Saturday, April 2, 2011

He Ain’t Heavy, He's My Brother.

It’s interesting that April is Autism Awareness month; April 8th is my little brother’s birthday. My little brother will be 36 years old this year. He’s about 5’9” overweight but he’s still “Midget” to me. That was my nickname for him when he was little.

3 month old giggly baby
I remember when he was brought home all those years ago; I was utterly fascinated by this bald, big headed baby boy. He had one of those baby giggles that would have made him a youtube superstar. My other brother and I would spend our days making him laugh because it was utterly infectious.

Then one day he got sick, an ear infection that the ER doctor didn’t catch. By the time the hospital finally admitted him, he was bleeding from his ear. Back then the hospital (luckily it’s no longer in business), refused to let my mother stay with my brother. So they admitted him and took him from us.

You have to understand, in the Philippines, family members are not only allowed to stay with the patient, it is an expectation. There is no better medicine than care and support from loved ones. My mom was heartbroken, dad was out of town on business and no one wanted to deal with a hysterical woman with a thick accent.

The next day my mom, my other brother and I took the bus to visit my brother and the sight of my brother in his hospital bed is still seared in my mind. Our family is close, my brother’s crib was in my parents room, so if he fussed, mom and dad were there for him. So even at 18mons, he knew and keenly felt the separation.

The hospital had physically strapped him down in his hospital bed and had strapped his IV on his head! Just typing that out makes me want to really hurt someone.

We weren’t allowed to take him out since he still had to be on his IV. His little voice was hoarse, he had spent the entire night screaming.

A few days later when dad was back home, we went to get him from the hospital because he was being released. We arrived at the hospital and found that he was feeling well enough that he was in the kid’s playroom. So we went to get him. My brother refused to acknowledge our existence, he didn’t answer by name and completely ignored us, twisting away from our touch. I think I heard my parent’s heart break at that moment.

It wasn’t until he was 6years old that my parents FINALLY found a doctor that was able to tell them what was “wrong” with my brother.  He had begun to talk before that hospital stay, after, he was silenced.

There wasn’t a lot of information on autism; it had barely made it into the psychiatric medical journals. But my parents did their research, made a lot of phone calls and read everything they could get their hands on. This was long before the internet and support groups.

My parents got him involved in the Special Olympics, through that organization; my brother has enough medals and ribbons to make a very full cabinet.  But when he was about to graduate from the special needs classes in grammar school, the only program left for him was to be enrolled in a west side high school. This was a high school in the west side of Chicago, street toughs and uncaring teachers. My brother would get killed going to that school. But it was the only one in our home district. So my parents took the drastic step to look for another option.

They thought they found it. It was in Boston, a private live-in institution. The live-in arrangement was the big drawback, but my parents felt they had to do it. In time, he may end up living in a special community home so he might as well get used to it. But as a compromise, my mother moved out to Boston and my dad supported two households. Mom had to learn to drive.

It went on for almost an entire school year. Until we found out that that specific school’s ‘successes’ were achieved by beating the special needs children into submission.

Mom and my brother came back to Chicago. What they did find was a very good program in Grand Rapids, MI. My brother was enrolled into their school system and mom lived in a cute little 2br apartment. She had her little car and my brother thrived. He continued his special olympics activities and he even learned to show jump horse back riding. 

Every Friday afternoon, my dad and I would switch off; one of us would drive to Grand Rapids and pick up my mom and brother so they can spend the weekend with us in Chicago. Then on Sunday, dad would take them back and he’d commute from Grand Rapids starting his drive back to Chicago at 5am to make it to his office by 8am.

I knew every twist and turn of that drive. Even knew just exactly where I can put the pedal to the medal because there was never any traffic patrol.

But when he was 25years old, he graduated out of the program. He came back to Chicago and now flourishes at the Austin Special Workshop. My brother’s infectious giggles have matured into an infectious smile. It’s featured on their homepage. He’s an artist, my brother studied at the Art Institute of Chicago taking art classes, paints, charcoals, even sculpting. His pieces, when it went up for charity sales, always sold out.

I love my brother, I don’t know if and when I tell him he understands, most of his answers are animated head nods and ‘oh yeah’ or furious shakes ‘NO NO”.  But he’s got his moments.

20 years old
He was always a handsome young man. Looking at this picture, it wasn’t uncommon to have girls giving him inquiring looks and knowing smiles. My brother’s open face and sweet smile always made their days.

30 years old
I love this picture because of that sneaky look on his face, like he’s completely in the joke. My parents take him with them everywhere, they will never think of putting him in a home and separating from him ever again. But they have made arrangements for when the time comes.

When he was small, his favorite song was “He ain’t heavy, he’s my brother” Sometimes when he was upset and no one could get to him, he’d put the song on his little stereo (he had the 45rpm) and sing. Sometimes when he was super upset, I’d have to hold him and sing the song for him.

I’m no saint, neither is he; I know sometimes I irritate him and he irritates me. We’re siblings, that’s what siblings do, for when all is said and done, he’s my brother. 

For all that we’ve gone through as a family, for the dirty looks we got over the years, the well-meaning but nonetheless inappropriate comments and patronizing, we’ve endured.

There is that dramatic line, “I would die for you.” There are very few people I would say “I would kill for.” My brother is one of those very few people.

Because as heavy as he might get, I’ll carry him, because he’s my brother.


  1. Makes me cry and brings back my own memories which I needed as well- Alexi.

    I'm glad he is a survivor as are you!!!

  2. See, despite his challenges, my bro is just like me, stubborn and yes, a survivor. We used to fight over that last piece of cake or pizza, just like any other set of siblings. Because he is so non-verbal, he can't tell us what he's feeling, but his eyes are expressive and sometimes we have conversations where unlike some autistics, he holds eye contact and I can see that there is a synapse that he just can't bridge. A look of utter frustration because he can't find the word to help me understand him. And like me, he's 'sensitive' that will have to be another blog! Thanks for reading!