I get a lot of questions about my brother and i’m sure there are others who are just holding their questions for fear of being impolite. So, i figured i would get everyone a reference for Nathan.
Nathan is 2 years younger than me (s0…. 27, right??) and has a neuro-genetic disorder called Angelman syndrome(AS). AS is characterized by developmental delay, seizures, jerky movements(especially hand flapping), frequent laughter, and a happy demeanor. In scientific terms:
“AS is a classic example of genomic imprinting in that it is usually caused by deletion or inactivation of genes on the maternally inherited chromosome 15 while the paternal copy, which may be of normal sequence, is imprinted and therefore silenced.”
I don’t know what i just said.
Angelman was the last name of the man who first diagnosed it, but those with the disorder are frequently called Angels because the often unusually happy and smiley. Now, that does not mean they are ALWAYS happy. Here is a sophisticated chart that i have devised to help you accurately identify the mood structure of someone with AS:
If you have food or drink and he doesn’t, WATCH OUT. Actually, even if he DOES have his own, he’s still going to think yours looks better. Hmmmm, i tend to have that same food lust issue as well. The classic Nathan stealing food/drink story comes from a family reunion about 15 years ago. A cup was within arm’s reach and, before anyone could stop him, he took a nice big chug…. from someone’s spit cup. The look on Nathan’s face once he lowered that cup was pretty classic comedy. It was a distinct “WHO THE HELL DRINKS THAT STUFFFF?!!!!” Luckily, we don’t spend much time around people with spit cups. That’s a classy family trait that did not get passed down.
The main characteristic that people have a tough time understanding is the lack of verbal skills. Some AS people do have limited speech, but Nathan has none. Do not confuse this with someone who is QUIET. He can certainly make noise. This is one of the reasons i can sleep through just about anything. Having a brother who can’t talk does have its perks. I’m pretty sure i would have been punished a lot more in my youth if i had a brother who could tattle.
Just as you can often identify someone with Downs just by physical traits, AS people also have some frequently similar qualities: wide spaced teeth, wide smile, flat back of head, protruding jaw, wide set eyes, and light pigmentation. A day on the beach with Nathan is like spending time with Casper. A very easily toasted Casper. Nathan is also the only one in the family with blue eyes. AS is often accompanied with epilepsy, but Nathan’s is usually under pretty good control by medication. Oh, the pills…. LOTS of pills… hidden in a spoonful of coolHwhip. He walks on the balls of his feet and has a very jerky gait. There is also a lot of arm flapping involved. But he can move pretty fast if he wants to… especially if he has food in his line of target. If he decides he doesn’t want to walk anymore, he stops and sits down. On the ground. This wasn’t a big deal when he was small, but now that he’s taller than i am, it’s tough! Last year, we had to drag him off of the light rail track, because he decided to take a seat before we actually got on the train. To us, these situations are humorous, but people watching usually watch with a mixture of confusion and pity. I guess you people take it more seriously from the outside.
Nathan is vaguely potty trained. At his group home (which he loves), he never wears diapers… but he doesn’t always have the same bladder control when he visits home. I think it’s because he never learned that he had to. He’s often sneakier than people give him credit for. When my parents would leave me babysitting, he could suddenly turn into a monster who thought poo on the wall was a great decorative option. This is why i’m so unphased by crap, pee, and vomit…. but don’t mention in public that you’re ok with crap, pee, and vomit. It attracts undesirables.
AS affects about 1 in 15,000-30,000 births(apparently exact math is not the medical profession’s forte). People often ask if i’m scared of having kids with AS, but only a small percent of families ever see more than 1 occurence. Besides, why would i be scared of that? That’s the only kind of kid i know how to raise! AS has recently gotten media coverage due to the fact that Colin Farrel’s son has it as well. You can even see Colin on Letterman talking (in the sexiest accent on the planet) about Angelmans and really pimping the foundation supporting medical research: Colin Angelmans Even though there is currently no cure, they have cured the characteristics in a mouse. It’s exciting that the cure seems close…. but i don’t know that i want Nathan to suddenly learn to speak. If he starts talking, i might get grounded for life. So many possibilities arise when someone with access to the media starts supporting an organization. In fact, i think this is a great reason for me and Colin to start hanging out.
Nathan, like most AS kids, has an incredible fascination with water (Colin mentions that too, actually). Nathan loves The Muppets. LOVES THE MUPPETS. If the Muppets are not on the tv, he will demonstrate his vocal ability. Loudly.
Truthfully, he is also not opposed to The Three Stooges and Arsenic and Old Lace.
When i was young, “retarded” was always the word i used to describe Nathan. “Severely retarded” was the best choice and everyone understood what that meant. Using the term “retarded” on it’s own simply confused people….
ME: My brother is retarded.
FRIEND: Yeah, i know, my brother is totally retarded too.
In fact, i still use “severely retarded” from time to time simply because “a person with developmentally disabilties” still isn’t a term the general public identifies with. Plus, it’s a lot to say. The newest trend in political correct language is to put the person first and the description of their abilities second. I find it a little pretentious to think that changing your vocabulary is going to make the situation any better. It’s not. The generation who grows up with this new phrasing will find a way to make that derogatory as well…. and then we’ll have to change the language again.
I have some friends who use the phrase “that’s retarded” or “you’re retarded” when someone does something ridiculous. I don’t find it offensive at all. However, if someone was referencing a person with disabilities and said, “Get a look at that retard over there”, i would be upset. But, honestly, i don’t have friends who are jerks like that. Even my friends who do use the phrase “retarded” often follow it up with an apology… which is pretty funny… and then i threaten to tell my mother what they said. It’s not a big deal to me, so don’t worry about it. But if you ever say anything mean about my brother directly, i will cut you.
In recent years, there has been a great effort to remove the “R” word from our vocabulary. My mother even has buttons that say it:
I haven’t quite made that leap yet…. but i also don’t have problems with “That’s gay” or “That’s lame” or “That’s so Raven”. Perhaps i’m a little disabled when it comes to political correctness. Perhaps i’m even a little slow when it comes to change…. retarded, even.
(Don’t tell Colin i said that)
In conclusion, i love my loud, messy, drooling little brother more than anything:
….even if i DO put antlers on his head and laugh at his expense. Isn’t that what big sisters are for?????