Wednesday, December 16, 2009

Forrest does time

He doesn't swim in linear time. He lives in the The Power of Now He is good at repeating things over and over again until he gets it right...or not. Like telling time. For about 20 years now teachers have been pulling out the newest curriculum for teaching "delayed" kids how to read a clock. There are big debates about which clock to use, digital or the round things. The thing is, he can say "oh it's 11 33!" from a digital clock, and we get really excited that he knows what time it is...but this doesn't mean anything to him. He is just trying to sound like us which impresses us. For linear time folks, 11:33 might be translated to " oh shit I am late!" or "time to think about lunch", or many other things. Forrest will tell you it's almost lunch time from hunger and olfactory cues.

Forrest doesn't think in minutes and hours. For example, mornings are not mornings unless the "sunshine is out." This is a problem every winter. My problem. It is worse now that we live in Portland and it is really still dark at 7:00 a.m in January. If I say we have to leave in 5 minutes, which is my way of saying hurry up, he isn't sure that means get your shoes on or I am going to change my outfit now into a county singer theme and come downstairs later.

Forrest does have strong opinions about time and it boils down to this: he refuses to rush, hurry up, get a move on or hustle. When he started kindergarten, it would trigger a crying melt-down tantrum when I used to say "Hurry up!" in the morning....actually I would "sign" it back then. When he was five we signed everything since his tongue wasn't connected to his language brain yet. What mother signs/says "Hurry up!" to a five year old getting ready for preschool so she can get to work on time? Uh, well, maybe every mother? I don't know. All I know is that Forrest made us stop hurrying every morning. It was too stressful.

One time his physical therapist told us he had to begin putting on his own shoes (no laces) in the 1st grade. Okay fine, we'll set the alarm for an hour earlier and see what happens. The truth was, we didn't have time to let Forrest dress himself, feed himself let alone spend 20 minutes figuring out how to squeeze his cute little toes into cute little shoes. We had jobs. Jobs with clocks.

Wednesday, December 2, 2009

Why Do They Make the Disabled Kids Pick Up the Trash?

I am tired of all this arguing. Why do they make the developmentally disabled kids pick up trash in high school? This has got to stop. My daughter Georgia is a Senior at Cleveland and she was upset when she came home today. She told me about standing outside on the front steps with a group of students waiting for the field trip to start and there were three kids, all with noticeable cognitive impairments, picking up the trash. They were walking around with those little plastic claw things. She felt terrible and was crying about it when we spoke. It made her sad. "Why can't they do something else productive during the day, like taking an art class? Watching a movie would be better than this."

Okay here is the rhetoric: It is job skills training, they "love" it and feel proud to be making the campus beautiful, cleaning up is not a low life thing to do, disabled people have a hard time getting jobs and this could be a real great opportunity for them, they need to get out of the special ed class and get exercise, blah blah blah.

No. Think dignity. Do we want the other 1450 students, some of whom litter the front steps with gum and candy wrappers to be picked up after by non-paid students who are the most vulnerable group on campus? I want the non-disabled students to get to know these "special ed" kids in a more meaningful way. For most of the student body, this is the only chance they will get to know any challenged/retarded/disabled kids in campus.

My daughter wonders why all these years in high school she has never seen any of her typically-abled peers volunteer in the special ed classrooms or hang out and talk to the kids in the Special Ed class. You know - integration!?

The year before Forrest was to enter Arcata high school we did a campus visit. You could imagine my surprise when a mass of students, dressed in orange denim jumpsuits appeared out of the "Life Skills" class after lunch. They were carrying those plastic claw things. This was their "job skills" class and part of their special education plan. The same plan that they wanted to sign Forrest up for. The campus was thankfully full of fresh litter from the lunch period that just ended. Since the school did not place trash cans around the lawn and parking lots, this made for lots of litter pick up opportunity. The teacher and vice-principal stood around watching and beaming at the cleverness of it all.

Well, it stopped before the of that school year. I made them stop.I tried to be nice about it. Heck, I even save them from a costly discrimination law suit in which Forrest and I would have won. After that, the principal informed me that his staff was no longer allowed to speak to me without a lawyer present.

Instead of picking up trash after lunch, Forrest did many things throughout the years. He got job training at a Hospital, then took a weight lifting class, an art class, he even tried metal shop one semester.

When Forrest started his Freshman year,the janitors simply started putting out a dozen or so trash cans around the lunch area, and the kids in detention continued picking up the remaining litter.

Tuesday, December 1, 2009

Santa's coming

December 1st. Forrest asked me today "Is he still alive?" when I put up the St Nicholas on the top of the tree. You do know what he is asking don't you? I think even Jewish kids eventually ask it. You can't escape it.

"Well, he was alive a long time ago. He used to put money in shoes." This was a clever distraction.

This is the Sufi Santa story. There once was family with three lovely grown daughters and very poor but loving, kind parents. "We have no dowry for our eldest daughter!" cried the father one day. A wealthy village elder named Nickolos heard the woeful parents through the open window as he strolled through the cobblestone walkways. He secretly came back after nightfall and left a wad of dinar in a pair of shoes outside the door. The daughter was happily betrothed. A few years later ol' Nick heard the same complaint from the father and anonymously provided for the next daughter, and then the next. Of course there were spies everywhere and the old man pleaded with them to keep his secrets. He wished not to be acknowledged or known for his kind deeds. Some time later the Catholics got a hold of the story and canonized the guy. Somehow my family made him a Norwegian, and the North Pole rumor started after WWII. And the Jesus part of living forever was stirred in there and viola!

"Oh- cool!" Forrest said when I finished the story, then added just in case I was planning something similar, "I like money and presents."

So...is he still alive? If you know, I'd appreciate a heads up. If he is not, please don't tell Forrest.



24 days to go. I haven't figured it out yet.

Super Hero vs. Special Needs

I asked Forrest for permission to write about him on this blog. Of course he said yes, eventually. It was sneaky of me I know. As his mother I can get his consent for almost anything depending how I ask.
“Can I use the word retarded?” He grunted with a scowl.
“Special Needs?” A bigger grunt and a head shake.
“Developmentally Disabled?”
“Nuh uh.” He can’t pronounce that one anyway, nor can I for that matter. It seems to roll out of my mouth in a blither. Forrest is not happy with my questions. He prefers to not discuss his Down Syndromness. But I want to be able to use the word “Retarded” and get his okay. So I do the mother thing:
“I use the word “retarded” because it means slow and beautiful, just like you Forrest.” I do feel a twitch of manipulation here. I am a bad mom sometimes.
“Oh. Okay” he says with a renewed happier tone. Then, “how about love?” he reminded me.
Oh yes, that is classic Forrest.
Whew, that was close. I guess I’ll keep the blog name “Retarded in Portland” for awhile then.

When he entered high school, he was put in a “Life Skills” class for moderate to severely retarded kids 14-22 years old. It was his first non-integrated school experience and it was very upsetting for him. His first day he saw, for the first time, a kid who had seizures once or twice a day in front of him. There was a girl who wore a helmet and who’s face was malformed and screamed when she was excited. A kid with Prader-Willi Syndrome who stole his lunch and wolfed it down before anyone could stop him. The other “special needs” kids had speech patterns that he couldn’t understand. This was a big shock. These were his new “friends” and he wasn’t allowed to leave that room without an “aide”. He developed behavior problems. He came home with bad habits, like pulling his hair out in one spot, making loud squeaky noises, and he began throwing things in anger. He refused to be a part of the group and referred to the kids in his class as “those pathetic people”

I asked him then, at age 16, what was his preferred label for “developmentallydiballebbblah”. He thought about this for quite some time. Back in the 70’s the term we used was “MR” (mentally retarded) for a putdown. Now they used “DD” or “Speeeeeeeecialllllllll” with that mocking tonality. Today I think “Cognitively disabled” is the acceptable term du jour. And you and I are “typically developed”, as in not retarded.

Finally after pondering all the options, Forrest requested that his disability status, when needed, be referred to as “Super Hero”. Works for me.

Thursday, November 26, 2009

Forrest a big fan of food

Forrest has exceptional social skills. He frequently tells people "I am a big fan of food!" when he meets them. It a perfect icebreaker. It's one of his learned conversation openers that really works, after all everyone has something to say about food. If you are socially challenged, you should always have a few of these one-liners in your pocket. Forrest gives you permission to borrow his. Especially on Thanksgiving, which is today.

Yesterday we drove to Seattle to celebrate the holiday with family. As we piled in the van Forrest was doing his excited hand clapping gesture. It's kind of like a dolphin clap, you know with dorsal wrists together...a classic retarded kind of clap. Thing is, you should try it, really it actually MAKES you happy. I call it the Forrest Mudra. Stiffen your hands with fingers bent backwards and tap your palms very rapidly while sitting up very straight. Your eyebrows should arch upward and a big grin with appear across your face. Are you trying it? Do it now.....

See? Auntie Kathy dictated this thanksgiving letter this morning, as we were waiting for blueberry pancakes....after reading this, maybe you'll write your own thanksgiving letter

Dear Mom,

my stomach is talking to me
and I can't wait to eat food (do the the Forrest Mudra here)
I love you like the sunshine through
your lovely eyes.

I've been thinking a lot lately
I'm thankful for the guys in the army
coming back home.
I'm thankful for your smile.
I can't wait until the pancakes are ready.
And also I can't wait until I have BACON
sausage, ham, porkchops, lambchops and
cordon bleu and biscuits and gravy. (try the Forrest Mudra here too)

Happy Thanksgiving,
love,
god in us,
Forrest

Wednesday, November 25, 2009

"Regular"

One day while driving around Portland, Forrest pointed to a busy bus stop and said "I want that." We were driving by a group of people waiting for the #75.

I asked "You want to ride the bus?"

"No" he said, "that guy."

I saw a handsome mid-twenties fellow, holding a sleek shoulder bag , nice jacket, and knew instantly what Forrest wanted. I pushed the heartache back inside and asked innocently, “What?”

“I want to be regular. Like that guy.”

Oh shit, I really didn’t like this part of parenting a young man with Down Syndrome. “You want to ride a bus and look like that guy?” I said with a really annoying cheer.

Forrest was sad, “I want to be like that guy and have friends who come to my house and just hang out and watch TV and have fun”.

Oh God, I could tell what was coming out of my mouth and couldn’t stop it “Oh you are a great guy blah blah blah, and you have friends and a TV in your room blah blah!”

“NO!” he cut me off, “I want to be like him - Regular!”

Ouch. I composed myself, tears sucked backwards like the Wu Li master-mamma I am. Inside I screamed “me too!” Platitudes be damned. Being retarded sucks. No matter how “slow and beautiful” I regard him, Forrest is no dummy. Who wouldn’t wave the magic genetic wand and poof! Forrest the cool “regular” guy. He wants what THAT guy has. Or what Forrest imagines he has: a real life filled with freedom, cool friends, a flat screen TV and wallet full of money…..hey….wait a minute.

My Tourettic impulsive monologue starting coming again, “Well that guy has a job and can’t play video games all day and has bills and has to worry about money, has to make his own food and he probably doesn’t have a mother living nearby to help him--”

“SO?!” was all Forrest said.

Okay, I was being an idiot. Would I ever have the courage to simply say “Yeah, me too”? I do wish Forrest could to go to college, travel the world, have a loving relationship, and yes, enjoy great sex! But here we are. I looked at the cool young man at the bus stop and imagined him my son for a moment. Would I trade that regular son, for Forrest if I could?

I once boasted a bumper sticker that read “Why be Normal?” Well, there are lots of reasons Forrest could tell you. But driving by the bus stop on that morning, all I needed to say was “Yeah, me too.”

Tuesday, November 24, 2009

Counting Retarded - the Beginning

I love the word "retard". Okay I think of my french teacher and say it in his accent, try it with the rolled "r's" "rey- tarrrrrrrd". And in musical notation, the best part of the song; to slow it down and make it beautiful, sweet...aaahhh... "Retard".

That's what I told my son when he finally asked what it meant, "Slow and beautiful" I told him. Then he'd say "well I am not retarded" and I'd say "oh yes you are!" and he'd say "no, you are"
Me,"no you are"
Forrest, "no you are"
Me,"you are"
"no you are..... no you are!"... until we rolled on the floor laughing.

I once asked some high school kids to count how many times they heard they word "retard" or its variations (that's so retarded, etc) in one day during a typical school day. 72. One student, 72 times. Yes, that's right. Okay, you have walk into a high school between the 5 minutes classroom bells and listen really well in the halls with lockers slamming. If you put yourself in the crowded common areas during lunch, especially around the freshman boys, you can hear all kinds of foul language too. And girls, they tend to call themselves retarded in a self effacing apologetic way as in "Oh I forgot to bring _____, I am so retarded". Or in the bathroom when they comment on retarded hair and clothing.

And people aren't just retarded. Ideas and behaviors are retarded too. Teachers, parents, and any kind of rules are at the top of the list.

My son Forrest doesn't want to be retarded any more. He wants to be "normal" he tells me. Well, he is 24 years old and likes Spiderman stuff and coloring books. That's not retarded, that's cool, in a six year old kind of way, I say.

I will tell you a Forrest story: he was born with crooked little pinkie fingers and very almond shaped eyes for a Caucasian baby. Yes, an extra "arm" on the 21st chromosome...47 chromosomes altogether (You and I have 46) giving him the genetic anomaly "Down Syndrome"

Forrest and the Dali Lama are very similar. Besides the shape of their eyes, they do not worry about the past or the future. They refuse to hurry. They have little concern for material wealth and rarely count money or time correctly.