Thursday, December 18, 2008

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.

5 comments:

Cleo said...

Beautiful photos!!!. Thank you very much, Jennifer and Hector for sharing this interesting post. I can feel your best intentions and appreciate your kindness. I’m happy Joaquin is making so much progress, the programs you are using with him are so encouraging, stimulating and constructive. I trust with all my heart that loving our children unconditionally, accepting and respecting their journeys and providing them with all the help and support so they can reach their fullest potential is the best gift we can ever give them :). Very Best ~

Holly said...

Joaquin is so adorable! I'm glad you had a good experience this trip and congrats on being accepted to the program.

Merry Christmas & Happy New Year!

Nadja said...

I am very glad to hear about your story and how
Joaquin is developing because we also thinking
about starting the program with our son Vincent (20 Mth.) with DS.

Unfortunately there is such a lack of information for
this program but from the homepage.

As we have learned there is also another institute the
family hope center who carry out the program.

We would appreciate it very much to receive more
information to help us to decide which institue we
should choose.

Can you help us. Have you heard about the family hope center. Is the program equal, the same?

As you wrote we are a family who also wants he son`s life to be independent and we are convinct that there so much more potential than most of the people can think of.

Looking for forward to hear from you soon. (martin.nadja@t-online.de). All the best for your family and Joaquin.

Ronette said...

Your blog is so inspiring. My son is 3 months old and was diagnosed with Monosomy 1p36 @ 3 weeks. We were devastated but now I am trying to see what can be done for him. The Institutes is the only comprehensive cognitive program I have found. Does the intinsive program require that one of the parents not work? I have heard the time committment is 10 hours a day.

Hector and Jennifer Varanini Sanchez said...

Ronette-
It's a wonderful program at the Institutes and the staff is amazing. Every child's program is individual and it definitely helps if at least one parent is home with the child but I do know that some families bring their nannies or their extended family to help with the program. We've never been told a certain number of hours to do the program but certainly the baby should be stimulated and given opportunities for development every waking moment....which is usually the case anyway with a baby who demands attention. I encourage you to at least attend the week long workshop. It's is amazing and then you can always create your own treatment program based on what you learn and how it would best fit in your lifestyle. Good luck to you!!!