Sunday, January 20, 2013

Dreams for My Brother

As salaam alaikum,

As I was walking drowsily home from work today--another uneventful night shift of one early admit and plenty of sleep--I started thinking of things that my brother and I would do if I were to become his guardian. I imagined me coming home from work and working out in the gym with a personal trainer, and my brother also having a trainer work with him on running and weight training. I imagined how healthy and handsome my brother would be if someone actually challenged him in the gym like that.

Though insha'Allah my parents will be able to take care of my brother for some time, the fact that I'll one day be my brother's guardian does cross my mind. Whether I imagine myself as a single, forty-something woman with her forty-something brother, a wife with kids and my brother being Uncle, a wife with kids helping my brother raise his own child or children, it's something I think about periodically when my mind is quiet and at peace.

It's not something stressful for me, but I must admit, I have lot of dreams for my brother. Dreams that are perhaps ambitious. Dreams that perhaps are unwarranted.

My mother claims she was the first one to say that the baseline in the first few bars of this classic Stevie song, "Another Star," sounded like my brother's head, but I remember it being me that said this reminded me of my brother's head.

It's hard to explain, but having known my brother for the past 25 years of his life, and especially as a child, the first few bars of this song is the closest to what I think it'd sound like to be in his head. What his head sounded like to my family. What my love for him felt like then and what it feels like sometimes now.

My brother has autism and epilepsy. He takes three medications three times a day to not have a seizure daily. The better his seizures are under control, the more I watch him continue to grow, even as an adult. The older he gets, the more hope I have for his healthy and happy future that is more expansive than the college-education paradigm.

My brother, like any individual, is like a bud on a tree, bursting with potential energy at all times. My brother is the son of two loving parents who are helping him plan his future and have fought for decades now to ensure his education and well-being. They are his biggest advocates, and for years I was integral in advocating, as the second closest person to him for many years, who understood his idiosyncrasies, his manner of speech, his desires more than my parents could at times. I was his interpreter for many years.

I could tell my parents that when he sang the lyrics "upside-down world" in a slight minor key, he was distressed and feeling like things weren't making sense. This was back in the days when he was scripting as his primary language, taking very appropriately phrases and refrains from cartoon dialogue and song to express how he was feeling. I watched a lot of the cartoons he did at the time and knew exactly where his phrases came from.

So I'd say, "Mommy, he got that from the cartoon..."

And he'd hold his hands out, as if embarrassed, "No no, wait, stop..."

My brother does not like watching family videos because he's embarrassed by his behavior as a child. I wish...

And this is where my dreams begin. I wish someone would find a delicate way to explain to my brother that he has autism. Which is where I part from my parents' party line. I agree with my mother that it may not be necessary, and why stress him when he already knows he's different, but part of me thinks that if there was a developmentally-appropriate way to explain it to him, maybe he would understand a little bit why its hard for him to communicate things and understand certain things, and maybe he would find new ways to adapt.

Just like it was him who came up with the idea to have a medicine alarm so he wouldn't miss a dose like he has so many times before. Since I helped him set up the alarm on his iPod touch, he hasn't missed a dose since. And he's been on antiepileptics for 15 years.

I wish I could find an sensitive way to explain to my brother his difference and set at ease some of the anxiety I know he feels at recognizing this, and help him move forward with this realization to become all that he may want to be.

I wish I could find opportunities to motivate my brother to do something that not only makes him happy, but helps him participate in his larger community as a productive and happy member of society.

I wish I could, yes, take my brother to the gym, get him a personal trainer that is willing and able to work with a young adult with autism and get him to a state of health he's never been.

I wish I could draw from several male role models for my brother as he continues to become the man he will be.

So many dreams for my brother. Cure is never a question for me. I just want his ability to communicate all that he feels and all that he is to be maximized. I've never known my brother any other way than through the filter of autism, and I see his personality, preserved in absolute innocence that few of us are able to maintain.

I have dreams for my brother and I've had dreams of my brother before, neurotypical, in a suit and tie, walking amongst his colleagues, important people in black and gray with neat suitcases, walking down the streets of Baltimore just outside of Hopkins, him looking up and recognizing his sister, nodding, and continuing with the conversation lingering from his meeting.

And what a beautiful dream it was to get a glimpse of what my brother might have been if it weren't for autism. And to know that I loved my real brother no less or was no less proud of him despite this brief image was a relief. In a realm outside of my brother's body, he exists like this.

And one day, insha'Allah, we'll get to know each other in that way, outside of the filter of autism. I rarely think about that, but now somehow I know.

This is my brother, and I love him and if I need to I will go to the end of the earth for him. That bass line is his head, the sound of my love for him as I understand him. That bass line reminds me of everything I want for him, everything I dream for him.

To start, I want my parents to get set up an email account for him so I can start writing to him to help him with his writing.

And buy him a cell phone so I can make his Head Music his ringtone.


  1. This post made me think of a (ex-boy)friend of a friend. He too has a younger sibling with special needs (as a result of medical malpractice). But his sibling understands his condition, and quite sweetly tells people about it, once he gets used to it. I think it helps break the ice a bit, like it situates him in this world better. This is particularly true perhaps because the older sibling (like you) is a rockstar of sorts. So the they understand that older brother can do x, y or z and invent a, b or c and that's ok.

    (and like you) there's a sense of responsibility, that the older sibling will be the one taking care of things when the inevitable old age sets in.

    It never occurred to me that some parents wouldn't tell their child about something like that.

    And then I think, that all parents do this kind of negotiation with what their children, special needs or not, need to know. Sometimes its intentional and sometimes its not.

    I guess we all wish the best for those we love, that they could fully experience the good things that life has to offer and do whatever we can to hope, wish and pray there.

  2. Wow, this post brought a lot of memories for me...I had a cousin who is not late who was was a sad moment for us when he finally left us.

    I love your strength and the love which you have for your brother.

    May Allah SWT be with you and your family.