As we all know, the definition of insanity is doing the same thing over and over and expecting a different result.

Irene is obsessed with the telephone. She wants to be on it all the time. Doesn’t matter who’s on the other end. She just wants to feel that she’s communicating with someone, anyone.

And she won’t hang up unless you force the issue and do it first.

She cannot recall phone numbers, but she can copy them from a piece of paper to the dial, one number at a time, carefully, and make a call. We keep this in check by having a list of her favorite friends that she can call once, during her phone time in the early evening. We must be very careful to keep all phone numbers hidden from her, as she will call any number in front of her. She has talked to the poor Winder Dairy lady more times than she can count. The lady at the power company knows Irene AND her doll. So far we have learned how to keep her from calling the world, but it’s a constant vigilance kind of thing.

Well, the other night, after she had gone to bed and her companion had retired for the night, Irene picked up her bedside phone and pushed re-dial, just to see who might answer on the other end. Usually we dial in a few numbers that don’t make a whole phone number so that it won’t redial at all. But somehow, someone during the day had called me on that line and so there was my home number. When I answered, Irene was simply thrilled. It was midnight.

I told her not to call again until morning. She called again at 1 a.m. and 5 a.m. She cannot control this compulsion.

So the next evening, when I had gone out, I came back to find seven messages from Irene. She called one more time, and was again thrilled when I answered. “Well! There you are!”

I have to keep reminding myself that it isn’t necessarily me Irene is after, that it’s anyone, and I work on protecting my own sanity and refusing to feel guilty that she cannot have my phone number at her beck and call. Once, years ago when she was living in a group home, she spent Christmas Day with us, and could not stop calling her group home supervisors. She would sneak off and dial them while we were opening gifts. She almost ruined their day.

So the other night, I finally told Irene’s companion to go put another number into her bedside phone. What the companion put in was Irene’s own cell phone number.

The next morning, Irene showed her cell phone to the companion, and said, “What’s this saying?”

It said 48 new messages. She had called that number 48 times. I guess she couldn’t hear her own cell phone ringing. She was still convinced it was my number, I guess.

Or maybe it didn’t matter whose number it was. She was willing to try 48 times in the night to get someone to answer her. Same thing, over and over, expecting a different result…..

Families who lead normal lives are missing out on so many levels of insanity that it’s kind of hard to describe it to them, don’t you think???

Solution for this week: try to get different sleeping medications for her.

May help; may not. But I do what every family does: keep trying. Keep trying over and over and expecting a different result.

Get the butterfly nets out and catch whichever one

It’s Irene’s birthday coming up again, on March 24th. She cannot stop talking about this fact. More than anything, Irene loves to have people sing Happy Birthday to her, most especially at restaurants.

One year, many years ago, I decided to give her a real surprise, one that she could refer to all the rest of the year and years to come. I took my video camera and planned three hours to give to this thing. (The day before, I called ahead to arrange my shoots.) I started at the dentist’s office. The whole dentist’s staff stood around a dental chair and sang Happy Birthday to her. Then I went to the bank where she loves to draw out a small amount from her little account every week. All the tellers gathered round to sing. Then I went to her favorite restaurant, where the waiters all know and love her. Same thing. The librarians at her neighborhood library, where she loves to visit and take out DVD’s, all sang beautifully. The firemen at the fire station were fine tune. Last stop: the beauty parlor where she gets her hair cut and nails done. They all formed a fine chorus, including ladies under the dryer. Oh yes….and the next week, while I was in Sun Valley, I got the Sun Valley Trio, all of whom know Irene, to play and sing to her. They even added a chorus of Goodnight Irene, her favorite.

The night of her birthday, I gathered everyone around over cocktails and showed the video. Irene nearly fainted with joy. No one could believe I had pulled all this off, but the truth was, everyone got into the thing and loved doing it!

I am still trying to think of what to do this year. My energy level is not what it used to be. I think we’ll have a quiet ladies’ luncheon at my club. But that night she can play her video over and over, which I know she’ll do.

By now you must have heard the news: Kim Peek, one of the main models for the movie Rainman, died on December 19th of a sudden heart attack. Fran, his dad, called me the next day to let us know so we wouldn’t be so shocked when the obituary came out. He said Kim stood up to go to the bathroom and just started to fall, and Fran grabbed him to help him, but he fell anyway. The doctor, upon examining him later, told Fran, “I think he was gone before he even hit the floor.”

The shock and loss are, of course, huge. But in the back of our minds, those who know these two well, is a sense of relief. Kim couldn’t dress himself, needed help going up the stairs, and Fran was wearing out, as one does after age 80. We all wondered who would be able to care for Kim in the way Fran did, keeping his routine 24/7. The routine included going to the public library where the staff welcomed this happy guy who needed quiet time to memorize more books. (One eye read and memorized one page while the other eye did the same thing with the opposite page.) Kim’s brother Brian spoke at the funeral and told us that he and his wife were prepared to take care of Kim in the event that Fran died first, but Kim’s life would never be the same if that scenario were played out. Brian has a job and could not board all the planes Kim and Fran did over the past twenty years.

Fran and Kim traveled all over the world with his Oscar given to him by Barry Morrow when he won it for the screenplay of Rainman. Over 400,000 people have heard Kim’s story and held that Oscar.

Kim and Irene grew up together, although she was five years older. Fran worked for my dad at the Harris Advertising Agency. Kim and Irene went to the same programs over the years. During Kim’s time at Columbus Community Center, the staff realized Kim could save them hours of bookkeeping time by doing all the payroll taxes in his head. Kim knew all the area codes and zip codes in the United States, and all the television stations serving those areas: just a few of the things he stored in his head for fun.

Kim’s funeral was packed with friends and family. Fran paid tribute to Kim’s mom, Jeannie, who was divorced from Fran in 1981, but who loved him all his life, and to Kim’s younger brother Brian and sister Alison, who had to learn to live their own lives in the wake of Kim’s fame. Brian’s tribute to the whole family highlighted how much they appreciated one another, even with all the stresses that this unusual situation brought.

So ends the life of one of the most remarkable children ever born with brain “damage.” His unique talents have enriched and enlightened all of us, in respecting our differences and celebrating the things we can do well. I want to pay tribute to Kim’s enthusiastic ways in life, sometimes to everyone’s mirth. One night they were in Cedar City, Utah, at its famous Shakespeare Festival, watching one of the Henry plays. The Archbishop of Canterbury was kneeling at the altar in the scene depicting his slaughter. Kim, so excited, as he knew every line of the play, stood up and announced loudly to the audience: “In four more lines, the Archbishop’s gonna get it!!”

It was said the entire cast, including the kneeling Archbishop, had to give themselves a minute, as their shoulders were shaking so hard with laughter, along with the audience, that they had to pull themselves together to go on.

The Lord bless you and keep you, Kim. You have given us such joy. We will never see the likes of you again.

I have finally cleverly noticed that I lead two lives: mine and then Irene’s.  I pay all her dental and house bills, and her staff, and keep track of all her friends and their addresses and phones, and I plan and orchestrate the parties she is going to hold.  The party stuff is actually quite fun.

Her very favorite is her Christmas Open House.  She has all her food and drink in her kitchen, and the house fills up quite fast with friends and neighbors. This year she had colored sleigh bells on her Christmas tree as favors for each guest to take home.  We told two young boys (whose loving grandmother is caring for them while their mom is in rehab) that the bells are actually for calling angels and fairies, and so whenever they have a bad day, they are to give the bell a good flip, and the angels and fairies will surround them with love and good luck.  I hope it works.

Christmas Day, Irene opens her stocking and sees what Santa left, and then we pick her up to spend the day at our house.  As we got in my husband’s car, she started to fuss.  My car is in the shop for repairs and I left Irene’s garage door opener in it.

“How I get back in my house?” she asked me.
“Oh, right,” said I.  “We’ll just have to use your opener.”
“Here,” she said, handing me hers. “You have this one.  I’ll use Vicky’s.” (Vicky, her companion, was to pick her up later in the day.)

So the day went on peacefully.  Except for the fact that every three minutes, Irene looks at me and asks, “There anything more under the tree for me?”  She is sitting among ten or twelve gifts, plenty for anyone of any age.  After three hours of this constant badgering, I got tired of this and said, “Irene, listen.  This is a huge haul of presents, from Santa and from family.  You have to stop asking for more, or I am going to go nuts!  Think instead of what you are giving others.  You gave the rest of the family lovely little gifts, and that was so nice!  Good for you!  I gave you ten presents.  But think.  What did you give me?”

She looked at me, thinking, and then brightened.  “My garage door opener!”

So see?  There is a Santa Claus.

Happy New Year.

Irene and I had to pick up a few things at the grocery store last Sunday. I figured it would take about fifteen minutes, max.

I forgot that I am with a celebrity. It isn’t the book that’s causing this; most of the grocery store staff have not read the book. It’s because of Irene herself. This has been going on long before the book came out. Every clerk wants to hug her.

She has been trained to restrain herself from hugging strangers, so she doesn’t go around demanding hugs. No, no. The deli lady comes out from behind the counter, her arms out to Irene, thrilled to see her. The butcher wipes his hands on his apron and comes out for a hug, just grinning with joy. The stock boy climbs down from his ladder, calling out, “Irene!” And holds out his arms, saying over her shoulder as he embraces her, “She is my favorite customer!” The checkout clerk leans clear over the counter for her hug.

It took twice as long. And I am just her entourage, the one with the credit card, trotting along as a hanger-on. As we drive away, Irene says, “I like my store. They know me there.”

I guess we should all have such a store.

As I give talks about the book, the subject comes up now and then of what books I took into the willow tree that made me laugh, and that, in many ways made me. For a recent talk for a book festival, I compiled this list, and thought maybe it would be useful readers of my blog, all nine of you.

Books to Cheer Us Up

A list compiled by Terrell Harris Dougan

Three Men in a Boat, by Jerome K. Jerome. Written in 1898, this travel tale of boating through the locks of England has never gone out of print. It is perhaps the funniest book in the English language.

Robert Benchley’s essays kept me going all through my teenage years and onward. You can find many collections by Benchley. They’re all good.

James Thurber is in the same class. Some of his classic essays are: The Night the Bed Fell, The Pet Department.

Frank Sullivan is another wonder. Look for one called Yvonne.

Clarence Day, Jr. wrote Life With Father from his bed, crippled with arthritis. It has melted the hearts of the English-speaking world and kept me giggling when unable to sleep.

Mark Twain. Hs Innocents Abroad and Roughing It are worth their weight in ten of today’s sitcoms on TV.

Carl Hiassen. This Florida writer writes about bumbling criminals and a mad ex-governor with a rage for preserving the Everglades. Perfect plane reading. Native Tongue is one of them, but get them all.

Dave Barry. His Complete Guide to Guys is a must for any prospective bride.

Bill Bryson. A Walk in the Woods and his memoir, The Thuderbolt Kid, are classics that should stay in print forever. Also his essays about America, I’m a Stranger Here Myself. The one about getting a haircut is side-splitting,

Erma Bombeck. Anything she ever wrote was superb. She ruled while she was alive in the genre of housewife humor.

Woody Allen. His books of essays, such as Without Feathers, show how this guy was funny from the get-go. Many of them published in The New Yorker.

I was honored to be the luncheon speaker a few weeks ago at the 60th anniversary of the New York State Arc (or NYSARC) in Albany. I learned that in 1948, four years before my father wrote his letter to the editor asking other parents of children who had been diagnosed with mental retardation if they would be interested in forming a parents’ group to start community programs, another woman in New York had done exactly that. She was Anne Greenberg, a parent who had an idea whose time had come.

She placed her ad in The New York Post, asking the same question my father asked, and ten people met in a living room in the Bronx. The next meeting, twenty parents came. By December, an auditorium overflowed with 300 people, flowing out into the halls.

The very same year my dad wrote his letter, Anne and her crew had organized not only a day care center for children, but the first sheltered workshop in the country for adults with developmental disabilities. Over the next 59 years, they set up clinics and workshops for parents to learn how to cope and advocate for their children. Their 55 chapters throughout New York now provide the widest variety of activities and are the largest non-profit provider of services to this population in the country.

What they have done is truly the stuff of legend. It was an honor to be with these people. It felt like coming home. We speak the same language: the language of organizing instead of agonizing, of humor and hope instead of despair, and the sure knowledge that without a hurt a heart is hollow. Times are very tough today financially, but over sixty years, this is nothing we haven’t dealt with before. The fist bumps, high fives, and hugs that went around on October 22nd in Albany let me know our history and strength will live on despite all odds, despite all conditions. Anne Greenberg’s legacy has reached way too far for any of it to disappear.

So congratulations to the New York State Arc (NYSARC). They embody today what Margaret Mead saw when she called us “the most effective voluntary action group in the country.” It was truly a joy to be “home” again.

Everyone says people who have the diagnosis of mental retardation have no focus. I find this odd, as I went to Stanford and I don’t have this diagnosis and I have the attention span of a gnat. Meanwhile my sister, who has a big-time diagnosis with a supposed mental age of three, zeroes in every day on exactly what she wants and then gets it.

What she wants is money or snacks, no preferential order, but those are her goals, all day every day. Last month we were playing Uno with our game group, and I thought she had dealt the cards wrong. When I tried to correct her, the rest of the group told me she had dealt perfectly. I said, “Irene, I’m sorry. What’s the matter with me that I think you can’t deal cards?”

She smiled at me and said, “Your brain isn’t awake yet. Pass the nuts, please.”

I wish I could remember what my goals are. I wish I could focus on just one for more than five minutes. I wish I could forgive as quickly as Irene does when someone insults me. But I prefer to get all huffy and brood on it.

Halloween went splendidly. Irene chose to dress as a schoolteacher, which is kind of easy, and that’s what she is every year. She made a scarecrow at her special needs church group, which we are all very proud of. At the church Halloween party, Russell, her boyfriend, gave her another bracelet. She says he asked her to marry him again. “So, what did you say?” I asked.

“I said NO WAY.”

I am relieved again. “Why?” I ask.

“I like my house here and my life here.” Oh good. Whew.

I have no idea if Russell asked her. She likes to make stuff up. But I have seen Russell, who also has special needs, and he is a tall doll of a guy, so I can see why Irene wants him for her boyfriend. But getting married is not one of her goals, compared to money and good food. So she remains focused, while I flit from one task to another, only half finishing any of them. I know I have some goals. I just can’t remember where I put them. Frankly, I have a lot of special needs myself.

I got a marvelous surprise a couple of weeks ago.  It was an invitation to speak to a book club.   The surprise was the address: 518 J Street!  If you’ve read the book, you’ll know this was the home I  got to return to after forty years.  My daughter Kate and her husband John had bought the house, so I found myself diapering my first granddaughter, and then my second, in that house.  They had a very happy twelve years there, and I spent a great deal of time there as well.  Then Katy, like my mother, decided it was just plain too small for them, and once again (just as my first grandchild, Emily Terrell, turned twelve – just as I did) we all drove away from that magical place.

So to get invited back home again simply blew me away, and when I wiped the tears away, I told them of course I’d come, and could my sister Irene come with me?  They not only said yes, they invited my children and grandchildren a few days ahead so that they could see their old house too.  It has been a highlight of our summer, and here Irene and I are on the evening of the book club.

Thanks to Marie and Marc Wintress, the owners of 518 J Street now, for inviting us and having such a wonderful evening for us.  It was as few days before my birthday, and they even had a cake and candles!  Life is wonderful.

As far as I know, the only living member left of the Big Kennedy Generation is Jean, now 81. I wish her well.  She was Teddy’s closest pal in the family, apparently.

What a family.  Teddy’s son Teddy Jr. said at his funeral eulogy to his dad that when they returned from vacations with Teddy, they were all “injured and exhausted.”  I’m sure all the Kennedys continue to feel that way, vacation or not. Public life and public service at their pace would leave anyone feeling that way.

They had, some of them, anyway – and may still have, in the next generation, their wild and truly uncivilized side.  In past years, some Kennedys have been known to trash hotel rooms or condos and then leave without paying.  One year many years ago, Snowbird ski resort banned all Kennedys from checking in at their hotels due to past damages and unpaid bills.  My father’s ad agency owned a Park City, Utah condo and rented it to Kennedys.  The damage they left behind was in the thousands.  One can just imagine how they must have behaved, both inside and outside the places they rented. They even left the properties they rented injured and exhausted!  I cannot name which Kennedys they were, as I never found out.  But let us just say it was their least attractive behavior.

However.  However.  And I say this in all humility and sincerity: nothing can ever diminish their leadership and legacy of service to people with mental disabilities.  They were the changing force in this country.  Without them, we would probably just now be noticing that here is a downtrodden and forgotten population that will blossom under our care and attention.

We have their sister Rosemary to thank for all of this, because what happened in her life made them all feel so very helpless and guilty.

Rosemary had a mental disability that was fairly mild when you look at the range of retardation in this population.  She was probably just a slow learner.  The trouble was, all her siblings had IQ’s that soared over the 130 mark.  When she became a teenager, she worried her father, old Joe, because she was sneaking out of the convent she had been placed in and wandering the streets in the middle of the night.  Her explosive tantrums from out of the blue were another frustration.  The year was 1941. Joe Kennedy sought the best medical and psychiatric advice he could find to help Rosemary control her moods and erratic behavior.  The doctor he trusted most suggested a prefrontal lobotomy.  It was still experimental and probably had never been used on a person with mental retardation.  The process was to use an instrument like a butter knife to slice down through her brain while she was still awake, with just Novocain on the skull, while the surgeon asked her to recite nursery rhymes or do addition and subtraction for him.   When she could no longer say the words or do the figures, he stopped.

She came out of the operation able only to mumble a few phrases, and spent most of her time staring at a wall.  Her entire personality was gone. The damage the prefrontal lobotomy did to Rosemary shattered her mother, Rose, who finally sent her to live in the nicest institution she could find, and she rarely spoke of her again for years.  Eunice said that for a decade, from the time she was twenty until age forty, she really had no idea where Rosemary was.  (Source: The Kennedy Women by Laurence Leamer.) Then, as Eunice grew in maturity, she found her, and became her guardian, friend, and champion.  She then reintroduced her to her brothers and sisters.  What they did about it then was to stop agonizing and to use their power.  And they did.  The rest, the Special Olympics, the Flame of Hope sheltered workshops which lit the way for us all, the federal money and legislation guaranteeing these citizens the right to be included, in schools and in our communities, still resonates throughout our history and into our future.

I have decided to forgive them for putting their skis on inside and tramping about and destroying furniture.  I don’t know where their minds were.

But I know where their hearts were.  And we are all the better for it.

Rosemary died four years ago, at age 86, at a hospital in Wisconsin.  Maybe her family would have done every bit as much for this population if she had not been so accidentally damaged in an effort to help her.  But, because of that tragedy, I’m guessing Eunice never let a day go by without thinking of another way to help her sister and all the children born with a brain injury, and reminding her brothers they’d better get on the bandwagon.   It’s amazing and wonderful what a little guilt, mixed with a lot of power and energy, can do.

Rest in peace, Eunice and Teddy.  And of course your brothers and sisters.  But most especially you, Rosemary.  You didn’t mean it to happen this way, but your life inspired so much good in your wild and brilliant siblings.  We owe you a huge bouquet of love and thanks.