Other cities in our country celebrate the birth of our nation on the 4th of July. Well, here in Salt Lake City we give a nod to it, and put up the odd flag, and federal government offices close, but we save our sparklers and our neighborhood parties for what is truly important here: the celebration of the founding of a city by people who walked here from Omaha all those years ago. Those of us whose great grandparents were part of this feel very proud and humbled by what they did. Considering the fact that my great grandmother arrived in this valley on a hot day in August of 1860, with bleeding feet wrapped in rags, and I don’t even wish to pedal a bicycle up a hill or walk more than a mile or two anywhere, leaves me especially embarrassed.

When people outside of Utah try to make business calls here on the 24th of July, they are stunned to find most businesses closed. This is because we are celebrating the arrival of the very first Mormon pioneers on this date in 1847. We have a huge parade downtown, and fireworks all over the valley at night. Every father is in his barbecue apron by 7 p.m. whether it’s in his backyard or up one of our cool canyons where watermelons will be chilling in the river by the picnic table.

I have spent this holiday in Sun Valley (see earlier blogs) and Irene’s staff back at home all had other plans for the evening that I hated to disrupt. So I asked my daughter Marriott if she’d take Irene for the evening shift. Not only did she take her, but she made it a wonderful evening, and Irene went to two different barbecues before going home to watch fireworks from her front porch.

Irene’s favorite treat, which she loves to make herself, is Rice Krispie marshmallow treats. Mare had it all set up for her.

There is nothing like having a supportive family ready to step in when needed. I don’t know how I got so blessed as to have my two daughters living within 5 minutes of both my house and Irene’s.

So here’s thanks to my family, my great grandmother, and to Irene, who, it is reported, was a real jewel to have around that night.

Irene has just left after a three-day stay with Paul and me.  Her loyal and dear buddies, Dorothy Mullins and her daughter Shannon, drove her up here from Salt Lake, as is our yearly tradition.

We play UNO, and go shopping (she gets an envelope with a couple of 20’s in it each morning), and ride the gondola up Baldy Mountain and have lunch on top.  We come back and set the table and play Boci Ball on the lawn around the house.  Friends drop in for the game, bringing more things for dinner.  (One of the friends has read our book, and said she must meet Irene.  I told Irene this, and she said, “Oh, okay.  And I’ll be sure to be cheerful.”)

The time went so fast we never did our bowling or bike riding.  We are realizing that we are getting slower.  It is getting harder for Irene to get out of the couch.  Her weight aggravates her weakening knees.  Advil is added to the list of pills she will have to take.  She is a good sport and comes along, even climbing steps she really didn’t want to climb (and wouldn’t you know we found a ramp around the other side, all too late??).

But still she is Irene.  She watches me like a hawk, making little requests almost every minute. (You check on the post office, when they close?  You check on the video store so I can get Toy Story?  You call and find out about getting my photos developed?  I can have a scrapbook to put my photos in?  I get more money tomorrow?  My knee hurts. You could paint my fingernails?  Huh? No, I want my Sun Valley jacket on, it’s not too hot for me. We could look for more postcards?  I need stamps.  You check on where I get stamps?)

And I am drained.  No energy left, trying to make her happy, working to meet every demand.  I know I don’t need to give in to her demands, but I do, out of guilt that I have so much and she can’t even read or write, and what must her life be like, without a life partner as I have, without, well, so much?

Sunday morning I make popovers for everyone.  They’re serve with perfect raspberry jam and rhubarb jam from the farmer’s market here.  It’s a huge hit and our guests are happy campers.  Shannon asks if I can furnish some extra batteries for Irene’s Walkman, which she listens to with earphones, making the five-hour trip back to Salt Lake at least a little less tedious, as Irene just sings along, rather than asking for things every minute.  I give Shannon every battery I can find, of every size.

And now I sit wondering how people with no resources for help with their special needs children or siblings manage.  How do they get through their days?  Maybe they’re smarter than I, and their special needs adult has been trained not to nag them every minute.  My Lord, I can only hope so.  It is awful to say I really need to have Irene removed from my daily life or I could really go bonkers.  And I worry about the years to come, with those knees, with all the things that can go wrong with a sixty-three year old, and upwards.  I cannot imagine her having to have a new knee and all the pain she would have to endure.  Half my friends have gone through it, and they had the intellectual maturity to understand it.  And it still damn near killed them while recuperating.

For now, the hammock by the river awaits me, and I thank God and the universe for my good fortune, for good friends, for enough money to keep my sister as healthy and happy as she can be, and, forgive me Lord, partially removed from my normal daily life so that I might live too.

I have loved hearing from so many wonderful people after they read my book. All of them have powerful stories to tell, and some have had them published. It’s always a treat for me to read about our kindred spirits who have a family member who has developmental disabilities. Mostly it makes me feel so blessed that Irene is as easy as she is (so far……)! Comparing notes is a really good thing to do!

One of my readers and new friends is one Dorothy Brandt, one of the most vibrant women of 82 that I have ever met. Dorothy lives in Alamosa, Colorado on a farm with her husband.

Dorothy paid me a visit last month. “What are you doing in Salt Lake City?” I asked her when she called.

“Oh, I’m here on a convention,” she said.

“Great. Which convention?”

“The Under-Agers,” was her reply.

“Come again?”

“Under-agers are people who volunteered to fight in World War Two and lied about their age in order to get in. We still meet once a year somewhere!”

The year was 1944. Dorothy could not stand to be left out of the war after her four older brothers enlisted. Without asking her parents’ permission, she took herself to the recruiting office and did exactly the same thing.

She was sixteen years old.

Since the war was essentially over, fortunately she saw no action. But that time in the service showed her the world in a way she never would have imagined. She made friends with Austrians and Italians, and in Heidelberg, one of the few cities we had not bombed, she met a German girl exactly her age who had worked for the enemy. Dorothy drew her out in conversation, and they became fast friends. It was there in Germany she met the man she would marry. She says, “Marrying your Army buddy can raise eyebrows at times but I highly recommend it.”

Dorothy and her husband had a daughter Dixie, who was born with an intellectual disability, and then adopted another daughter. Their work took them to many countries, and Dixie could not have handled it. They had no choice but to place her in a private school and then later in an institution. “Did we feel guilty? Of course, but we could not criticize the institution, because they had very caring staff there.”

Dixie now lives in a group home in North Carolina in Dorothy’s hometown, and is very settled and happy with her routine. Dorothy visits her often, and knows she has done the right thing by Dixie as, at age 82, you want to secure the future of your special needs children as soon as possible in the place that feels like home to them.

Dorothy will always feel guilty about Dixie, the way I feel guilty about Irene. We did the very best we could for them in each stage of their lives, but in our minds, of course, it’s never enough. There’s never enough we can do to make up for the losses our special needs children and siblings experience. It’s something we all live with.


As for institutionalizing your child or sibling in those years, for so many that was the only option available. I remember someone asking my mother, all those years ago, why Irene was kept at home instead of sent away, and what she thought of sending children to live elsewhere. She said, “I can tell you absolutely that you’re damned if you do and damned if you don’t.”

And boy was she right. Here’s a salute to Dorothy Hinson Brandt, a young girl who lied about her age to serve her country, but hasn’t lied about a thing since. It is a privilege to know her.

Well, this is a special week because a new book is coming out by a simply wonderful writer named  Eileen Garvin, from Portland Oregon.

Eileen sent me a copy of her wonderful newspaper piece about her sister who has autism.  The title of the piece was “Please Don’t Spank the Waiter,” and she asked if I would read it and see if I liked it.  I  was bowled over by its hilarity mixed with compassion and vexation and love.  I told her it would make a splendid book if she wanted to expand it, and when she was ready, I’d send it on to my great agent in New York, Laura.

Well, she replied she already HAD made it into a book-length manuscript, and would I really send it to Laura?  I promptly sent her newspaper piece to Laura and Laura read it and told her to send the whole book straight along!  She did, and now a lovely publisher in New York, called The Experiment, is bringing it out this very week!

Its new title is How to Be a Sister: A Love Story with a Twist of Autism. I just want you all to go right out and order it, because if you liked mine, you will just love Eileen’s story!  She really holds our hands, we siblings, and tells her experiences with that honesty we all love.

Congratulations, Eileen, and I hope you’ll be able to come to everyone’s town and do a reading and signing with your wonderful, delightful work, which everyone ought to read, special needs families or not.  I am just tickled pink about the whole thing.  And, as author Abigail Thomas says, boy, can Eileen write!!!

Years ago, when Irene was in her teens, an acquaintance of mine felt it her duty to keep badgering me about one thing: when, she kept asking, would we have Irene sterilized? After all, it was our duty to see to it that no more of her kind would come into the world.

I wanted to tell this woman that if anyone tried to rape Irene (as she would never initiate sex: she has autistic behaviors that would just about guarantee that), well, God help them. She would flatten them and then I’m pretty sure she’d steal their wallet as well. We never sterilized Irene, and she has done just fine with no dates and no kids.

I also wanted to tell this woman, a mother of six very handsome children, that maybe one day one of them would have one that wasn’t perfect in every way. But I held my tongue and patted her as she nattered on in her misguided, Nazi-like way.

Well, this morning she called, in tears. Her youngest daughter, already a mother of four beautiful kids, just had a baby girl. The girl has Down Syndrome.

This young woman refused to see her child, refused to nurse her, and said she needed to give this child away. Immediately. She didn’t have time in her life for someone imperfect. Her mother asked me for wisdom.

I don’t know why I was so surprised. I guess it’s all the years I’ve watched Down kids blossom and enrich their families and the community. I told this woman this, and she sounded ashamed. She partly agreed with me. She has been, I must say, a terrific grandmother to all her grandkids (fourteen at this point), and I think it hadn’t occurred to her that her daughter would simply give a child away. I wanted to remind her of her earlier attitudes toward my sister, and I wanted to ask if maybe this attitude of “no one imperfect in this family” might have been picked up from all her comments along the way.

I told her the story of the playwright Arthur Miller, whose son Danny was born with Down’s Syndrome. The moment the doctor gave him the news Mr. Miller insisted the child be sent to an institution, as he could not possibly cope with that. His poor wife, Inge Morath (this is post-Marilyn Monroe), visited little Danny every weekend, begging her husband to get to know him and see how very cute and smart he really was. But no. It wasn’t until the boy was a young man that Miller finally consented to meet him. He had been adopted into a loving home, held a job, was beloved in his community. He stood up in his coat and tie, strode across the room, and shook his father’s hand: “Hi, Dad,” he smiled. When Arthur fully comprehended what he had missed out on, he put his head in his hands and cried. “I had no idea,” he kept saying. A lot of us wonder if, by missing this part of his life, he also missed writing perhaps his greatest play of all.

The grandmother of our little newborn told her daughter that story, and it had no impact at all. She is adamant that her family is perfect and cannot handle someone who might interfere with their fast-paced and perfect lives.

And all I could do is say how sorry I was for this conflict in their family. It’s probably true that this baby needs a mom who really wants her.

But I’ve been shaking my head all day. I am working on not being too judgmental.
I guess we all do the best we can every day with what tools we have.

But this young woman is missing some important tools in her toolbox.
God help this new little soul. I don’t know what to ask God to do for her mother.

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 of us you see first.

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.