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Communication Beginning 

I’ve been reading recently the book “Ido in Autismland” by Ido Kedar, which by the way I strongly recommend, and I’ve learned a lot about how it is to be a non-verbal child on the Autism Spectrum from the perspective of the child. Sometime while reading, I felt like if it was my Son Diego talking to me about his struggles and about how he feels, because what Ido explain is so similar to what I see in my Son, and the situations we go through. I will discuss in the future more about Ido’s book, but in this instance I want to concentrate on an action triggered on me directly because of reading the book.

I had recently restarted practicing math at home with Diego using a selection process with his iPad (like they do at school). We have had some success, but while reading Ido book he explained how frustrating it was for him to practice using the ABA method and the selection of flash cards in response to a question for example. He explained how there’s a hand-brain disconnect, how even if his brain is telling him to touch the correct answer due to this disconnect his fine motor skills are severely affected and may choose the wrong answer. He expressed how Rapid prompting Method created by SOMA from the HALO non-profit organization have been a blessing and how this method have helped him to actually communicate. While reading this, I realized that what I’ve been doing with Diego was similar to what Ido explained that didn’t worked for him. So I told myself that if RPM was the way my Son can communicate, I definitively have to put an effort to learn it ASAP. 

I coordinate to be present for the next visit of his RPM practitioner Adriana (who by the way works amazingly with Diego), to my home so I can start the learning process immediately. She explained how I should approach him, how should I present the letter board, that I have to write and show or draw illustrations as I’m giving the lesson instead of just reading, etc, etc. So the day came and I started the lesson that I had prepared the day before, which was about one of my passions; Firearms.

I started explaining where the firearms were invented, what types of firearms there are, revolvers and semi-automatics, that we don’t need to be scare of firearms, but instead we need to understand and respect them, and asking him some questions along the way. The second day I continued with the same topic and basically I had to help him with different prompts in order for him to spell the answer to my questions correctly. Then on the third day we started with the history of my other passion; Motorcycles. I explained him were they were first invented, and how the first ones had a steam boiler as their engine, and then explained that steam was water in the gas phase, which is formed when water boils at 100˚C (As a coincidence, one of the topics he discussed with his therapist during his last lesson was the different stages of matter). Then I asked him what happens to water when it is heated to 100˚C and what happened next struck me. Slowly with his finger he spelled “BOIL” on the letter board. I almost stop the lesson but forced myself to continue. Then I asked him how do we call water when it is in a gas phase and he slowly again spelled “STEAM”. Ok; my eyes almost tear up then, and are about to again as I write and reconstruct the scene in my mind. He actually spelled words to me, and I’m amazed that this is just the third day that I’m practicing RPM with him. I have seen him spelling to his RPM practitioner and with my wife but I felt something different when it was directly to me.  

I think many parents take their kids for granted. Many parents take all their children’s accomplishment throughout their individual development for granted. It could be a sport they are practicing, a good grade they’ve got on their latest school test, an idea they may have, or just their latest discovery on their newest videogame. With our busy lives, working long hours or even from home, sometime we are just tired and want a break from everything. I can’t put in words how much I would like to hear the voice of my Son, and then I see other parents yelling to their children to shutoff. During our personal journey with Autism in our home, we have come to realize the importance of the little things and to appreciate every apparent small achievement of our children. Today I celebrate the two words my Son Diego spelled to me, and I pray to God for this to be the beginning of a strong father-and-son communication.

Am I at ease with Autism?

I’m sure a lot of people out there are in the same situation as we are, and have tried many things, methods, and therapies to treat Autism in a child or a family member.  Autism Integral Intervention Model, Diets, Metabolic Studies, Allergies and Genetic Studies, Applied Behavior Analysis (ABA), Picture Exchange Communication System (PECS), the Hyperbaric Chamber, Vitamin Supplements, Auditory Integration Training, Rapid Prompting Method (RPM), Dolphin Assisted Therapy, etc., you name it. And when researching one particular treatment, we are only told about the one or maybe two cases that showed significant benefit, but we never hear about the other much bigger group that tried it but little or no improvement was observed, or even worse, that a regression occurred after the treatment. The sad situation we face is that a therapy or treatment is not a straight forward process, in which you do something and see the results, but instead a long process of therapy after therapy, and evaluation after evaluation, with any potential results not expected in the near future.  Also a treatment that worked on one person isn’t necessarily going to work on another, so no one can assure that it will work on your particular child or family member.

Then there is the financial aspect of taking these treatments.  It is true that you can’t put a monetary value to health, especially if you are referring to your own child, but let’s face it, none of the treatments are cheap and the majority of the methods or therapies are not covered by any health insurance because they are considered as “experimental treatment“.  According to Autism Action Partnership, the lifetime cost to support an individual with autism is greater than $3.2 million.

Eventually you make a decision of the treatment or a combination of treatments you want to pursue based on the information and resources you have.  In our case our son has been taking Speech and Occupational Therapy since he was 2, plus Psychological Therapy. We’ve tried the Autism Integral Intervention Model, Diets, Metabolic Studies and Treatment, Allergies and Genetic Studies and monitoring, ABA, PECS, Vitamin Supplements, the Auditory Integration Training, the RPM, and I’m sure I’m missing a couple more.  I have to say that some of them didn’t seem to cause any improvement at all, while others, in combination and added to his chronological development, seem to have help him significantly.  Our son is able to dress himself, he’s potty trained, he eat by himself, he can write his name and some other words like “ELMO”, he can draw, he plays pretend, uses his toys with meaning, he is an expert in the use of his iPad, and he can communicate through pictures and through spelling.  Some of this may seem simple tasks or everyday activities we take for granted on typical children, but when you have a child with Autism you learn to appreciate and understand the true value of the small things in life.  Following one of his drawings and a letter he spelled to his therapist, to give me on my birthday.

I am happy it is your birthday.  I am damn excited and happy I am already making a message. U R so awesome.  Glad I am your son. You are raising an intelligent man. Nice job. You have nice children. I have magical intelligent dad. I love you.

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I can’t be prouder and happier, and more thankful to God for all the accomplishments of my son.  But sometimes I wonder, have I’ve done enough?  When do you stop researching for new approaches to Autism?  Am I still providing the best possible environment and learning tools for him to continue reaching his full potential?  Am I too comfortable with the therapies and medical care we are providing him?  Am I at ease with Autism?

I believe we have to accept that Autism is part of our life and probably will be for the rest of it.  If we don’t accept it, we will not have the proper mental state in order to deal with Autism.  But we need to be careful not to become too pleased and comfortable with the “status-quo”. We need to do more.  I need to do more.  I want to help him more. I want him to be able to express more his feelings and his emotions.  I want him to be more independent with his personal care.  It hasn’t been easy, and I know it will not become any easier now that he is becoming a teenager.  But I want nothing but the best for him.  I want him to be happy.

Autism Awareness Day – April 2, 2014

April 2nd is Autism Awareness day. But why do we need awareness? Because 1 in every 68 US children has an autism spectrum disorder (ASD), as per the latest statistics released by the Center for Disease Control and Prevention. That is a 33% rate increase from the previous released numbers, and as shown on the graph below, it seems that it will only get higher and higher.

Autism Rate IncreaseOur son Diego is a 9 year old boy with moderate to severe autism, sensory integration disorder, and is non-verbal. But he is not “autistic”; he is kind, sweet, loving, a great brother and an amazing son, who happens to have an autism disorder.

He started spelling messages a few months ago, thanks to the RPM method (Soma/Halo) and his excellent RPM therapist. He’s favorite words are Nice and Happy, because that’s what he is, a happy and nice boy who touches the lives of everyone he connects with. We have also started practicing letters, words, and picture association with the computer keyboard, and he is doing great. We are truly blessed to have him, since he has helped us understand what truly matters in life.

In honor of World Autism Awareness day, we share his poem which he spelled a few days ago:

Title: My Magic Family

“Happy I am Diego

Happy I call my great family magic

Happy happy happy

Happy my Mom can hear me now

Happy my Dad adores me

Happy Sofia laughs with me

Happy great family plays with me

Magic family loves me

Happy happy happy

Happy I get magic family”

 

Words to Voice Thoughts

“Words to voice thoughts”. This was the first thing my Son spelled when asked about what he was thankful for.

He has been practicing the Rapid Prompting Method (RPM) for a while at home with a therapist, were he is taught how to spell on a letter board. Usually after discussing and spelling the answers to questions related to the day’s topic, his therapist asked him more personal questions like how he feels, what he likes, or what topic he wants to discuss the next time. During this week she asked him about what he was thankful for and he spelled the following: “words to voice thoughts”, “padres” (spanish word for parents), and “mi swing”.

For us this has been a real breakthrough. He has been communicating using PECS (Picture Exchange Communication System), for some time (and still does), but now he is communicating with words, and communicating his needs. Last week he spelled “tooth hurt”, and when asked if he needed to visit the dentist he spelled “yes”. I have to admit that I was a little skeptical but mom made the calls and the next day we were at the dentist office. He was really communicating his needs!, an old filling had come out and was hurting him. This took my doubts away. He really is spelling!

We still have a long way to go but it is really amazing that he is finding a way to let us know more about him. He had spelled “I luv my pretty mom”, “to Sofia” his sister, “I luv you”, and also stuff he want to know more about like hippopotamus, cactus, monkeys, and even extraterrestrial life . He is also letting us know what he wants like a bird feeder. And it seems that he has a lot to say since one day he spelled: “I beg Dios” (spanish word for God), “I need to be herd”. Then when asked if this was correct, if this was what he was trying to say he spelled “si” (spanish word for yes). Then asked if he was done and he spelled “no”, “I got so so more than I imagined”.

We recently relocate to the US looking for better programs to help our Son and for a better education for our kids. It has been nine years of his silence. Trying to understand him based only on his actions and the PECS System. Now after only eight months of living here and thanks to his RPM trained at home therapist, he is spelling how he feels, subjects that he is interested with, and also if he is hurt. He is spelling that he wants to be heard and that he has a lot to say. Well you know what Diego, I can’t be more proud of you and I’m eager to read every single word you have to spell. Keep spelling and I will keep reading. Your Dad.

For more information about the RPM method for spelling, visit: http://www.halo-soma.org

Safety Struggle

Some sort of collision or accident in front of us while driving back home on the highway. My immediate reaction was to press the brake pedal as hard as I could, but it was too late and our car hit hard. As a result of the impact, my son was ejected from the backseat and hit the front glass. He was sitting on top of the backseat armrest located in the middle, and he had no seatbelt. Then my mind came back into reality. No accident had happened. It was just a possible scenario produced by my imagination. It’s amazing how much information out of brain can process in a split of a second.

We were indeed driving back home and my son was sitting in the backseat armrest with no seatbelt on, but he was fine. Nevertheless, the feeling that something bad could happen to him continued, as well as a whisper in my ear telling me that I should stop immediately and do something about it or I would regret it.

It has been a couple of weeks, or perhaps months, since Diego started to struggle with the seatbelt. Sometimes we had made an attempt to get him secured again, with little success, and sometimes we have let him be as he wants. We try to “Pick-Our-Battles”. But this time I feel different, and couldn’t ignore anymore the fact that he was not secured. If I had known at that moment the series of events that will follow, maybe I would have thought twice before stopping the car.

We were 15 to 20 minutes from home when I stopped at the side of the road. I don’t remember how long it took us, but getting there was a never-ending nightmare. At first it was the same struggle I’m used to, between what he wants and what I believe he should do. I began by telling him why he should have his seatbelt, but he started to complain and refused to follow my instructions. I thought that as on many occasions before, if I prove to be consistent he will do as he’s told. This time he became angrier and angrier with every passing second. He’s OCD kicked in, and he began opening every single drawer or compartment in the car. He got on the floor between the front and the back seat, and later on the front seat leg room space. I tried to get him back on his seat, but with every attempt he got more irritated. The tension and anxiety was high on all of us, but my wife was able to contain it all and was the one trying to calm everybody. He embraced her and hold on to her stronger and stronger. At one point we thought he was going to stay calm in the front seat but when my wife started driving, he jumped into her arms and she almost lose control of the car. Eventually I got him into the back seat were my wife held him as tight as she could, while he was kicking and screaming.

It was painful physically and mentally, and we were all stress out. Unfortunately our daughter witnessed all of it, and after a while she started crying. I think sometimes it must have been difficult for her to comprehend what’s happening with his big brother. We always explain to her what he is going through, and she seems to understand in a surprisingly mature way.

Ultimately we got home safe, but drained and exhausted. That night we may have continued with our lives as usual, but the psychological scar will remain with us for a long time. I will never know for sure if I should have ignored the voice in my mind or if I did what I had to do. I like to believe that there was a purpose for all to happen, and that our journey back home had to be delayed by any means. Anyway, I have to find a way for him and for all of us to be secured while being on the car.

Happy 8th Birthday to my son

A special note from my wife to our now 8 years old son:

“Happy birthday to my big kid, my sweet and loving boy.  You were blessed  with a pure heart, mind and soul.  Thanks to you,  I am a stronger and better human being. Diego, you are my inspiration and my strengh and I’m  so proud to be your Mom.  In fact, many hearts have been touched by you, and you have tought many of us who surround you lessons about what really matters in life.

Even though you are extra sensitive to “everything”, at the same time you are stronger than any kid your age. Thanks to you I now know what unconditional love is, and for that I’m grateful.
Today we celebrate all your big accomplishments in this past year, and we look ahead to help you reach many many more! We all love you so much DIEGO, have a happy 8th birthday my son.”

Daisy

 

And what a nice surprise it was for us, when he blew the candle all by himself.  And he liked so much, that we had to light the candle over and over for a little while.

Autism Awareness April 2012

Last April 2011, my wife and I helped the Autism Classroom of the Roberto Silva Morales Elementary School in Juncos PR, with materials and sensory equipment purchased with all the donations we gather from the customers of several Subway stores. This year, again in harmony with the International Autism Awareness Month, my wife and I decided to help this classroom once more, and we worked together to get a donation from Amgen (the company I work for). With the donation, one of the things the school bought was one of those big wooden gym sets with swings, sandbox, slide, monkey bar, etc. My wife thought that maybe I could help setting the wooden gym, to which I immediately accept when she told me, but then I thought it would be even better if I could gather a group of people with whom I work every day in the project LRPM 2011. I didn’t know what to expect, but when I started mentioning the idea to the team their response was of total support.

We setup the date and we went there on the afternoon of 04-03-12 with tools and eager to help. Before we started the construction, I introduce the team to the teacher (Ms. Doris Camacho), who was impressed with how many people had taken from their own time to do this (special thanks to Mayra, William, Steven, Omar, Erik, Javier R., Javier C., and Rafael). Even though we were a team of 9 people, the equipment had so many screws and different parts that it took us some long hours to put it all together. Nevertheless, the enthusiasm and teamwork remained evident, not only for the satisfaction of what and for who we were doing that, but because we were taken good care of with food, water, and even fresh lemonade. The mastermind of that was my wife Daisy, who also got a donation from Subway Juncos (they always answer yes when you ask them), of an exquisite platter of sandwiches along with a box of their delicious cookies for Amgen’s volunteer employees. Thanks Daisy, Amy, and Ronald.

During construction, I received a wonderful surprise with the visit of my son Diego and my daughter Sofia. Diego immediately began to inspect our progress and wanted to climb the ladder. At the end, already night-time, we were pleased of what we had done but there was still something missing. We had to actually see the kids enjoying the wooden gym in order for the experience to be complete. So the next day I talk to the teacher and we went there during our lunchtime. There we had the opportunity to watch them play with it, laugh and had a great time. Even one of them give us thanks for it.

For me, and I know for the rest of the team, it was an amazing experience were we had the opportunity to help these wonderful kids, this excellent classroom and teacher, and in addition to all that, it open the channel for conversation about Autism and all its different variables. This is what awareness truly means.

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