Kimberly (kimberly_a) wrote,
Kimberly
kimberly_a

  • Mood:

My Brother Alan

Born when I was 16 months old, my only sibling -- my brother Alan (or Nally) -- is one of the most important people in my life. We didn't get along very well when we were small, because our temperaments were so different, but now I adore him. I've been meaning to write a journal entry about him for some time now, but it always overwhelmed me when I thought about it, because there's just so much I'd like to say. So I'm not going to try to write any sort of definitive treatise about him, but instead just scribble some various thoughts.


Nicknames

Well, first I should probably explain how I tend to refer to Nally, because I know it can be kind of confusing. His name is Alan, but Mom and I have always tended to give him lots of nicknames.

An entire class of Nally's nicknames stem from a period of time when he and I went through a stage of talking backward when we were kids. Well, not extensive talking backward, but some, especially with names. I was called Ymmik (which he still calls me much of the time), and he was Nala (n-al-uh). [Our neighbors were Pillif (Philip), Eegud (Dougie), Veets (Steve), etc.] As a result of this, Mom and I still often call him Nala, Nal (rhymes with "pal"), and Nally.

The rest of Alan's commonly-used nicknames stem (again) from one particular source: the diminutive "Alley". We often call him Alley, Alley-Oop, and Ooper.

I most often call him "Nally" ... partially to differentiate him from my close friend named Alan, who lives up here in the Bay Area.



Williams Syndrome

Nally has a rare genetic disorder called Williams Syndrome, but he wasn't diagnosed until he was about 11 years old. We always knew that he was "different," but we didn't know why.

As a baby, he cried *all* the time. The doctors said it was colic, and that it would stop, but it never did. My mom finally had to learn to just leave him alone and let him cry himself to sleep, because nothing calmed him down. She found it nerve-wracking, because I had been such a quiet and well-behaved baby. She just didn't know what to do.

As Nally got a bit older, it was clear that he was seriously hyperactive (he was diagnosed with ADHD) and ... uh ... destructive/inappropriate in his behavior. When friends would come over to visit during the day and hear massive crashing and apparent destruction coming from behind a closed door, Mom would explain, "Alan's taking a nap." He would unceremoniously grab the breasts of strangers (or mannequins in stores). He would run off and hide under clothing racks. He later bit one of his teachers on the leg after overturning several desks and racing around the room.

He began walking and talking very late. He had a lot of trouble with academic work, and was held back a grade early in elementary school. (First grade? I can't remember, exactly.) He wasn't "mentally retarded," but he most definitely needed extra attention from teachers, who found him absolutely exhausting.

He was always making noise, always running around, always breaking things, always getting in trouble. Also, oddly, Nally didn't look like anyone else in the family, and no one knew why.

Then, in 1981, we found out why. My grandmother (Mom's mom) was reading The National Enquirer, or some such rag, and saw an article called "The Pixie Children." It had several photos of a bunch of pixyish kids who all looked exactly like Alan ... and none of them were related to each other. The article talked about something called "Williams Syndrome," which caused all these kids to look alike. She showed the article to my mom, and my mom took Alan up to see a doctor in L.A. who specialized in Williams Syndrome. The moment he saw Nally, he diagnosed him. There was no question in his mind.

They ran a bunch of tests on Nally and he was definitively diagnosed. Suddenly, all these years of confusion were cleared up. The horrible colicky infancy, the hyperactive childhood, the trouble with school, the unusual facial features ... all were characteristic of Williams Syndrome, as was the hernia he'd had as an infant.

Alan got lucky, in that he's a very high-functioning Williams Syndromer. He doesn't have any of the common heart problems, and his learning difficulties are much milder than the average Williams Syndrome kid. He was able to graduate from a normal California high school, though he took all of his academic subjects in the "special education" versions.

Since there isn't any treatment for Williams Syndrome, his being diagnosed mainly helped my mom, in allowing her to understand what was going on. She was able to get involved in the early stages of the formation of the Williams Syndrome Association, which was (and is still today) primarily a support system for the parents. Alan generally doesn't like to be identified with other people with Williams Syndrome, because so many of them are lower-functioning than he is.

Last year, I attended a Williams Syndrome convention with Mom and Nally. I was amazed how many people were there! When we first began attending such events, about 20 years ago, there were usually about a dozen people. Now, there were thousands. Many more doctors now know about the disorder, and so it is more often diagnosed now, whereas many parents previously just didn't know why their kids were acting so weird. Now they can get a lot more support.


I had more stuff I wanted to write about him, but I'm worn out now, after writing what I've already got here. I'll write more about Nally another time.
Tags: family, nally, williams syndrome
Subscribe

  • Resting Up

    My stomach has been doing okay since last Tuesday, but walking to CWC on Friday totally wiped me out, so apparently I'm still tiring easily, still…

  • The Health Project

    I've been working hard lately on the physical and mental health project for the new year. Last week I only went to the gym twice, but that's two more…

  • Thanksgiving Weekend

    So I dyed my hair green a few days ago. I didn't bleach my hair in advance, with the intention that the dye color would show only on the gray parts…

  • Post a new comment

    Error

    Anonymous comments are disabled in this journal

    default userpic

    Your IP address will be recorded 

  • 11 comments

  • Resting Up

    My stomach has been doing okay since last Tuesday, but walking to CWC on Friday totally wiped me out, so apparently I'm still tiring easily, still…

  • The Health Project

    I've been working hard lately on the physical and mental health project for the new year. Last week I only went to the gym twice, but that's two more…

  • Thanksgiving Weekend

    So I dyed my hair green a few days ago. I didn't bleach my hair in advance, with the intention that the dye color would show only on the gray parts…