Archive for the 'Latest Post' Category

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.

This slideshow requires JavaScript.

Miracle at Cartoon Cuts

My wife said it right. When I sent her a short video of our son calmly taking a haircut she said: “it’s a miracle”, and she was right; it truly was. He sat by himself and let the hair stylist cut his hair while he watches Cars 2. He moved and complained every now and then just like any kid, but overall it was great. I was stunned for a moment and then excitement took control of me, and I began taking pictures and congratulating my son on how well he was doing.

Since this is a place just for kids, they have a TV in front of every booth so they are entertained. Yes, this is great. And if you are wondering why we didn’t bring him to this place before; we have but with the same struggle as in other places. We tried everything. Paying for in-home haircut service, we tried doing it ourselves, we took him a couple of times to Cartoon Cuts when he was little, and we also took him to the place where I usually go to get my haircut, which worked for only some time. There was always a struggle and some sort of fight between him and me, and with the stylists who were just trying to do their jobs. There were screaming, pushing, kicking, and chair spinning, but somehow I always managed to complete the task. I try to avoid it as much as I can because the whole event is painful for me too. Every time I get out of there exhausted physically and mentally. As a father I don’t want my children to suffer, and seen him in fear or perhaps pain breaks my heart but sometimes there is really no other choice.

The last time I took him to the place that I usually go it was so terrible, that even the employees told me that perhaps I should bring him another time, maybe on another moment when he would be more willing to let it happen. I was so frustrated for not being able to control him, even though we had done it many time before. We (me and my son) had succeeded against all fear on every occasion, but this time Autism was stronger than both of us. The experience was so bad that I deiced to never go back to that place again. At this time we tried again to perform it at home with no success. I even tried to do it while he was sleeping, but it didn’t worked well either because after a couple of minutes he woke up with just a portion of the work completed. One day my wife told me that she wanted both of us to take him to Cartoons Cuts to see how it goes. She got to sat him in her lap and there was some resistance, but overall it wasn’t as bad as I expected. This gave me some confident for next time, so I took him by myself and you already know the end of the story.

For parents of typical children, these are everyday simple tasks. For parents with a child with special needs, Autism with sensory disorder in our case, going to a Doctor appointment, to a store just to buy groceries, even holiday events and family gatherings are stressful and need a lot of planning ahead. And no matter how much I could try to explain or describe it, you have to live it to really understand the implications.

As time goes by and he grows older I’m seen him mastering activities and accomplishing many new things, which reminds me of his potential and gives me more strength to continue exposing him to all type of environments and help him manage new challenges. I have to give credit to Carol, the stylist that patiently and wisely took care of my son’s haircut. I will definitely return to Cartoon Cuts and ask specifically for her services next time my son needs a haircut. This is a huge step forward, and we are very proud. Great job Diego!

Hungry for Noodles

One thing I worry about Diego’s future is his independence.  How he is going to take care of himself, when currently almost everything has to be done for him?  And I’m talking about the basics things we have to do every day; like brush our teeth, get a bath, go to the bathroom, get dressed, or eat by ourselves.  For me when the time is right, every typical child learns these things easily with some instructions and basically by the modeling of others; at least it has been that way with his brother and sister.  In Diego’s case the story is different; he doesn’t learn how to do them as easily, and sometimes it seems that he doesn’t want to be taught how to.

Taking a bath, for example, is something I’ve started teaching him.  I explain to him what we are doing while manipulating his hands on how to do it.  There has been some progress, and now I can even have the water faucet open for a short time while he is inside the bathtub (he usually doesn’t like the sound that the faucet does when the water is flowing), but unfortunately little overall success.  The brushing of his teeth is something I’m also working on, and I can say he is getting the idea.  He identifies his tooth-brush and the tooth paste, and let me manipulate his hand without complaining.  His not there yet because when asked to brush them by himself, he does place the toothbrush in his mouth but just to chew it.  In the eating department is where I can say he have shown the most progress.  But this story started a couple of months ago, when he used to eat just rise & beans or french-fries.

One day my wife was eating noodles and he showed interest in tasting them.  She agreed, and the most amazing thing happened; he liked them!  And he liked them so much, that from that moment he only wants to eat noodles.  For breakfast, for lunch, for dinner, and anytime in between, it just noodles what he wants.  But let me clarify that it’s not any type of noodle.  It has to be Japanese-Style Stir Fried Noodles with Savory Sauce, whatever that means.  Thank God they come fully cooked, 3 minutes in the microwave and you are ready.  The thing was that every time he was going to eat, he was so excited while I prepare them that I figured that I can negotiate the eating-by-himself learning process; and so I did. I told him: “if you want them, you have to hold the fork yourself”, and he allowed me to manipulate his hand.  I had tried this many times before with the rise & beans but with no success, since every time he refused to learn how to grab the spoon and take the food to his mouth.  With the noodles it has been different.  After many weeks of practice I can proudly say that he is now eating the noodles basically alone.  Isn’t that amazing!  I even took a video to show other how well he is doing.  Now he patiently waits seated while I prepare his favorite noodles, then he eats them all by himself.  

For a father it is a wonderful feeling when your children get to master something.  But I got to admit that with a typical child you kind of expect that they will get it sooner or later.  With a child with Autism you know they have the potential but sometimes you are not sure if they are going to learn some specific tasks or not, so when it happens it brings you tears of joy and an enormous amount of hope for the future.  Great work Diego!



Follow

Get every new post delivered to your Inbox.