Baby's First Christmas

Merry Christmas Eve. May all your hearts be warmed by your family and friends at this beautiful time of year. Our hearts are full of love this year.

Results

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%.

2. Developmentally: Height=good. Chest=excellent. Head=good.

3. Practically: Mom is good. Dad is good.

4. Clinically: The staff feel his improvement is excellent.

5. Goals: 1. Physiological = Good, 2. Intellectual = Good, 3. Physical = Good.

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.

A Breath of Fresh Air

Wow.

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.

Patience

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

Not So Sure About Santa

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!"

An AMAZING Teen

I was so touched by this article that I have to share it.

This athlete never fails to amaze his teammates, fans

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.

Hearing Update: A New Baby

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.


Recovering from surgery.