Archive for March, 2011

Light It Up Blue! Autism Awareness Day April 2

On April 2, 2011, the world will join together in observation of the Fourth Annual World Autism Awareness Day.  And as “Mommy Blogger” states in her blog called “Diary of a Mom”: “This day exists because it has to.  Because our children’s ranks are now growing in undeniably epidemic proportions.  Because 1 in 110 children are now on the autism spectrum.”  Here’s her link, which will take you to a wonderful letter she wrote the president of the United States on behalf of all of us: http://lightthewhitehouseblue.wordpress.com/2011/03/16/this-is-my-autism/

 

On this day buildings around the world will participate in the campaign to help shine a light on Autism, check http://blog.autismspeaks.org/2011/03/30/2-days-left-until-liub/.  “They will Light-Up-Blue as a statement of solidarity, celebration, understanding, compassion, and hope.  They will Light-Up-Blue to say, “We are here.  We see you.  We hear you.  We support you” (from Diary of a Mom).  On this day I will also change my porch lights to blue, and will explain why to anyone who ask about it.  Will you join us in this awareness effort?   

 

Also during this weekend, help us improved the public school Autism elementary classroom on Juncos, PR.  We will be collecting donations from April 1-3 on the following Subway Restaurants: Juncos Shopping Center, Caguas Hima, Isla Verde, and Montehiedra Total Gas Station.  Visit one of these Subways during the weekend of April 1-3 and make a donation.  The collected funds will help purchase materials and equipment to be used as teaching tools for children with Autism.  A special thanks to the owner Ronald Rivera, for helping us in this effort and allowing us to use his restaurants for this purpose.

“Clothesophobic”

We came naked to this world, and almost immediately our nakedness is covered with blankets and beautiful little clothes.  As babies and even as little children we didn’t care if we have clothes or not, or if other people see us without them.  Of course, our parents and the entire society does a good job teaching us that we have to use them (even which ones we are supposed to use), and as we grow we develop the normal shame of being seen nude.  But what happens when someone past the normal age of developing that, didn’t want to have clothes on? What consequences would this cause in our normal way of life? What would the family and the society expect?  Well, that’s what my wife and I are discovering with our 7 year old son who has Autism.

Suddenly, one day he decided that he doesn’t want to wear anything.  No T-shirt, no pants, no underwear, no nothing.  I thought to myself; “I can’t let him be that way”; so I put him his clothes, and put him his clothes, and again put him his clothes.  For me one of the most important aspects to consider when raising a child is consistency.  I even had to use some unconventional ways in my effort to keep him dressed, like the use of Masking Tape.  Approximately two or two and half years ago, he showed a very similar behavior in terms of clothing, and it was then when I discover another use for the Masking Tape.  I remember that I had to use it around his waist to keep his pants on, around his arms and chest to keep his shirt on, and even around his socks.  Now he has grown stronger and the Tape hasn’t been successful.  Nevertheless I have give it a shot on many occasions, with the unfortunate result of a big fight with him and at the end, he just run to his room and take them off again.

I thought again to myself; “I have to negotiate with him”.  He is not verbal, but we know he understand every word that we say to him.  So I tell him; “if you want this, you have to put this“.  You know, like a reward.  And if we reflect on that for a moment, don’t we all learn with the reward system?  We do things in order to get things.  When we were little we behave the way our parents wanted, to avoid being grounded.  At school we got good grades, to please our parents and get whatever they had offer us if we do so, and also to be able to move from one grade to another like we are supposed to.  As adults, we behave and perform many things to keep a job.  And the list would be endless.

Well, with my son I’ve used toys, bubbles, the trampoline, and even his favorite, the iPad.  The sad thing is that he even prefers to give-up the iPad, than putting just his underwear.  I want to be firm and consistent but then my wife, for whom I’m very thankful, makes me see that he is suffering not being able to use the few things that he likes the most, many of them which are also therapeutic for his condition, so every now and then we let him.

I told myself; “Maybe is just something that he can’t control, and even wanting to or knowing that it will make us feel happy, he just can’t”.  Then we went to the doctors and specialist, in our quest of finding a cause for his setback.  After many visits and some laboratory analysis, it all seems to be a combination of things.  I’m not going to go into the details, but after resolving some medical conditions, what remained were his sensory disorder, for which a special sensory-diet was developed and is being performed, and also a very interesting coincidence (“or isn’t?”).  During both times when he has shown this behavior (now and the similar behavior shown approximately two years ago, as mentioned earlier), there had been a death in the family.  First was my mother-in-law and now it was my father-in-law.  As anyone could expect, my wife is going through a very difficult grieving process due to this two losses and in such short period of time.  Could my son be expressing in some way his feelings?  Could he perceive my wife’s sorrow and be reacting with this behavior?  I do remember reading about how a child with Autism, could have a feeling about something but without knowing how to express it, he could just do unrelated things that helps him expressing how he feel.  The book tells the story of this boy who receive a gift from his grandfather.  It was a brand new bicycle.  Immediately after seeing it, the boy runs to a nearby water fountain and starts jumping and smiling.  To many it could seem that the boy didn’t like the bicycle or have no interest in it, but experts teach us a different view of the boy’s actions.  He did like the bike and is happy for it, he just don’t know how to process the sight information he is receiving when he sees the bike, and then integrate it with his emotions in order to send the signals to the muscles on his body and actually move his face or body to perform a smile or start jumping.  Instead, he ran to a familiar object or stimulus with which he knew how to do it.  So he ran to the fountain to express his happiness and joy for his gift.  Can this be applied to my son’s current behavior?  Is he behaving this way to communicate something? I really don’t know what, but he is definitively expressing something.                 

So far once he is dressed up, he remains wearing clothes as long as we are out of our house.  That’s a big success, but our challenges with this situation are far from over, not to mention the struggles we go through when we are actually going out of the house.  First he doesn’t want to get out of the house, so we have to show him something new but without giving it to him yet (usually related to the movie “Cars”), then when he’s at the door of the car we give it to him, began the dressing routine, and hope for the best.   There have been moments when we had to let him be totally naked all the way to the school, if we want him to go to school at all.  Then at the parking lot, he usually let us dress him up.  I say “usually” because there has been times when support from teachers and administration personnel had been necessary to fully dress him and take him out of the car.  I don’t understand why, but while at home he refuses to remain dressed for some reason, like with the shoes in the car.  For him is something automatic; before he can be properly seated on the car seat, he has to remove his shoes and socks.  We’ve try to let him know that is ok to have them on, but after fighting for a while we’ve decided that is better for him, and as a matter of fact for all of us, to be calm and secure in his car-seat than with his shoes on.

If you think this is struggle enough, what if I told you that at his age and with his clothing issue, he isn’t potty trained yet?  You are right, that complicate things a little bit, or should I say a lot?  Every time we go out with him we have to carry an ESK (Emergency Spill Kit), just in case.  And if you wonder if we had used, sure we have.  The other day while waiting a doctor’ office, the emergency happened.  Even though the inappropriate situation, I’m proud to say that my wife and I really worked as a team.  We switch instantaneously to an ERT (Emergency Response Team) or something, she focusing on our son, while I focused on the spill containment and waste disposal.  The other parents had phases of amazement on our preparedness and quick response on an event like that.  In our house however, the story related to this part of our daily struggle is a little bit different.  Since there are no clothes and no dipper, there is no containment here.  Also the effects would not be just on plastic chairs and on the floor, like many public places, but everywhere from the bed, sofa, couch, walls, toys, etc.  These last couple of nights had been awful.  I can’t find the words to describe the scene, and maybe it’s better that way, but I think messy and disgusting will give you an idea.  Sometimes I try to ease my stress saying to myself; “Hey, at least he is not with a terminal disease or something“, which makes me realize that the situation could be much worse.  Nevertheless, this is really affecting me and my wife, both physically and mentally.

And you know, thinking about it makes me realize that from a couple of years ago, he really had never use clothes while in our house.  He used to have only his dipper.  The difference is that now we have removed them from the equation.  We were so eager to potty-train him, that we really make sure he understood that he was not going to use diapers anymore, or so it seems.  And if you know a little about Autism, you know that once something is established, the person with autism will not rest until it is kept that way.  So maybe he hasn’t change at all, but it was us who changed his routine and are now dealing with the result of our actions.  Maybe he wasn’t ready to learn how to use the toilet but we blindly taught him not to use his dipper.  This is just me thinking, trying to understand my current situation, and remembering that not so long ago we wanted to get rid of the diapers and now I see myself praying that he keeps it on, at least for a while.

Potty Puzzle

Those who are parent will agree that potty training is not an easy task, so imagine the added challenge when you are teaching this to a child with Autism.  The other day I started (once again), potty training with my middle son, who is now 6 years old.  My plan was to focus first on staying seated, and then emphasize more on the actual peeing.

The first time was very difficult because he didn’t want to enter the bathroom.  So much time has passed since our last attempt that I think he had just forgotten about the whole routine.  I had to carry him all the way to the toilet.  Finally I got him inside the bathroom but then he didn’t want to sit on the toilet.  I have to use one of my self-developed body restrain techniques to be able to keep him seated.  When you have a child with Autism, you have to learn untraditional ways to hold, carry, and restrain him, for two main reasons: to avoid hurting him and to avoid getting hurt yourself.

I remember one day while waiting in a doctor’s office, there was this kid making it difficult for his mother. He was behaving so badly, that his mother toke him outside the office and for some reason into the bathroom.  Understanding her situation, my wife went to her and found her all bitten and crying desperately.  She offered her my help, to which I agreed when the situation was explained to me.  When I got to the bathroom, I found the boy on the floor and the mother crying and unable to calm or just take him out.  I then introduce myself to the women and began the task of grabbing the boy with my (once again), self-developed body restrain techniques.  I did receive a slap in my face at the beginning of the process, but I manage to hold him in a secure way for both of us and take him all the way to their car in the parking lot.  When it was all over, the women ask me “thanks, where did you learn to do that”, to which I replied, “a lot of practice with my own son, don’t worry”.

It is true; nobody teaches you how to deal everyday tasks with a Son with Autism. You have to live them in order to open you mind to the learning process.  For example; how difficult could it be to get a haircut, after all you just have to sit there and let another one do the working.  Well, don’t underestimate the task no matter how ordinary or simple it may seem.  Let’s analyze it for a moment from an Autistic perspective.  First I have to go to an unfamiliar place, to sit with a bunch of strangers and wait until I’m called.  Then when they finally call me, I have to sit on a chair that moves freely to the sides and make me feel unstable.  I can be very sensitive when it comes to stand or sit in a steady place.  In my case I’m fortunate that my father sits on the chair and I sit on his lap so I can feel more secure.  Then a stranger approaches to me with scissors, which I know can cut me, or with some kind of machine that produces an annoying vibrating sound.  If that isn’t enough, the stranger start cutting my hair, which in case you don’t know, I can be so hypersensitive that even cutting my hair can hurt me.  Can you imagine that? They can even feel when their hair is being cut? Even for me, his dad, it is still difficult to understand.  So as I said before, you have to live these moments to learn about the everyday task with an Autistic Son.

Back to the potty training, I got to the most difficult part.  He is in the bathroom, seated in the toilet but, how do I make him pee in the toilet? Well, I don’t know the answer to that yet, but I do know what I’ve tried so far.  The routine of every 30 minutes, waiting until he just can hold it any more, modeling myself; I think I’ve tried them all.  With little success so far, but I have faith in him and his ability to learn.  He has shown that, many times and I know it’s just a matter of time before he masters this new task that’s been given to him.



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