Down did anything to make these kids well, he merely listed the things that were wrong with them. Whenever we heard staff at the Institutes talk about Veras kids, we couldn't help but feel a sense of pride and hope in that description.
Now for the Results:
Directors Statement of progress to date
1. Neurologically: This period Joaquin has made excellent improvement in quality and quantity. Overall his growth rate compared to beginning was 256%.
6. Victory: (i.e. crawling, reading, etc.) Not this time.
Measurements: Height rate of change was 86.4%, Chest rate of change was 128.2%, Head rate of change was 80.0%.
What does this mean? Well, as you can see his chest grew at an accelerated rate due to the increased movement going down the crawling track over and over again. Now with the new program and his more intense Intelligence program, we will hope to see a significant jump in his head growth.
This has been a long post but I have one more thing on my mind. Every time we go to Philadelphia we get to meet the same group of people and sometimes a few new families. It is a great joy to see the other kids and their progression and talk about the trials and tribulations of being an Institutes Family. It is outstanding that most of these families come from far away, many from Europe, Latin America, Singapore and some from the far or middle East. There are a few American families as well and one common question we keep asking each other is "How did you learn about the Institutes?" The answer is different each time, and it is amazing to me that most of the time it is by chance or from a desperate search for answers on the Internet. That moment in time when they make the decision to learn more about the Institutes is one that changes the family's life forever.
Why do we share our story in this blog? At first because we wanted our family and friends to know how Joaquin is developing, but now we hope that there are other families that could benefit from our experience. We are not saying we are experts, but if we can help and support each other, and at the same time rejoice in each others victories, we can all benefit. Our hope is that it will enrich our lives and the lives of others. After all, we are all in this together.
Baby Bear Joaquin on our way to Philly on the plane.
Maxima is 3 years old with Down Syndrome, she is sooo cute!
Thanks to Abuela Lucha for being so patient and taking good care of Joaquin.
Joaquin having fun in the snow.
Trying to take a group photo with our host family. Many thanks to the Kriger family for their hospitality, they are such a lovely family.
Mama having fun with baby...until he has had enough.
On Friday, at the Institutes of the Achievement of Human Potential, Hector and I attended a lecture on Intelligence and were told that "Veras" kids (that's what they call children with Down Syndrome) are EXTREMELY intelligent. They mentioned that Veras kids are some of the brightest kids they work with and that the professionals have it all wrong. They are NOT mentally retarded. Not at all. They are perhaps too witty at times and this can lead to behavior problems because they are so smart and they know how to manipulate their parents and other adults with their charm or by playing the "baby". And some adults fall for it because they assume the children are "mentally retarded." The staff at the Institutes do not consider children who can read and do math at age 3 and have incredible encyclopedic knowledge to be "mentally retarded", they consider them gifted and talented human beings.
It was Susan Aisen speaking to our group. One of our favorite people at the Institutes that happens to be one of Joaquin's advocates and she has worked with children with DS and other brain injuries for over 30 years in Philly. She has walked the walk so she can talk the talk.
Hearing this was like taking a deep breath of fresh air. I can't tell you how inspiring her words were for us. We needed this lecture series. We needed to be here. We needed to hear those words from a professional. And we know she is telling the truth. Even at 10 months old, I can see the wisdom in my son. I can see he is bright, eager to learn and full of the greatest potential. All we need to do is provide the opportunities for him to learn and more importantly while he is still so young.
We still have two more days in Philly where we will get our new treatment program for Joaquin. It will include a reading program, a math program and an intelligence program in addition to the physical and physiological programs such as crawling, creeping, patterning, masking, etc. After attending these additional lectures, we are even more knowledgeable about the brain and how it works and how it grows. Joaquin is the perfect age to begin all these programs and he is going to LOVE it! We know he loves to learn and he is so eager for it. I just need to figure out how to keep up with him (and his program!!!) I'm going to need a lot of coffee and a much better organizational system at home in order to get it all done. What is also so great about this is that Diego and Mateo will benefit as well. It's a win win for the whole family.
So we are getting ready for our second visit to the Institutes in Philadelphia. We leave December 9th and I'm getting together all our documentation, videos and notes to report back to our advocates. I have to admit that it's been hard to keep up with all the things they intended for us to do. Life sometimes gets in the way.
I'm excited for our friends at the Institutes to see Joaquin. He really has accomplished so much in the past 6 months. I still can't believe he will be 10 months old in two days. He is such a different baby than he was 6 months ago but then again isn't the first year of a baby's life the most amazing transformation. I wonder how much of it is just Joaquin and how much of it is the work we've done together.
As I prepare for our journey to the Institutes, I can't help but think of all the things he hasn't accomplished and I know I need to be patient. Things are always going to be a little bit harder and take a little bit longer for Joaquin. It's difficult sometimes to see other children the same age as Joaquin, or even much younger, that are developing and accomplishing things that are taking him so much longer to learn. Even simple things like spoon feeding which is a big effort for us and comes so easily and naturally for others. Then there is the crawling....Joaquin is still only arm crawling when he wants to but hasn't figured out that it's a mode of transportation. He hasn't really taken off with the skill and I was secretly hoping he would be by now. I look at my niece Jolie who is spoon feeding easily and crawling on hands and knees all over the place and she is 6 weeks younger than him. I'm truly in awe of her ability to do these things and now I appreciate these accomplishments so much more than I ever did before. I just marvel at how easy it comes to her and how hard it is for Joaquin. He works so hard. You should see him pump his legs and arms in the air on his belly as if somehow he will fly across the room. It's adorable but heartbreaking at the same time.
I need to be patient, however, sometimes I can't help but feel like I'm responsible for his delays or that somehow I'm a failure as a mother if he isn't hitting these milestones. I completely understand that every child meets their own milestones on their own timeline but having a child with special needs puts a slight twist on that. It's like a race against time. You don't want your child to fall too far behind.
Despite the delays, I am so proud of Joaquin and we celebrate together every day. We celebrate the little things, the everyday things, small accomplishments and the big ones too. We celebrate how much more interactive and alert he is. We celebrate that he can hear all sorts of sounds....even the scary ones. We celebrate how he flirts from the grocery cart seat at shoppers passing by. We celebrate every little sound he makes, every movement, every single little thing. So even though I still need a lesson in patience, I know I will get there. I have the best teacher in the whole world.
Thank you Joaquin.
Reading his bits of intelligence Coming down the crawling track He sees his favorite bits He is going to get them Look! it is a surprise face... I love my bits
We were very brave and ventured out to the mall on Black Friday to visit Santa....and there was no line to see him. Very strange.
He wasn't the most convincing Santa and he kinda looks a little sinister in this photo. Joaquin was mesmerized by his beard and had his hands on his face but the photo people (a.k.a. Santa's elves) wanted him to look at the camera. So they proceeded to make a bunch of noise and whistling sounds to get his attention and when Joaquin turned to look at the camera, he looked a bit stunned by all the commotion. No tears were shed but at one point, Joaquin was squinting from all the noise. My guess is he is still adjusting to the increase in volume in his ears. It was also a very stimulating environment with all the lights and decorations.
I would have preferred a shot of him gazing at Santa (how sweet would that be!!!) but the elves wanted nothing to do with that. Apparently you don't have a say as to which picture you get.....as Diego and Mateo would say "you get what you get and you don't throw a fit!"
Is it OK to hope for a story like this to be written about Joaquin someday? But maybe with him in a Jesuit High School soccer jersey? Perhaps a Christian Brothers baseball uniform? Who knows.....all I know is that I can't wait to find out the script for Joaquin's life.
Here is Joaquin right before his surgery last Thursday. In a nutshell, the surgery was a success. The doctor said that she found lots of thick fluid stuck in his ears. She was able to suction it all out and then placed itty bitty ear tubes to help drain any more fluid that might build up. She said that Joaquin might be extra sensitive to the sounds around him and that he would be hearing clearly for the first time in his life. She said we might even need to keep the cotton balls in his ears for awhile to muffle some of the noise around him.
Joaquin recovered beautifully from the anesthesia and spent a good 30 minutes when we got home exploring every single toy and noise maker in his room on the floor. It was amazing to watch. Then.....his brothers arrived and a whole new volume level was experienced and the tears started. Joaquin is crying like he's never cried before. The sounds are startling and new and maybe even a bit scary for him. And even though it breaks my heart to hear him cry, I smile inside knowing it's because he can actually hear everything around him. We are so happy and can't wait to see the progress he will make now as a result of the successful surgery.
We'll keep you posted. GO JOAQUIN!!!
Joaquin on his way to the operating room....they only had pink pajamas.
Happy 1st Halloween Joaquin! Who needs toys when you have candy? Here is our boy playing with his brother's candy after a fun night with friends around the neighborhood. It was a wonderful night.
Thank you to all our faithful readers for "hanging" with us during this 31 for 21 posting challenge. I'm happy to say we were able to complete the challenge and it was an honor and a joy to do so.
Last night Jen went out with her girlfriends and I was in charge of 3 kids and the daily post. All 3 kids went to bed like usual, no problem. Joaquin did his normal talk routine right before he fell asleep, very cute. So I turned my powerbook on and started thinking about something to write. I was having trouble thinking of something, so I decided to check some of the blogs that Jen follows. I found this post by Jennifer Groneberg from Pinwheels, the author of the book "Road map to Holland", about a beautiful Down Syndrome Awareness bracelet made by the talented Amy Flege, and she was giving it away to a special mom. All you needed to do was post a comment, so I did for Jen. I thought that it would be a great reward for her special effort to post every day of this special month.
This morning when I got to work, I had an email from Jennifer Groneberg telling me that we won the bracelet. I was so thrilled and I am so excited for Jen to have it. I think she deserves it. So Jen, it is coming in the mail. Thanks for being such a special mom and a loving wife!
Tonight the boys and I decided to carve the pumpkins in preparation for Halloween on Friday. Joaquin was in his bouncy seat in the kitchen, Mateo was on a stool so he could watch cautiously and my big boy Diego was elbow deep in pumpkin mush trying to save the seeds for his Papa to roast later on for snacks.
We went out to the front porch to see the finished products in their full candle glory and lo and behold there was a little package waiting for the boys with a big BOO sign on it. Someone had anonymously left a very thoughtful gift bag for the boys with instructions on how to keep the BOO going in the neighborhood. The boys were so thrilled and ran around the house shouting we were BOOed, we were BOOed!!! Joaquin was smiling in his chair sensing all the excitement in the house.
I couldn't help but smile too. We are a NORMAL family! I know this might sound silly and crazy but another one of my early fears after learning about Joaquin's diagnosis was that our family might not be fully accepted in the community or that we would feel isolated and alone. I worried that my friendships would change or disappear. I worried that possibly Diego and Mateo's friendships would be affected. I feel ridiculous writing this now but these were some of the terrible fears that just bombarded me very early on.
Thank God these fears were unfounded and honestly, it's been quite the opposite experience. Since learning about Joaquin's diagnosis, I have felt more of a community around us than ever before. I feel the love and support from neighbors, friends, and even strangers in this wonderful online blog community. I look forward to raising my kids in my neighborhood, literally surrounded by great families with huge hearts. I can't wait to watch all the neighborhood kids grow up together and to have Joaquin be someone they all adore and protect. Suddenly the world is a feeling like a kinder, safer, sweeter place for us to live in.
And all it took was a little BOO sign to remind us of this!
I really want to see this movie so I've put in a special request to Netflix to see if they will buy a few copies and make it available to the public.
Here is a synopsis of the movie:
An unconventional love triangle between three childhood buddies; two girls, one born with Down syndrome, and one boy, who all grow up fighting who they are inside, how they are perceived by society as a whole, and who they ultimately strive to become as individuals through the obstacles that are inherently present.
Mr. Blue Sky is a ground-breaking film that explores the romantic relationship of a woman born with Down syndrome and a "normal" male, as perceived by today's society. Mr. Blue Sky attempts to break down society's barriers, much like "Guess Who's Coming To Dinner?" did in the 1960's, as it aims to "change lives" through "changing minds."
Mr. Blue Sky is a heart-grabbing story that will ultimately change the way society views all people as "individuals" first and foremost.
The title is derived from a little girl's hope and love through the sun (Mr. Blue Sky.)
I'm intrigued by this movie. It touches upon some of the early fears I had and still have for Joaquin as he gets older. One of the first things I mourned when I learned about his diagnosis was the idea that he would not get married or have a family of his own. I now know that this is a possibility for him (the relationship part) but I can't help but worry still. I don't ever want him to be lonely. This has to be my greatest fear for him. I don't want him to be isolated or alone in this world. I want him to love and be loved forever so the thought that he might find companionship with someone very special and/or ultimately fall in love would be priceless to me. I will just have to buy this DVD if Netflix doesn't follow through on my request!
In honor of Down Syndrome Awareness month, I'd like to take this opportunity to address the myths commonly associated with DS. I copied this from the National Down Syndrome Society website.
Myth: Down syndrome is a rare genetic disorder. Truth: Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.
Myth: People with Down syndrome have a short life span. Truth: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.
Myth: Most children with Down syndrome are born to older parents. Truth: Eighty percent of children born with Down syndrome are born to women younger than 35-years-old. However, the incidence of births of children with Down syndrome increases with the age of the mother.
Myth: People with Down syndrome are severely “retarded.” Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.
Myth: Most people with Down syndrome are institutionalized. Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.
Myth: Parents will not find community support in bringing up their child with Down syndrome. Truth: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.
Myth: Children with Down syndrome must be placed in segregated special education programs. Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.
Myth: Adults with Down syndrome are unemployable. Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.
Myth: People with Down syndrome are always happy. Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.
Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage. Truth: People with Down syndrome date, socialize and form ongoing relationships. Some are beginning to marry. Women with Down syndrome can and do have children, but there is a 50 percent chance that their child will have Down syndrome. Men with Down syndrome are believed to be sterile, with only one documented instance of a male with Down syndrome who has fathered a child.
Myth: Down syndrome can never be cured. Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.
Joaquin already has a Best Friend Forever and her name is Jolie. They are cousins and are only 6 weeks apart. It's going to be so much fun watching these two grow up together and we know they will share a very special friendship.
Here are a few photos of us....Jennifer (my sister in law- yes we have the same name!) holding Joaquin and I'm holding Jolie, J & J head to head on the day they met (Jolie is only a few days old) and naptime for the two little ones in the same pack-n-play crib.
There is no denying that Nana and Joaquin have a very special bond. He lights up whenever he sees her and she is the only one that brings out his devilish side! He loves to try and "love bite" Nana- all over her face! He's like a little tiger when he's in her face. We are so fortunate to live so close to my parents and that he gets to see Nana and Grandpa almost every day. He goes through Nana withdrawl when she goes away on vacations.
Here's are few photos taken today with Joaquin and his favorite Nana!
I thought I'd post the most commonly asked question even though I still don't have a clear cut answer for it. Friends, families and strangers always ask me if there are different degrees of Down syndrome- mild, moderate or severe. They'll ask me if there is such a thing as a mild case of Down syndrome. I think people are assuming that Joaquin has a more mild version of DS based on the fact that he was not diagnosed right away, the fact that sometime it's hard to "see" it in his face and the fact that for the most part he's on target developmentally.
Joaquin doesn't have a mild case of DS he just has Down syndrome. I'm really not sure how else to answer this question but it will be one of the first questions I ask next week when we visit Dr. Wardinsky, the lead doctor at the Down Syndrome Clinic at Alta Regional. This will be our first visit to a doctor who deals exclusively with children blessed with a little extra....a little extra chromosome.
There is no such thing as a mild case of Down syndrome- your genes either have three 21st chromosomes or they do not. But how that manifests itself will be different on each and every person and that person may have mild, moderate or severe symptoms. I saw it written somewhere online that it's similar to asking "Are you mildly pregnant?"...you are either pregnant or you're not. Maybe a good analogy is that no two pregnancies are the same.....sometimes you have insomnia, nausea and stretch marks and sometimes you only have weight gain and varicose veins or very few symptoms at all. With DS, no two children are the same, sometimes you have heart problems, typical facial characteristics and low muscle tone and sometimes you only have a few facial features, a little hearing loss, a mild strabismus or very few symptoms at all. One must also remember that the rest of Joaquin's genetic makeup, the rest of the 44 chromosomes have come from his parents so that's why he'll still resemble us and his siblings. He will also possess our strengths and our weaknesses much like our other children do. He will just have additional challenges based on how the Trisomy 21 affects his brain and his body.
Then there is the issue of how much control we have over his sensory stimulation in order to help his brain compensate for any injury caused by his Trisomy 21.....which we've written about in previous posts and is the main focus of the program we are doing with the Institutes as well as the therapy services provided through our Regional Center.
I will always welcome this question because I feel that this is one way that I can help education and advocate for my son and his peers. I hope to learn more every day about Down syndrome so I can share the most accurate information with those around me and increase the awareness. Just a few days ago, I felt compelled to put a Down Syndrome Awareness Ribbon magnet on the back of my car. I've never done anything like that before. Bring it on.....the questions, that is!
Here is an adorable photo of Mateo peering in at the baby in the crib. I think Joaquin was close to 3 months old and Mateo was finally warming up to having a baby brother. I love this photo.
Here is our family of spiders- The Red Spiderman is Diego, The Black Spiderman is Mateo and of course the spider is Joaquin. By the way, I'm truly afraid of spiders....huge case of arachnophobia! It's so ironic that I have a household of boys who are obsessed with them. Diego really wants me to dress up as Mary Jane on Halloween night and he wants Hector to be Peter Parker....we'll see!
My Grandma Eleanor passed away earlier this year when Joaquin was about 6 weeks old. I had a very special relationship with my Grandma. She helped raise me as a child when my mom was working as a nurse to put my dad through law school. We even lived with Grandma for the first 3 years of my life in a house just down the street from where I currently live.
I remember getting a phone call from my mom a few days after Joaquin was born, those early morning calls that are always dreaded, that Grandma wasn't doing very well and was in the hospital in Truckee. I knew the moment I got that call that I was going to drive up there with Joaquin to make sure she had a chance to meet him. He was only a few days old but I wanted to see her immediately. Fortunately, Hector was home from work for the week so he stayed with Diego and Mateo so I could go with Joaquin and the rest of my family to see Grandma without the distraction of two little boys running around the hospital.
She had had a rough night so we weren't sure how lucid she would be when we saw her. Fortunately, on the drive up to Truckee, we heard that she was stable and would probably be released back home later that evening so I was able to relax a bit. I had taken special care to dress Joaquin in the softest powder blue baby gown and cap with a matching blanket. He looked angelic. I remembered the first time I introduced Diego to Grandma and had made the mistake of dressing him in jeans and a Stanford sweatshirt.....I never heard the end of it! "Babies don't belong in jeans!" she used to tell me. It was part of her dry Irish humor. I wasn't going to make that mistake again.
I was so eager to see Grandma but mostly for her to meet Joaquin. When I entered the room, she was very surprised to see us and then was a little upset I had brought the baby to the ER where all the "germs" are...."He should be home in bed!" she told me. There was my Irish Grandma. But she immediately softened when she saw him and it was such a special moment when I was able to introduce him to her.
I carefully laid him in her arms, careful not to put too much weight on her, but still allowing her to feel his body in her arms. I don't remember all the exact word she said because I was lost in the moment but I do remember one thing very vividly. She said something about him being beautiful and perfect. She stressed how amazing it was that these little babies turn out so perfect, how rare it is that anything is wrong. I remember agreeing with her as we both just stared and smiled at the baby.
My grandmother lost a baby shortly after birth and she never ever talked about it. My dad had told me a few years ago. I do know that Grandma wanted to see her baby again and talked about him when she was close to passing. I'm sure her comment to me about how rare it is that anything is wrong had a lot to do with her loss. I have to imagine that whenever she saw a healthy baby, she saw a miracle. I can't imagine the pain of losing a child, the pain she must have carried silently with her. I know she loved her grandchildren and her great grandchildren and that we all were a source of pure joy and healing for her.
How I wish I could talk to my grandma now. She passed away a few weeks later. She never knew about Joaquin's diagnosis. I want to talk to her and tell her about it and hear her say to me again that he is perfect and that nothing is wrong. I miss her. I now know just how close to crossing paths their souls were. The full circle of life....Joaquin coming into this world and Grandma leaving us. They had a moment together and I'm so grateful. Her words stay with me. He is perfect and there is nothing wrong with him.
Jen asked me awhile ago to write about an experience we had in Mexico City this summer when we celebrated my parent's 50th wedding anniversary. It was Joaquin's first visit to Mexico and we introduced him to my whole family. I think Jen would agree with me that every time we go to Mexico there is always the next new "miracle" something...the new miracle cream that will shorten or prevent a cold, the greatest new vitamins, a new meditation technique, etc, etc...
This time around it was this new wonderful therapist/psychic/healer/seer. I don't even know what the official title would be for Alejandra. My sister Adriana told me all about the sister of a friend of hers, Alejandra, who has a special gift and devotes her life to helping people. I am not a skeptic by any means, quite the contrary, I am open to all new things. But I am cautious because I tend to be quite gullible. Since it was difficult to get an appointment to see Alejandra and my sister was happy to give us her own appointment so that we could bring Joaquin, I happily agreed to meet with her. To tell you the truth, I was very curious to see what she would "see" in baby Joaquin.
Jen, Joaquin, Diego and I went to see her and she talked entirely in Spanish. She spoke about so many things and it was hard for me to store all of the information so that I could interpret it for Jen later. It was so difficult to remember every detail. It has been more than 5 months since that day and I've never written down anything she said to us until now. These are a few of the things she said to us.
She said that babies with Down syndrome are new souls, and that they come for a reason. Joaquin has a specific purpose in life, and we should never question any of his actions...if he moves a toy to the right, don't move it back to the left, he has a reason for everything he does. I thought that was very interesting, how specific she was about the idea of what his legacy will be.
As far as his health, she told us that he didn't have any heart defects. This was later confirmed by our cardiologist. She said that she saw some congestion in his ears. This too was confirmed by our audiologist. Joaquin has mild to moderate hearing loss due to what we believe is fluid and he will get tubes implanted in November to help resolve this issue. She didn't see any other physical abnormalities in him. We forgot to ask her about his vision and back then his strabismus was not as prominent.
The most amazing thing she said was that Joaquin's soul was so pure that it was overwhelming to her. She said that usually babies with Down syndrome have huge chakras, bigger than normal, but that they are usually disconnected. She said that Joaquin's were big as expected, but they were connected like in a "typical" baby. His flow of energy was pristine and there was no interruption from his brain all the way down his spine. At the time I thought that sounded cool but now it explains why he is extra special, at least to us. He has such a way of drawing people into him.
My sister Adriana later told me that several days after we met with Alejandra, she (Alejandra) was at a weekend retreat and she couldn't stop thinking about Joaquin. She was very affected by him and felt lucky to have been in the same presence as him, someone with the purest of souls.
I believe that all babies are special and that each child comes to us for a reason. I know that Joaquin is no exception to the rule. He will change lives and he will do great things, at least that is what my heart tells me. I know he has already changed Jen and mine and our families and our friends. His story is also touching people around the world who are reading our blog. Diego and Mateo's childhood is also enriched without limits by having Joaquin in their lives. Sometimes I am still afraid of him growing older, I love him as a baby, but I can't wait to watch him grow and become a toddler and to translate to us all those things he already says in his own language. So much to look forward to and we'll take it one step at a time and savor every moment of it.
Our little baby is a star! Here he is featured on the Parenting.com website. They are featuring pictures of babies and children with Down syndrome all month long in honor of Down Syndrome Awareness Month. Check it out!
Joaquin is scheduled to have ear tubes placed the middle of November. It is an outpatient surgical procedure and he will be under anesthesia for about 20 minutes. None of our boys have ever had surgery, been hospitalized, casted or even stitched until now. It's a quick procedure and fairly simple but to think of my little baby boy in these circumstances breaks my heart. We won't be able to be in the room during the surgery but we will be allowed in immediately after in case he is disoriented. Even though I'm nervous as can be, it is good news and something we were hoping for as a solution for the fluid in his middle ear.
So....we no longer need to proceed with hearing aids. Good news since we learned recently that the little tiny hearing aids cost $2400 and insurance doesn't cover them. We saw the ENT (Ear, Nose and Throat doctor) today and she confirmed that Joaquin's ear canals are big enough for her to place the tiniest of tubes. During the procedure she will make a small incision in his ear drum which will allow her to clear his ears of any existing fluid. Then she will place the tubes which will allow any further fluid build up to drain properly. We are hoping this will eliminate any hearing loss Joaquin may have had since birth.
I will try and forget about the details of the procedure until it gets closer to the time. I function better that way. I know this is the best thing for him and that he'll be just fine. I thank God every day that this might be the only major health problem that Joaquin needs to face. I know we are so very lucky that way.
Joaquin has been "moving" since a few days old on his belly. It started with him in the co-sleeper. We would put him to sleep on his belly at one end of the bed and by the time he would wake up to eat, he would be at the other end of the bed. We've known for awhile now that when he sleeps he is able to propel himself forward. But we've never seen him move forward when he is awake. He was famous for his "superman" flying pose with arms and legs outstretched as if he would be able to magically move to where he wanted to go. Then we started the "inclined floor" or "crawling track" and he was able to push off the sides down the ramp to move himself forward. For a couple weeks now, he has gained some speed and has started to use both sides of his body. Whenever we let him hang out at the bottom of the crawling track, he plays with his toys and moves in circles or backwards...just never forward.
On Monday after we hosted a music class at our house, a friend of mine Liz from the Sacramento Parent's Group was playing with Joaquin at the base of the track and she said she saw him move forward to get to his toys. Later that day, I put him on the track and sure enough when he reached the bottom I put a toy just out of his reach, he consciously and very deliberately placed both hands on the floor and thrust himself forward to grab the toy. It was the most adorable thing and the determination on his face was priceless. YAHOO!!!!
So, we are hoping it's just a matter of time before he is crawling all over the place. And by crawling we mean "army" crawling with his belly still on the floor but moving his arms and legs to get where he wants to go. Crawling and then eventually creeping on hands and knees as he gets stronger.
We celebrated all these milestones with Diego and Mateo and it was always such an exciting process. But it's different with Joaquin. Because we know that these "baby steps" are more difficult for Joaquin, we are just in awe and there is such pure, simple delight in his accomplishments.
We took our first trip to the Pumpkin Patch with Joaquin on Sunday. We met up with some other parents who have children with Down syndrome. It was a great afternoon complete with a petting zoo, haunted barn, tree slides, corn maze and pumpkin patch. All of the boys had a good time. In fact, we made two trips to the haunted barn and we have three pumpkins (one big one, one medium one and one small one) sitting on our porch bench. Our three sons Giving a kiss to the pumpkin Little man
Wow.
So we are getting ready for our second visit to the Institutes in Philadelphia. We leave December 9th and I'm getting together all our documentation, videos and notes to report back to our advocates. I have to admit that it's been hard to keep up with all the things they intended for us to do. Life sometimes gets in the way. 
I was so touched by this article that I have to share it. 
Here is Joaquin right before his surgery last Thursday. In a nutshell, the surgery was a success. The doctor said that she found lots of thick fluid stuck in his ears. She was able to suction it all out and then placed itty bitty ear tubes to help drain any more fluid that might build up. She said that Joaquin might be extra sensitive to the sounds around him and that he would be hearing clearly for the first time in his life. She said we might even need to keep the cotton balls in his ears for awhile to muffle some of the noise around him.
Last night Jen went out with her girlfriends and I was in charge of 3 kids and the daily post. All 3 kids went to bed like usual, no problem. Joaquin did his normal talk routine right before he fell asleep, very cute. So I turned my powerbook on and started thinking about something to write. I was having trouble thinking of something, so I decided to check some of the blogs that Jen follows. I found this post by Jennifer Groneberg from 
I really want to see this movie so I've put in a special request to Netflix to see if they will buy a few copies and make it available to the public.
