Take back the R-word or end it?

Forrest does not like to be called , or to call others "stupid". He gets it that when most people use the R-word, it means just that. I tried to take back the word "retard" for the last 25 years. You know, as in "reclaiming" it. I now officially give up. I respectfully hand it over to the younger folks in this country who are advocating for the disappearance of the R-word from everyday put down language. These are youth who have intellectual disabilities and their true friends who really know what it feels like to hear the R-word everyday at school, by their non disabled peers, used in sitcoms on TV and even sometimes, by their families. Ouch. Big OUCH.

Today March 9th is "SPREAD THE WORD TO END THE WORD" Day and I think you should read this blog by Evan Heller, 17, a senior at Attleboro High School in Massachusetts, who has been volunteering and coaching for Special Olympics for eight years.

http://blog.govdelivery.com/usodep/2011/03/my-name-is-evan-call-me-by-it.html

Love, Mom

Gold Mine of My Golden Heart

Garage sales are a double bind. How does it go? "One Down Syndrome guy's treasure are another mother's junk" or something like that. You know what I mean. Taking Forrest garage sailing can be dangerous. Frequently he is given stuff for free. While he is overjoyed, I am thinking, " where will Forrest store that and how soon can I get rid of it?" This morning he was given a 100% cotton 12 foot long American flag made in Valley Forge at a garage sale down the street. I haven't touched one of those since being in the girl scouts. Wow, he was to thrilled to get home to hang it up on our house. My mind was doing a four decade race between the Vietnam war protests with my parents to the recent Obama election. Could I really put this up on my house without feeling ill? My out: It is the forth of July tomorrow! Perfect, for one day. Forrest will be happy.

Next the kind neighbors offered the whole pile vinyl records for 50 cents. He is beyond excited. “It's the gold mine of my golden heart!”. Those are the kinds of prophetic utterances I get blessed with daily from Forrest.
I like to think of it as a Down Syndrome savant- ness he has. He is now home pulling out the dusty portable LP player from his sister's room. He brought it to the kitchen and started playing. Smiling up the heavens, rocking back and forth to Peggy Lee and the like. I asked him to try another record cause I wasn't groovin' just yet. "But mom, these are the greatest love songs from the century!" (he was of course reading the cover of the record to me) Wow, okay, I guess I should get with it and appreciate this "gold mine"of Forrest's. I watched him through breakfast, rocking out to my grandfather's music genre, squinting eyes, doing the Stevie Wonder head wagging thing. Truly he has entered the gold mine of his golden heart.

internalized disphobia

"Having a fear about being around other people with disabilities when you yourself have a disability....or... Not having pride in who you are as a person with a disability...An irrational fear that you are disabled, and well, you are."

Forrest had a hard time the other day at his Day program for adults with unique needs- Artists and urban farmers. He went out on a field trip with the others in his group, most of whom have intellectual impairments and a wide range of silly and fun. He didn't want to be seen with that group. He was embarrassed I guess. He refused to sit in the same coffee shop apparently, and then later hid in the back of the bus under a seat and for awhile they thought he was lost or ran away. He was calling me on his cell, sobbing, "Mom can you pick me up? I'm having a bad day."

Ahhh, Forrest wants to be normal. "I want to be with people on the same level" he tells me. He believes the staff at Project Grow are on "his same level" he wants to hang out with them. He wore a button pinned to his shirt that day that read "I am who I am".

I later reminded him of that button. He's better today and off to his day program with a smile.

looking in the oven for easter baskets

6:53 am the birds are chirping in Portland and Forrest is up looking everywhere...the last one is in the microwave actually, but he missed that spot.He found the other three but put them back, somewhat disappointed. Uh-oh. Mother guilt. He usually loves this part of Easter...finding the hidden easter basket full of candy filled colored plastic eggs...jelly bellies, chocolate bunnies and this year something new - peanut brittle(hey -it was on sale).

But I am worried. We skimped this year because I, like many, couldn't stop thinking of that damn word that is everywhere...sustainability!!....a sustainable Easter? So I didn't buy those cheap easter baskets from China, but I did get that horrible colored grass that's not even made of paper anymore....I hope it is from 100% recycled stuff but I refused to read the label.

Peter and I (yes, I am married to Peter the Easter bunny) created 4 identical paper bags instead of baskets, and filled them with corporate produced candy made of corn syrup most likely. Hey - I did reuse some yellow wrapping tissue from two previous birthday gifts to brighten things up a bit...and I am recycling the paper boxes the jelly beans came in. Does that count? Okay who wants to ruin a 24 year old child's fantasy?

Forrest has now found the last easter "bag" in the microwave now and is dumping the loot on the kitchen table. His face is less than enthusiastic. When I ask him "what's wrong?" and he tells me "I'm looking for cars to play with". I have no idea where he came up with the thought he would get a basket full of matchbox cars. He had an entire collections years ago. I probably sold them at the last garage sale before we moved to Portland. Okay, I did sell them. I wanted him to act his age I wanted to pretend he wasn't sweetly and slowly retarded. I have always felt bad about that - selling his car toys and plastic arm guys without his permission.

Okay...what the...? he has gotten over the no matchbox cars disappointment in a matter of minutes and is now eating sour starbursts for breakfast. Wheeee he is happy again, lying on the couch cooing " oh what a relaxing Sunday!"

I am heading over to Safeway while the other kids are still sleeping... to buy some red potatoes for Easter dinner. I think I'll pick up a matchbox car collection on the way.

Forrest and the perfect date.

Whenever I take Forrest out, all the women want to dance with him. He gets asked all the time. Forrest has always had this uncanny mimicry for complex moves.He usually wears his tuxedo, like a costume or a uniform and this "impresses the ladies" he says.Just a little shy at first, he starts out somewhat stiff, in the lead position, then he surprises them with his big theatrical bust-a-move grooves. Of course, he can overdo it with the hand on the testicles thing (ala the King of Pop). He embarrasses me with his pelvis thrusting thing. It's kind of gross for a mother to see but gets a laugh from everyone else. He gets in a trance and the women love it. He's a serious dancer. He can lead turns and the basic rock step, to his own beat of course. I watch dumbfounded as good looking women line up to ask him for the next dance. It warms my heart. He's really a great escort, opens doors, lets the women do all the talking, is agreeable to anything, and loves to eat. The last dance we took him to had a finger food table and he came back with 10 chicken wings and the entire plate of cheese. About a 3000 calories, But hey, "I am a growing man!" he explains. Forrest is into pop culture stereotype one liners, but this is his strong suit. He makes us laugh and people can relax around him. I am thinking there are many Portland singles out there who could really benefit from taking Forrest out for a date, he is a "chick magnet" and this could really be a plus for some. And he is safe, he won't do any of those come on moves, he'll want to come home early to his own bed. And you'll laugh all night. What more could you want?

Army guys

I was taking Forrest to work with me one morning in downtown Portland when we saw a young man wearing his army combat uniform. You know the kind, it's the camouflaged desert storm look. The soldier was talking with his friends as he got off the Max. I imagined he was on leave from Iraq, glad to be home again and hanging with his buddies. Forrest took one look at him and proclaimed , "See mom, he's not dead yet!". Forrest has an issue with vocal control. He is louder in public than he should be. Mortified, I pretended that I didn't hear him as we got in line in at Starbucks.

I know exactly what Forrest was really telling me. He was saying, "See mom, you were wrong - guys in the Army all don't get killed so you should give me back my army guy action figures that I like to play with". I was busted. He had accused me of throwing away his "army guys" when we moved. Oops. I was cleaning up and "accidentally" tossed those little green plastic guys in the trash. I am a liar. I lie to my cognitively impaired child. I justify it.

At 18, Forrest's selective services registration form came in the mail.It's the "draft" requirement for young men in this country. Boy did I have fun with that. You get to fill out the part explaining why you aren't eligible. There wasn't a check box that described why Forrest wasn't going to fight in any war. I got to fill in the blank spots. I am sure I am on some CIA list because of it. Forrest doesn't care about my antiwar liberal peace marching spirituality or politics. He likes playing with those Dollar Store plastic figurines. I am disturbed by this because I think he is glorifying war. I hate admitting that those billboards and television ads really work because my sweet son with an IQ score of 51 thinks it would be fun and glorious to carry a gun and shoot things. Forrest envies the guys in uniform. He wants to be powerful and wear one of those too. I won't even let him buy camo patterned clothes. It's one of the main consolation prizes that I am sure many mothers over the centuries of disabled sons have been grateful for. Now it's daughters too. But like many boys his age,(developmental age?) Forrest has a thing for war movies and army action figures. Thankfully he doesn't know enough to beg me for the World of Warcraft PS2 game.

I had to DO something so I tried to explain the realities of war and combat. We looked up the numbers of killed soldiers so far in Iraq. As of a few weeks ago it was 4,379 US Soldiers killed, 31,669 seriously wounded. I cried in front of him. I wasn't faking it. Forrest really gets nervous when I cry and he has never bugged me about playing with "army guys" after that. But when he saw that soldier near Pioneer Courthouse Square, everything clicked into place. He knew I was wrong and he wants to play with his army guys again. "See mom, that guys not dead yet!"

parent-of-retarded-kids discounts.

I asked the guy at the counter of the new frozen yogurt store if there was a special rate for people with developmental disabilities. I was being serious. Parents of kids with cognitive challenges think this thought often I'm sure, they just don't say it. All the hidden costs of raising Forrest is astronomical. If you add up all the broken and lost items, the repairs, the upstairs floor replacement after repeatedly flushing his grandfather's clogged toilet. Oh that was bad. We were sitting in the dining room having breakfast when all of a sudden water was dripping from the chandelier. My father and his wife turned down my offer to pay the contractors. 4K I think. Thanks dad.

I was treating the whole family to the new serve-yourself yogurt place on Hawthorne. Swirl. It was a very warm sunny weekend and I wanted to do something special for the kids. You pay by the ounce and Forrest couldn't control himself. All those flavors and topping choices. Okay maybe it was my fault. This is exactly why I NEVER take him to buffets. His concoction was over $8. We all managed to keep our bowls in the 3 - 4 dollar range as Forrest eyes grew bigger and bigger. I tried to do portion control in public, and I sounded like a very bad mother. Embarrassed and frustrated,I did what every parent wants to do. I asked for the parent-of-a-retarded-kid discount. The guy showed me some empathy as he rung up the total. $26.24. He kindly offered me a frequent customer punch card. He punched all 10 of the slots. It's hiding in my wallet for the next time I go there. By myself.