Tuesday, June 10, 2008

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.

1 comment:

Trina said...

My daughter was brain injured in 1997 in a car accident. We took her to PA and did the Institutes program on her for almost 3 years. She recovered so much. I both hated that program and loved it at the same time, as it kept me busy for 7 hours of the day every dingle day, and that was so, so hard. But it was well worth it. She is 16 now and fondly remembers her time spent at the Institutes.

I am soooo impressed that you are doing this program on your son. While I was there, I met a little boy who was about 7 or 8 years old who had DS. He was quite the little gymnast, let me tell you. He had been on the program his entire life. I remember thinking, WOW, what a lucky boy that his parents are giving him this chance to reach his potential.

Your family is beautiful :)