Life is Precious

The biggest threat that I am trying to face right now, is the reality of their short lifespan. Yesterday, my brother had his blood chemistry taken finding out that his cholesterol (SGPT) is eve higher than a healthy adult's. I felt so scared that I didn't know what to do about it. i wanted to shut everything out as much as possible.

I cannot imagine life without my brother. And what about my parents? They have never spent enough time with him. Enough time to get to know him. It scare me to death that he may not live long enough for me and my family to enjoy time together as a complete whole.

Simply Treasuring the Jewels Within

Sometimes we just have to sit back and see how beautiful these children are. Sure, there are times when they can be destructive but its not as if they mean it. We, being the normal people should understand and see what they are going through. Being able to see how beautiful and loving these children are take time, effort and patience. Believe after having exhausted everything, you will be able to see the jewels that they are.

I saw how violent my baby brother could be when he is provoked, hurt or frustrated but there are the good days where he wakes up happy and cheerful. Dancing to the music and smiling from ear to ear. And those are the days where I can say how lucky I am to have such gems. There are those times when he sneaks up on me in bed and cuddles and just wants to be treated like a baby. How I wish my mom would have been here to feel the warmth of this little boy's love.

Learning and Teaching

The past couple of days have been a blur to me. In the short span of time since I started this course I felt more involved with the kids and in a way my dad has been cooperative enough to reach out and spend time with them.
There have been instances already when I am able to take my brothers out for a ride without having to bring a helper with me. Just last week me, my dad and my two brothers went to the boulevard to eat burgers.
In that short span of time, I noticed how great it feels to be so involved in caring for my brothers. Seeing them so happy brings warmth to my heart and that, my friends is something you cannot trade in for any gold in the world.
But my problem is that everytime I start to get that good feeling of emotional attachment to my brothers, I start to get bothered because I end up thinking about how things will be once I start my career.
Just this morning my dad started to mention (again) that when we move to the states, the kids will be placed in a dormitory (an institution) so that me and my mom will be able to work. That got my blood boiling again! I would never allow my brothers to be put in such place! I would rather keep them here in the Philippines with their yayas, where they are comfortable rather than take them with me to the States only to deposit them in some institution.
How am I ever going to be able to take care of my brothers with the future that I will be facing? The sad part there is that I can never share my worries with my mother. I hate that she dismisses my fears. I don't know what to do anymore...

Autism Day on CNN

As I was browsing through the channels I found out that it was World Autism Day. The story on the screen was of a 19 year old American boy. He was tall, and had just learned to do self care. I saw my brother in him and once again felt sad. I could not imagine living life unable to care for myself.

I look at my brothers now and I see in them happy children just enjoying what they have. But they will not be children for long, Ryan is now 19 and Robert is now 10. How will they survive without me or my parents? Who will take care of them and provide them their needs. I would want to believe that they would live happy lives but it all seems so hard to picture out.

I enjoy spending time with my brothers because they seem to take away all my troubles but time will come where I will have to go on my way and make a living. How will my brothers survive without me?

A Smile...

My favorite thing to do when I'm with my brothers is just to watch them. Looking at them at play just makes my heart melt like butter. Just to see them happy takes away all the doubts that I have. They make me strong and they make me want to fight for them. I can't imagine how my life would have been if they were not around. It would have been a dull and empty.

I admit that I am always in fear of what is to come for me and my brothers because having parents who work in two different places and rarely seeing eachother is like preparing to witness a battle. But sometimes I just want to be able to sit around and play with them just like everything in the world will be okay for us. Time has not been gentle on me and I feel as though I have aged ten times my real age but seeing my brothers happy just takes the fears away.

Changes...

Its so frustrating how things can be so different with them everyday. Just last Sunday, he was this sweet little angel who let me give him a bath and take him with me to church. Today he is this unruly, spoiled brat who peed on the sofa and won't take a bath and get ready for school.

It only goes to show that things are unpredictable and difficult in handling a special child. A lot of things will change in just a matter of moments. Bitoy already weighs as much as me as of this time, how much more in the years to come?

I'm afraid that I may not be patient enough to handle that. And what about Ryan? What more piece of patience can I spare for him? He's already in his late teenage years and what if his sexuality starts to kick in?

How much help can I be at that point? I'm so frightened that my parents will abandon their responsibility towards my brothers because otherwise our future will be compromised. I cannot take care of them and work at the same time and I don't want to be forced to take them to an institution. That's the worst case scenario!

My Fears

Everyday seems like torture to me. Being unemployed and stay home sister is not doing well for me. I don't know why it seems so hard for me to take a stand towards the taking care of my brothers, hands on. I do in my own way, that is taking them out for a ride in the afternoons and buying them food but getting them ready to school and taking them to school is so hard for me to do.

My brothers don't listen to me anymore and I'm starting to fear that I may not have any control over them at all. What I'm afraid of is what will happen when our helpers will leave or when we will migrate? What will happen to our family and what will happen to my own personal life?

I seem to sound selfish most of the time and I admit that I may be selfish. But I can't seem to get past the fact that I have a lot of things planned for my life and that I am not yet ready to take over their care. When will I be ready? I don't know.

Everyday my brothers are getting older and everyday there seems to be a gap between us that I have a hard time getting close. I want to be able to spend time with them but I can't do that on my own. Physically I can't handle them and emotionally I'm not strong enough either. I'm afraid that one day I will not be able to control them and I won't be able to find people who can control them.

I just wonder how my parents feel. Are they thinking of the same things as I am? Are they also trying to break free to live their own lives? If they are, what about me? What about my brothers? Am I their sacrificial lamb?

Feedback From The Proessionals

Last Friday we had a meeting with my brother's teacher, or the one in charge of their schedule in general. She informed us (me and Gina), about Robert's improvements. Basically she was more focused on informing Gina, since she was always looking at Gina while she was speaking. It seemed to offend me especially since I am the child's sister. But going back to her evaluations It seemed that Robert's attention span was indeed increasing and now he could comprehend orders in two sentences, which is a good thing and which I have noticed.

The thing is Robert is a very manipulative child and is very wise in getting out of trouble. He has a way of charming his teachers to getting what he wants. Which is true. Everytime Robert does something bad and I reprimand him, he seems to find a way to charm me into not being mad at me anymore. He hugs me, he dances for me, he even kisses me to make me feel better. It seems to break my heart to be mad at him but at the back of my mind I know that giving him the satisfaction of getting things done his way is not good for him, and that's where I'm torn. I know spoiling him will not help him at all but it hurts having to scold him.

Another thing his teacher told me is that he seems to test people a lot, especially new people he meets. I can attest to this. When I was still studying in Cebu, he comes to me and makes "lambing" to me to get what he wants and when I don't give it to him, he throws a tantrums, and not ordinary tantrums, he throws anything within reach of him. That's why we don't have anything breakable in our living room, because he broke almost everything! But what I noticed then was that he never did that to Gina (the one who takes care of him). And then when I cam home for good after college and started to discipline him, tantrums rarely happen and instead it was my dad, who is rarely at home, he does that to. He seems to measure until where a person can handle him or how much he can get out of a person. That is something that will have to be improved.

On the positive side, the teacher informed us, that he has been mimicking a lot lately and is a good sign when it comes to his speech. In one way or another it does seem that he is trying his best to learn to speak. And he is starting to write on his own which is a good thing and hopefully he will start to learn to read. As for now, he may start to have the 4 hour a day schedule instead of his 2 hour a day schedule. Hopefully, I will be able to document all his improvements that I will need and hopefully I will be able to be hands on with his care so that his teacher will learn to respect me more as his sister and learn to speak directly to me.

My goal here is to learn to accept my responsibility towards their care so that I won't have to rely on our helpers to take care of them when we migrate to the US and hopefully I will also be able to convince my mother to do hands on care for them. I don't really know if my goal is realistic or attainable because for one thing, I am not open to my parents about my future plans because I'm afraid that they might get mad at me or get offended. But the truth is I want to set an example to them so that they will accept their responsibility as parents so that while they are still young they will gain the love and trust of my brothers.

I know I have a responsibility too, but I believe I am entitled to live my life at the moment while they are still capable to take care of the kids. I admit that I am in a serious relationship and we are thinking of getting married in two years time, and if my parents would not permit this because they want me to take care of my brothers it will really break my heart. I love my brothers will all my heart but I have to love myself and make myself complete first before I can handle them. If my parents can see that, I would be the luckiest person alive!

My Journey Starts Today

Over two weeks ago, while waiting for the results of my board exam to come out, I had an idea. As I was browsing through possible courses to take, I came across a non-formal certificate program given by UP on Caring for the Special Child. Right away I was enticed and decided to sign up for it, no second thoughts.

As a sister of two special children, Ryan who is 19 and Robert who is 10, I have been very well exposed to special children because apparently I am their elder sister and for the most part of their lives, I was there with them. So why take this course when I live with them and I know them all too well?

It's because, I don't really know them! Yes, their my brothers and I see them almost everyday, I know their condition, but even through all that, I don't really know them. I can rarely understand what they are trying to say. And for the most part I don't know how to handle them. I actually blame myself for not spending more time with them. I do regret not trying to even study their condition until such the time I started my Nursing course.

Don't get me wrong, I do love my brothers so much and I'm not ashamed of them. But when you're young you tend to have a lot of dreams and want to do a lot of things, taking care of my brothers was the least of my worries since my we had an old helper that took care of them. Being the only "normal" child in the family meant perks for me, going with my parents travelling, and to special occasions while my brothers are usually left at home because the old nanny thought they will only cause trouble. I didn't mind that at first, nor did my parents because they were also very busy with work and business.

Things started to change when I turned college. Our mother decided to work in the US to help my dad, who also worked abroad, take care of the expenses. Being the eldest in the family, I had to play mom and boss around the house, which was hard to do at 17. Because usually at that age is when you first get exposed to the outside world. I was so immature then, that I constantly spent time out of the house with my friends not, thinking that I wasn't paying any attention to my brothers anymore.

It was during Robert's first seizure attack that I finally got a wake up call. It was then that I saw how fragile they were. I realized that just because they looked healthy, that didn’t mean that everything was ok. There was still something that needed special care. That night at the hospital changed my whole life. It brought me to the reality that one day they will be in my care and one day our helpers would not be there to take care of then.

I cried a lot after that night because I had a hard time understanding. At first I have to admit that I the thoughts that came into my mind were very selfish. At that time I was 17, I was an Accountancy Freshman, and I had always pictured myself as lawyer or a journalist, I wanted to travel, and have fun, have my own family. I felt my dreams crash down on me then. It took a while for me to accept the fact that I had a life long responsibility on my shoulders.

What made me see reality and clear my mind was pure serendipity. A month after Robert’s attack, my grandfather died quite tragically. He was a quiet man and we never had a chance to talk heart to heart since I was too young then. On the day of his funeral, one of our family friends approached me, she told me, “You know what? A few days before your lolo died, he was talking about you. He said he was so worried about you taking the responsibility of taking care of your brothers. Your lolo said that he was proud of you because you took the responsibility without a complaining.” I felt so bad for all the selfish dreams that I thought had crashed on me. That day, I decided to change myself. The following semester, I finally gave into my mother’s wishes to take up nursing because I realized that being a nurse would mean that I would be able to understand my brothers better at the same time, I might be able to earn enough for me to support their needs.

Eversince then, my brothers have been my inspiration. I studied well and just recently I passed the Nursing Licensure Exam. But my tall tale does not end here, because eventhough I am already a nurse, equipped with medical knowledge, I found that I still could not get close to my brothers thoughts. Maybe because I have been away for so long that they would sometimes prefer to stay with their nanny. I felt so sad that after everything that I went through I still feel that I was not equipped to take care of them and time is running fast for me, soon Ryan will be an adult in numerical age and Robert will be an adolescent. Our helpers will not be around forever and my parents may become too old to take care of them.

That is why, after my oh soo long story, I decided, this is the right thing for me to do. Hopefully this course will give me a different perspective of how to take care of my children with special needs, most specifically my brothers.