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Love: Challenges of Raising a Child with Disabilities

By Jane Bernstein — Read full transcript

This webcast is a taped video recording of Jane Bernstein’s keynote presentation at the 26th New England Regional Seminar for Children with Visual Impairments and Their Families. Bernstein is a parent and author of two books, “Loving Rachel” and “Rachel in the World”, about the life of her daughter who has developmental disabilities.

Chapters: 1 — Who I was in 1983; 2 — Rachel's Diagnosis; 3 — Grieving & Accommodation; 4 — Writing "Loving Rachel"; 5 — Writing "Rachel in the World"; 6 — Character Update: Charlotte (Rachel's sister); 7 — Some Words of Advice; 8 — Character Update: Rachel; 9 — Q & A.

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Now Playing: Chapter 1

Webcast Transcript:

CHAPTER 1: Who I was in 1983

BERNSTEIN: Thank you all. Thank you, Kristen from Hartford and Martha Delaney and Tom Miller for bringing me here. I'm really pleased to be here, and I hope what I have to say to you is interesting and relevant. Like most of you sitting here, I'm the mother of a child with a disability.

Unlike most of you, my child is no longer a little girl. She's a young woman now-- 25 years old; she's going to be 26 years old in October, which is pretty startling. So I'm going to tell you something about my journey as her parent and something about why I ended up writing two of these "Rachel" books, and to start out, I'd like to tell you something about the person I was in 1983 when I was dragging myself around with my giant belly waiting to give birth to my second daughter, Rachel.

I was married; I already had one daughter, Charlotte, who was born in 1979. I had just moved from New York City to New Jersey. It's hard for some of you to believe this, but I am, by nature, a quiet person. If somebody did a pie chart of my personality, probably it would be like, 75% introverted and 25% extroverted. In other words, by nature I'm not a natural advocate.

I was a writer of fiction in those days. I had a first novel that had just been published, and fiction was pretty much all I read and all I was interested in writing. I was and am thrilled by language they way some people are thrilled by music. I do love music too. I love great characters and probably what I love best, though, is when a really great writer takes me... opens a door and takes me into a world that's unfamiliar to me to show me what life is like some place else.

What's life like in late 17th Century Russia, or what's life like in present-day Turkey? What's family life like for the daughter of Chinese immigrants in Stockton, California in the 1950s? What was life like for a gay man in Argentina in the 1940s who loved soap operas? So this is what I wanted to do as a writer of fiction. There's something else I should tell you about myself. I knew nothing about disability. If anything, I was frightened by people with disabilities. Seeing someone with crutches gave me nightmares.

As for the kids in my school when I was young who were shunted into a room down the hall-- the Special Ed kids-- I don't think that I ever called them any names, but I never made eye contact with any of them; I never said hello to a single boy or girl. On some level, as a child, I don't think I thought of these children as human. Of course, in my defense, at this time 90% of all children with developmental disabilities were languishing in institutions. We didn't see them; we didn't have familiarity with them because they were hidden away.

I thought of myself as a person without prejudices-- with no ethnic or racial prejudices-- but this is who I was in 1983 when I was pregnant with my second daughter, Rachel. She was beautiful at birth. She had terrific Apgar scores. She seemed the picture of health, but she didn't track moving objects with her eyes, which worried my husband who was a biologist with a special interest in vision.

When she was about six weeks old, he went to a conference in Sarasota and he started to talk to one of the researchers who was presenting a poster to find out if he should be concerned that she wasn't tracking moving objects at six weeks, and she said yes. And so she was less than two months old when she was diagnosed by a neuro-opthamologist as having optic nerve hypoplasia. At that time, in that initial visit, we were told that she was blind; that she might have some light and shadow, but we shouldn't hope for more.

It wasn't until she had a CT scan-- and this was before MRIs were used for children, so CT scan was the best that could be offered to rule out the possibility that she had a tumor-- that we were told that there were associated disorders with optic nerve hypoplasia. Things like seizure and something that was called "intellectual impairment." And so during this period of time, we had to wait to find out if she would have any vision, and if so, how much-- how usable-- if she would have a seizure disorder, and if she would have this thing called "intellectual impairment," and if so, how impaired it would be. I have to say I didn't actually know what intellectual impairment was. I thought maybe, "Yeah, she won't go to college," or you know, whatever.

I didn't know what it was really. It... I didn't fully register it. It didn't make a difference, because I cried a lot. For the first weeks after Rachel's birth, the only part of the world that existed for me was the visual part: flowers, trees, art-- all that I saw and she would not took on a terrible poignancy. I tried not to cry because there was another child in my house who I really loved dearly and a husband I loved, and I wanted badly to hold onto some happiness. But there were times during this period of time when I cried so hard I thought I would invert myself.

Despite my attempts to keep some sunshine and laughter in our house, there was so much tumult in our lives at this time that later, I used to say it was as if Rachel's birth was like a hurricane that whipped through our house, blowing down our walls and ceilings, damaging Paul and Charlotte and me; the relationships we had with each other-- this lovely, fragile thing we called our family. I also find that I began to be really hungry for information and to search for information, but also for stories. Believe it or not-- this will also shock some of you-- in 1983 there was no Internet. ( laughter ) Isn't it amazing to believe that? There was not Internet, so I walked myself down to the library, and I looked for books. I looked for books about blindness and I found some, and I looked for family stories.

I wanted to read what was life like for someone who had heard a diagnosis like the one that I had heard. What was life like? And my husband downloaded all of the research papers he could find on optic nerve hypoplasia-- he found 13 and we read those-- but mainly, I realized I was looking for those family stories. I wanted to know what life was like some place else, and I couldn't find them. Of course, now I can say at that time, in 1983, there were a couple of books... good books that were out there, but I lived in a town, it was a small library, and the books that I found-- the family stories I found-- were really saccharin.

There was no messiness in them the way there was in my own house. If the early days after a dire diagnosis were mentioned in these books, those early days passed in a blur, and in the end, the beloved baby was an angel; a gift from God brought to Earth to teach the parents certain lessons. I was still crying. If there was a lesson, it was learning that I miraculously stayed intact after all that crying, and also that on some days, I laughed and then I cried.


CHAPTER 2: Rachel's Diagnosis

BERNSTEIN: So the waiting was very hard on us. This is probably not a new story to anyone sitting here. And because she was blind, she didn't respond readily to us; she didn't look up to me as Charlotte had or break out in a body-wiggling smile. But here's the thing: she was actually the same child before and after we took her to the physicians and heard these dire words. She didn't change; we did.

If she had been able to give you here bio from this period of time and describe her earliest days, she might have said something like, "There I was, "thrust into the world and into the arms of my adoring parents. "I nursed lustfully and often, I slept soundly, I owned hundreds "of toys that whistled and squeaked-- "rough toys, smooth toys, soft and hard ones-- "everyone loved me." Rachel hadn't been devastated by the diagnosis. That doctors words didn't hurt or change her. What changed was our perception of her. So at this point, in a way, the problems were ours, not hers. I didn't know that at the time, of course.

I couldn't have said that we were the ones who had to struggle, first to accept the diagnosis, and second, to wait for indications of just who she would be. And for me-- for us-- it took a long time. Probably for me, the waiting was worse. The blindness I came to terms with much, much more quickly, because I felt like, "Well, we'll do this; we'll do this; this she can do; this she can do," but not knowing the other pieces-- the intellectual impairment-- that was much harder. How intellectually impaired? What did it mean? And that I couldn't picture. But at some point, for all of this, we did accommodate to Rachel.

And this is a little quote from... actually from "Rachel in the World," "Despite all the tears and gut-wrenching comparisons "with children her age, we had begun to accommodate to her. "Without a word of discussion, we'd begun to accept "that there would be no miracles-- medical or otherwise. "What I had feared most had come to pass. "She was intellectually impaired, "though I would not know the extent or full meaning of that "for years, and she did have a seizure disorder. "She was also cheerful and responsive, "and continued to make better use of her vision "than anyone had expected." If you ask me now how that... when that happened, I can only say that it happened over time without us being aware of it. If you ask me why it happened, I could say, "Well, she was really beautiful. "She had ringlets and creamy skin and long eyelashes "and Cupid's lips.

She was the kind of baby strangers wanted to hold." I could say that I accommodated after I mourned the death of the "normal" child that she would never be, for isn't it the case that even if we think we have absolutely no hidden agenda for our children and no blueprint whatsoever for their lives, when a less-than-perfect child is born, you find out how wrong you were? We all have dreams. Sometimes they're very simple-- you expect your child to be loved; you expect your child will have friends; you expect your child to go to college or have a life that in some way resembles yours.

Little by little, as some of those dreams were put aside, I started to find new ones, and that, it turns out, is the start of accommodation. I could say, also, that I was helped by the caregivers who helped take care of Rachel. Young women-- and they were all young women-- who were delighted by her. They nurtured her and played with her without a speck of sadness. One of them was a young woman-- she was a teenager at the time-- named Lori, and she came into our house when Rachel was still an infant.

We lost contact with her when we moved from New Jersey to Pittsburgh, and I looked for her and I thought about her all the time. I never could find her, and then just a short time ago, after 18 years of not hearing from her, I got an email and the subject line said, "My life was blessed by loving Rachel." And the little message said, "My youngest daughter is adopted, "and during the adoption process, "I thought of Rachel often. "They asked me if I was sure I could love a child "I did not give birth to, and without hesitation I said yes. Thank you for sharing your baby with me."


CHAPTER 3: Grieving & Accommodation

BERNSTEIN: Having someone like Lori in my life was extraordinary. She didn't tell me what to feel; she didn't stand in judgment. Here was this woman who simply enjoyed taking care of my daughter, and she did it as I said, without sadness and judgment, and there were others. And so these things helped us accommodate to Rachel-- not quickly, and certainly not in those neat, little stages everyone seems to love. It was nothing at all like that. There were no neat, little stages.

People love the notion that grieving is neat. So often, I've read or heard people talk about grief over a less-than-perfect child being similar to the stages Elizabeth Kübler-Ross sets out in her classic book on death and dying. That parents, like people facing death, go through denial and isolation, anger, bargaining, depression, before acceptance. We didn't do it this way. I mean, we did all those things, but I personally was all over the place. I could do denial, isolation, anger, and bargaining in one afternoon. ( laughter ) In one day, I could absolutely suddenly have a moment of refusing to believe the diagnosis-- she wasn't blind-- and then in the afternoon, become absolutely obsessed with it and be unable to think of anything else.

I think it's also more accurate to say that in a family, often each family member grieves in a different way, and this includes siblings, and further, that each person, while grieving, often needs something specific-- comfort or distraction-- and that often this something is just what the other person is unable to give. For example, a baby is diagnosed with optic nerve hypoplasia, the wife needs to cry; the husband needs to get away from all thoughts of his baby's diagnosis. Or one partner wants to talk about what's happened-- to talk, and talk; to analyze and research, and the other cannot bear to listen.

Some people say it's because men and women are raised to behave in different ways; that it's okay for women to cry while men are trained to keep a stiff upper lip and be manly and protect the family. I think there are also lots of cultural differences-- different ethnic groups have different attitudes towards disability and different attitudes towards mourning. Take, for instance, in my family, the difference between an Irish wake and Jewish Shiva, and you'll have a sense of how different the response to mourning... ( laughter ) oh, laughter, that's interesting. So there's a lot of... I think there's a tremendous amount of variation. I think, in addition, in grieving, like in literature, there's a text and a subtext.

There's how we overtly act-- we cry when we hear bad news-- and how we act despite ourselves: we fight with our spouse and we yell at our son about his homework, you know? In the Rachel book, I wrote, "We learn to love by being loved, "and later by falling in love. "We learn to raise children and live with another person "in much the same way. "Nothing teaches us about grief until we grieve, and then it's too late." I believe our styles of mourning are as indelible as our fingerprints, and that we cannot change the way we grieve.

I also believe that we have to go through with it, and distraught family members and well-meaning professionals should not try to jolly grieving parents out of any stage with the illogic of statements that begin, you know, "Think how blessed your lives are," you've all heard this, right? "Things could be worse; take one day at a time." I particularly hated, "Take one day at a time." It drove me crazy. ( laughter ) I couldn't... I was not psychologically capable of taking one day at a time. It's just not the way my brain works. I used to get crazy.

And then there's this awful American obsession with closure, which I think is really brought on by like, TV talk shows where you have this drama that's introduced, and played out, and 20 minutes later, it's resolved-- it's closure; 20 minutes! And it's uncomfortable for people if you don't have closure, and so lots of people want to assume that you're going through neat, predictable stages that they understand, and then you have closure. It doesn't happen that way. I think, as somebody...the mother of a 25-year-old-- in my experience, unique, as each of yours is-- but I would still say your grief is going to abate in time.

Your life will settle down. You will accommodate. And after you do-- whenever you do-- you're going to find that you still love your child and you're going to find that you still worry, but worrying comes with the territory of loving anybody. It's not just worrying about your kid with a disability. You worry about all your kids; you worry about your family members-- worry is there forever, and love is there forever. But at some point, you will accommodate. And for those of you who I've talked to who are very early on, it will happen. It will happen.


CHAPTER 4: Writing "Loving Rachel"

BERNSTEIN: At some point in my life, by the time Rachel was three, she began to compete with other people and other things in my life. And the reason I would say in that case it took-- I don't know, it was really earlier than three; I was having some good times before then-- but she had infantile spasms and was very, very sick for a period of time, so we'd kind of gone on an upward trajectory, really pretty doing well as a family, and then there was a time she was really sick, and waiting for her to come back and figuring out how that was going to be, so it took a little longer before I could say that my life was pretty balanced.

One of the things I was is I started off by saying in the beginning of this is that I was a writer of fiction-- not interested in non-fiction. There was really, in 1983, no like, "memoire craze." and I was not interested... couldn't imagine writing a memoire anyhow. So one of the things I wanted to do when my life was slightly more in balance was to go back to writing, and so I went... abandoned what I'd been working on and I started to write this book, and it had some boring plot, and it had a subplot about a family with a child who is less than perfect.

And my agent nagged me to give her a piece, and I gave her a piece, and she said, "The main plot of this book is really boring, "but the subplot's really interesting. Would you consider writing this as non-fiction?" And I said, "No. "What? I don't know how to do that." And eventually, I did, for reasons I'll explain in a couple minutes, and I did because I wanted to write what life was like for someone else. I wanted to take somebody else in the front door of my house and say, "This is what life is like the morning after "you wake up and hear that your child is blind. "This is what life is like a month later. This is what life is like six months later."

I also wanted to write... I wanted any reader to read it, but I also imagined the person I was-- going through a library, frantically going through, looking for books that would give me some reflection of what my life was like, and so I wrote it for that person I had never met. The book begins when I'm pregnant, and 15 of the 18 chapters take place in the first year, and it ends... the last little piece of the book is really ages one to four, when she's a toddler. It does chronicle Rachel's medical and developmental ups and downs, the infantile spasms and seizures, the evidence of vision, but it is overwhelmingly our story... family story.

Something, believe it or not, that I failed to see until a couple of years ago. I didn't choose the name "Loving Rachel" or the subtitle "A Family's Journey from Grief," which I think is not on the new edition. I hated the title and I hated the subtitle. We made many family jokes about "Journey From Grief." Again, it was only when I started writing the second book that I started thinking, "Yeah, actually this book was about loving Rachel-- what a great title." And in fact, it was about a journey from grief-- from grief to accommodation. That's what that was about. I didn't see it. It took me many, many, many, many years to actually get the perspective of seeing it.

Well, so shortly after that book was published, I gave a talk in the Livingston Public Library in Livingston, New Jersey, and when I finished the talk, I did, you know, a little Q & A and a woman came over... raised her hand and said, "Will you write another book about Rachel?" And I said, "No; absolutely not, under no circumstances." And she... she had introduced herself as a mother of a 14-year-old with developmental disabilities. It's like, "I told the story. I don't need to write about it anymore." I thought I had nothing more to say, because at that point after the book was about, I thought, "Oh, yeah. "I wrote the story about the fact that I heard "these awful words--the worst thing I could possibly imagine "as a person I've described as with no experience with disability whatsoever." The worst thing... and I loved her just as she was.

That seemed to me the story. I had not place to go from there. As the mother of a 25-year-old, I can see that the story I told was about... again, was about us. It was about the beginning... her beginning and ours. It was a tiny speck in her life-- one year of 25-- and that I hadn't really begun to tell the story of what happened as I gradually opened my arms. Because if you haven't done it yet, one day you're going to open your arms and you're going to let go of your child. And then one day, you're going to open your front door and you're going to let your child out of the house-- and I mean this also in a metaphorical way.

Time is going to pass; your tears will have long dried by then. It's like, "What tears? I cried that hard?" Because you're going to be really busy helping your child find a place in the world. For many of us, it does mean rolling up our sleeves and getting ready to fight, because when you open your front door, you're asking a lot of people to look after your child. You're asking people to be respectful, to make sure that your child's needs are met, to enjoy her, to work with her, to find her heart and soul.


CHAPTER 5: Writing "Rachel in the World"

BERNSTEIN: At eight, she was still really adorable. She's still adorable. I have to say, she's 25, she's cute. She was really adorable, but she... and she was very... she was just starting... hadn't started growth hormones, so she was really cute. Curly hair, gregarious, talked to stone lawn ornaments-- she'd talk to anybody, anything. ( laughter ) She did. She did. Her vision wasn't that good! ( laughter )

I could stand up here and give you a long list of her deficits and disabilities. I could give them to you in lay terms, I could give them to you in medical terms. To the world she had mental retardation. That's basically how the world saw her. Now, when she was young and I was busy letting go of my dreams-- and it was like, "Fine, she won't go to college;" it was like, "Fine, she won't go to high school." Just letting go of all of these things. The one thing that I really wanted-- I wanted her to have language. I'm so hyper verbal, even though I'm quiet. I really, really wanted her to have language. "Oh, please, please, please, please let her have language." And she has language.

She doesn't stop-- but she has extreme linguistic dysfunction, and her language is abundant but disordered. Sometimes there's stuff in there that's meaningful, but lots of cocktail party chatter and lots of... this is her mode; this is her means to make herself known, and it goes on. It's like I asked too hard for her to have language. ( laughter ) So she's challenging. For me, as her parent and advocate, I really wanted to know for a long period of time who she was, how I could unlock her hidden abilities, to know on some deep way what made her happy. Not only what she liked to play with-- her play skills were very limited-- but was she happy with a crowd of people?

Was she happy in a quiet room? Was she happy with music or was she happy with silence? I mean, any of those kinds of things. To really know her. How could she learn? How could she best learn, by what modality? I mean, so I was very, very busy in that period of time. The tears gone, busy trying to figure out who she was as a human being. The wider my door was opened, the older she got, the more questions and issues were raised. So that book that I was never going to write? I started to feel like, "Well, I have a lot of things to say." "Loving Rachel," as I said, was our story, it was a family story about "Loving Rachel-- Our Journey from Grief."

"Rachel In The World" is her story. Actually, the way it's shaped it's a series of linked stories in a way, because chronologically it covers a long period of time-- it starts when she's eight and ends when she's 22. And each of these stories circles around an issue, because the wider you open your door, the more your child is outside your arms, the more issues are raised. I'll give you an example of one really early issue: Rachel loved to swim. She started doing hydrotherapy at her school, and wow, the swimming was so great.

She really loved it, she was good at it, she could swim with her siblings and kids. And she started to have seizure-like activity when she would come out of the pool, and I was really, really adamant that she keep swimming. I wanted to solve the seizure problem, but I didn't want to take her out of the pool. And so this occasioned my thinking, first of all, why was I so adamant that she go swimming given this, and also it made me think a lot about her, and this is just like a couple sentences to give you a sense of this chapter. "If Rachel was never again in the water, "she might never asked to swim; she would never tell me "she missed swimming. "Could I say then that I was not depriving her of anything; "that she did not really care, or would this be like saying that pleasure is only what one is able to recall and describe?"

So when she was younger, those were the kinds of questions. Later on in the book and in her life, the questions really were much broader things about what are her rights and what are the rights of people in the world? What can I expect of not just of Social Services, but what can I expect of strangers-- especially with her non-stop talking? This raised many, many social issues, because you can say, "Yeah, there should be no barriers, "there should be Braille, there should be signing at all events," and you can say all kinds of things that absolutely should be, but what about a kid who talks non-stop? I mean, what can you ask of people you don't know?

So it's lots of issues that were raised. But I will say don't be afraid. Your child will show you the way. That's, I think, really true. Earlier on, a couple minutes ago, I said that I really hated when people suggested that Rachel could teach me something. I was really offended by that notion, that she was brought to me so I could teach her something... I mean, she could teach me something. I had a lot to learn, but I didn't think that she was put on Earth to teach me. I didn't think that was her role. I really rebelled against that. But now that she's 25, I've been... I'm able, actually, to see that in fact, as her mother, I really have learned a lot, so it takes it out of her. It's not her job to teach me, but in fact, in raising her, I've learned a lot.

Before Rachel, my own sense of what it meant to have a meaningful life-- a good life-- was really very narrow. I thought in a lot of ways that a good life could be measured by one's accomplishments. I didn't see the vast range of what can be defined as a "good life," and that a parent's job is helping to understand your child, to make her as independent as possible, and over her years in school, to help her find that good life. Here's something else I learned being Rachel's mother. I'd been very politically active as a college student, but I put that aside a long time ago and had kind of forgotten... I mean, I think my values were the same, but I certainly wasn't an activist.

When Rachel came along, I began to think a lot about what it means to live in a democracy, and how part of our responsibility as a citizen is to take care of those of us who are less able, so it's reminded me of my responsibility and has kept me going beyond my needs and Rachel's to be an advocate for children and adults with all kinds of disabilities. So "Rachel In The World," if I were to describe it I would say, "This is what life is like for a teenager "with developmental disabilities. "This is what life is like for a young adult who is dying "to get out her mother's house and just is in a state of constant rage."


CHAPTER 6: Character Update: Charlotte (Rachel's sister)

BERNSTEIN: I won't try and tell you everything that's happened in Rachel's life and mine, but when you're a member of memoires, which I guess is what I've become, you open your life to readers, and readers are justified in asking where the "characters" are, so I will give you a little update. Just to sort of get this over, I did end up getting divorced-- it was not because of Rachel-- and her father, my former husband, died in 2004.

My older daughter who was born in 1979, who I referenced very briefly is 29 years old. She is an extraordinary human being. She'd be really angry with me for saying that. I worked really hard to make her feel that she was as important as her sister and that her problems meant as much. I have to say that it was very easy for me to do that. I found her really engaging, so I love being with her. So that part wasn't hard, but about two years ago, she told me something that really broke my heart that was really interesting.

She told me that when she was about eight years old, so Rachel probably was around four, that she wanted a denim skirt, and that she knew if she asked me for the denim skirt, I would say yes, but she didn't want to ask me because she felt like I had too much on my mind. You know, too much was going on. And that broke my heart. It reminded me that even when you give the time to other children and your siblings have their wait and their little splinters in their fingers, you know, you kiss and fuss over as much as you fuss over the major issues in your other child's life, but even then, it's tough for them.

There's a shadow, and it's tough. I never asked her to look after Rachel except when I wanted to go out running, but I never really asked her in a major way. I never said to her, "When I die, Rachel will be your responsibility," even though at this moment in time, we have almost no extended family and she has not father, so that's the reality. I never needed to say it. I never said it, I never wanted to say it, and she has, in her own way, taken that on-- not in an unhealthy way, I would say. So I left her as free as possible to give her a lot of freedom. She ended up... she went to film school, she ended up making a feature-length documentary about her sister's transitional year from high school to college, which is going out to film festivals and it's finished. It's incredible.

But during this time when she moved back into my house and was shooting, I kept saying, "Oh, you're an amazing sister." And it was like, "No," and like, "this is all about me," you know, "I'm a narcissist and I don't care at all." But she did become a major advocate for her sister, and now, I mean, it's really actually very touching. She lives in Brooklyn. She'll call me up and say, "Hey, mom, I want to spend "a couple days with Rachel. Can you fly her out?"

Or she was back in Pittsburgh, it was Spring Carnival at Carnegie Mellon, and she said, "I'm going to pick Rachel up and take her to see 'The New Pornographers,'" you know? So she'll take her out to a rock concert. She's just great, and I don't care if she doesn't like that I'm saying it. She also volunteers for an organization called Sprout in New York, and takes adults with developmental disabilities out on the town. She took them to Chelsea... to galleries in Chelsea a couple of weeks ago. She said it was really fun. So she's... somehow, she's been wounded, I will say that, but I think she's working with those wounds.


CHAPTER 7: Some Words of Advice

BERNSTEIN: And Rachel... who is Rachel? I'm going to tell you who Rachel is in just a second, but I feel like I should probably like, sum up some points. I don't know that I have said anything that's worthwhile. I will say if I could offer anybody advice, I would say please don't let anyone rush you through your grief. Let it run its course. I do believe that. I think... I believe... I shouldn't say "think." I believe your child will show you the way; that the advocacy piece is going to come pretty naturally.

Your child will show you what he or she needs, and you'll figure that out along with him or her. I will say the third thing that I learned through all those years of transition and the things that most people here can't possibly conceive of: make your child as independent as possible. For those of you who have eight month old baby, these are tiny, little babies, it seems impossible-- make your child as independent as possible. Put that in big banner letters wherever you live in the room: "Make your child as independent as possible." Sometimes, that means get your child to make her needs known; find out whether your child likes to be in a quiet room or a noisy room; get him to tie his own shoes if he can possibly do it.

The example I just gave recently was Rachel dressing. I mean, she has motor problems. Watching her struggle to get a turtleneck on-- right side forward; outside out, not inside out; her head through the head hole and not through the arm holes-- whew! It's exhausting, and she is rather an oppositional human being, and so it's loud and exhausting, but I have to say, now that she'd 25, I'm so glad that I've let those fights happen, and I let her be as independent as possible, because the more independent your child is, the more freedom and dignity your child will have, the more your child will be able to make choices-- whatever her ability to make choices may be.

It makes all the world... even if you can't imagine it now, work toward it, fight toward it, do everything you can toward it. Make your child as independent as possible. It is the single most important thing. People say to you, "Oh, one day as a parent you're going to be gone." That's true, but I think you need to start thinking about your child's life when you open the door and start to let your child out.

From that moment that you're asking other people-- the bus drivers and the teachers and the occupational therapists, physical therapists, speech and language pathologists, all these people-- as soon as you're asking them, your child is starting to have a life apart from you, and some day sooner than you imagine, sooner than adulthood, you have to really plan that you're not going to be there protecting your kid with you arms around them all the time.

Make your child as independent as possible. I guess the fourth thing: you are not a beggar. We live in a democracy, and it is the role of the democracy to take care of those of us who are less able. We live in a democracy; you are not a beggar. Pay your taxes and ask for you services.


CHAPTER 8: Character Update: Rachel

BERNSTEIN: Okay, so I'm going to tell you where Rachel is now, and then I'd be very happy to take questions. This is... I'm going to read this. People hate readings, but this is only 820 words, so it's not long. This was a little "Lives" piece in the "New York Times," and it ran in October 2007, so not so long ago. It's called "Independent Means." I didn't name it. "My daughter Rachel, who is developmentally disabled, "lives in a community-living arrangement with two... " I'm going to start this again.

"My daughter Rachel, who is developmentally disabled, "lives in a community-living arrangement with two roommates "and 24-hour staff. "It's only a half-hour from my house in Pittsburgh, "so I stop by about once a week. "Rachel calls me a dozen times a night, but is unenthusiastic "about my visits. "My feelings aren't hurt. "Even though two years have passed since her move, "it's still thrilling to see her happy and relaxed "in her spacious town house apartment, "and her roommate, Le Ann, loves to see me.

"One May afternoon, I arrived just as the ladies "were coming home from work. "Le Ann, who does housekeeping for one of the downtown hotels "wears a navy blue uniform with her name tag "pinned perfectly straight. "Even before I ask how many rooms she cleaned that day, "she holds up seven fingers, flashing "those digits with pride. "'Wow,' I say, and she wraps her arms around me "and squeezes hard. "I'm still in her embrace when Lisa walks past, "swinging her Exceptional-Adventures lunch box "and then Rachel in a graying 2004 Mitzvah Day "t-shirt and shorts. "'Hi ma,' she says. "It doesn't matter if a day or a month has passed, "she always greets me in the same matter-of-fact way.

"While Rachel's emptying her backpack, Le Ann takes me "into her bedroom to show me the card her boyfriend gave her. "The room is pleasantly crammed with pillows, shelves of CDs "and videotapes, Pittsburgh Stealers memorabilia, "dolls that cry when their bellies are pressed, "and smartly-outfitted teddy bears. "Inside the greeting card, below the store-bought sentiments, "her boyfriend has written, in shaky block print, "'I care for you a lot.' "Le Ann says he's nice to her. "In the kitchen, Rachel is calling her sister "or someone from work-- the first of scores of phone calls "she'll make that night. "When I ask Le Ann how Rachel has been, she says, "with a hint of delight, 'She's been torturing me.' ( laughter ) "It's what Rachel always says of Le Ann-- "'She's torturing me!'

"Sometimes one tortures the other by collecting "too many cards during an Uno game. "Sometimes torture happens when the name calling game "has gathered steam and they've passed from 'dork' "and 'turkey head' and 'walrus nose' to 'monkey butt.' "As far as I can tell, torture ensues any time "the word 'butt' is uttered. "Alas, Rachel wakes at dawn and barges into people's rooms, "then she really does torture them. "I think she tortures her boyfriend Peter, too. "Rachel and Peter do packaging and assembly work "at a supported work site. "They used to sit together at lunch, "but they're no longer allowed. "'Too much hugging and kissing,' Rachel said. ( laughter ) "Peter buys Rachel gifts.

"Rachel never reciprocates unless her roommates "or staff intervenes. "She's a torturer, my daughter. "A heartbreaker too. "I wish she were kind, but she's never seemed capable of empathy. "Not that any of us have given it up. "Sometimes I think she has it in her. "Since moving here, she's shown herself capable of many things "that once seemed out of her grasp-- "like dialing a phone number, something I could never "teach her to do. "Often, it's hard to know what Rachel thinks or comprehends "because woven through her abundant conversation "are other people's expressions, their gripes, and their desires. "Since adolescence, though, she's been very clear "about wanting to move out of my house.

"When asked where she wanted to live, she'd point to me and say, "'Far away from her.' ( laughter ) "'I hate this house,' she often screamed. "In her 2002 yearbook, students were asked to name "their fondest wish. "One classmate wished she could walk on her own. "A second wished he could be a famous rap artist. "A third wanted to be a millionaire. "Rachel wished for, 'an apartment all my own.' "For so long, it seemed she'd never get off the waiting list "for a residential placement, and her wish "would never come true. "I began to fear that my once-cheerful daughter "would end up miserable and out of control, unable to find "a place where she could fit, and that "caring for her would break me.

"The day she moved into this apartment, "everything began to change. "Rachel's room was also nice. "Her sister and I brought her beautiful sheets and pillows. "On moving day, we hung posters, set out family photos, "and assembled the red computer desk where she now sits, "playing computer solitaire. "I nose through the closet and ask if there's "anything she needs. "'Batteries,' she says, "I get her to show me the album from the Florida vacation "the apartment took last fall, never tired of seeing "pictures of my daughter and her roommates "sipping fancy drinks and dancing. "Before I go, I offer to take her to dinner. "As always, she turns me down. "She'd rather eat here with her friends.

"Le Ann hears Rachel walk me to the door "and races to hug me goodbye. "'I love you,' she murmurs. "'Love you too,' I say, then open my arms wide and wait "for Rachel to fall in them. "'Love you, Rachel,' I prompt in a teasing voice. "'Love you, ma,' she says at last. "The yearning to feel that she does love me wells up "the way it so often did before she moved-- "when it seemed as if I meant nothing to her. "I run my fingers through her curls and remind myself "that it's enough. "It's more than enough to see her in this life "that makes sense. "This is what happy looks like. This is her life." Thank you.



BERNSTEIN: Thank you so much. I'd be happy to answer any questions.

WOMAN: When interventionists came to your home when she was little, what would you suggest would be the best way to behave with a parent that has just gotten the news-- generally speaking-- without a terrible outcome? Would you just focus on the child and play and be happy with them, or?

BERNSTEIN: I actually remember the first person who came from Blind and Vision Services in New Jersey, and it was really probably 12 hours after we heard the words, because I instantly called. And what I remember from her, again, is that I remember that she was delighted by my daughter. She just thought she was really a nice baby, and she made a fuss over her. And that was meaningful. Again, in retrospect, I realize that those people enjoying her made me feel she was valued, I think, in some way. And she asked for nothing of me, and I think for me, I didn't... personally, everybody's different. I think some people respond in different ways. I didn't want to be jollied. I wanted to be... I think I needed some space, and she gave me that space, and that was good. Thanks.


WOMAN: Were you ever in a parent's support group?


WOMAN: Was it helpful?

BERNSTEIN: Well, yes, it was incredible. I was extremely resistant. She was in... Rachel was in, before it was called Early Intervention, she was in Infant Stim, you know, in New Jersey, part of the outpatient part of the hospital. And there was a wonderful social worker, and every week I'd take her to Infant Stim, and she would ask if I wanted to be in the support group, and I'd say, "Thank you, no."

And then, I don't know, at some point, I did. And for that period of time, until I left New Jersey-- no, I would say until she was three-- that group was very, very, very important to me, just as a place where I could be myself. Because I may talk about crying a lot, but I'm kind of buttoned down. I cried a lot... I didn't cry a lot, you know, in public. So the group was great. I didn't... I was unincorporated thereafter.


MAN: I didn't fully understand the complete nature of her visual impairment, but did she learn how to use Braille?

BERNSTEIN: No, she is... she's legally blind. She makes extremely good use of the vision that she has. She has probably 50% of each retina but she has some foveal vision, and I was actually just telling Martha it's interesting, I have to talk to staff when they come into her house to remind them that she's low vision and what light situations are better for her, and you know, outside terrain, and most kinds of stairs and most things. She does... she does quite well.


WOMAN: Is the transition film available online?

BERNSTEIN: Not yet. It isn't yet. It's out, but she's looking for a distributor, so any... year. ( laughter ) I don't know when. I mean, I hope soon. It's quite wonderful.

WOMAN: Do you have a title for it?

BERNSTEIN: The movie is called "Rachel Is." I have cards, so I have little... if you come over to me afterwards, I'll give you a little postcard which is an ad for the film. It's... she's shown it like, for instance, in Pittsburgh she's shown it for fundraising, and so it's had a number of screenings places, and she's given out a lot of DVDs, but she is trying to get a distributor for it.


WOMAN: I'm wondering if you can talk for a minute or two about just kind of boundaries between... sounds like you worked full time, or... no?

BERNSTEIN: I was a writer-- just writing, I wasn't teaching-- when Rachel was born, and the habit of writing and the habit of trying to find a place in time for myself were really reinforced ahead of time, and that, I think, ended up being extraordinarily important to me. I did then start teaching part-time, and then eventually, you know, I did a tenure-track thing. But I found for me, of course, not thinking about her in that quiet time was harder, but I really, really needed that space just to try and be separate. And the way I managed it... I mean for a period of time, I really was rigid to a point of probably being really unpleasant.

I mean, I just marked out these times as times I was unavailable-- unavailable for doctors appointments, for appointments with anybody, I never had lunch. I think this year was the first year I ever had lunch with a friend. So there were just lots of things that I didn't do to have it, but I think in retrospect, I'm really glad I did. I think I held on to my sanity, sort of. As much as I had before.

Yes? Yes?

WOMAN: Did you other daughter ever-- I mean, aside from the denim skirt-- did she ever talk about feeling slighted or, you know, when you talk about the past with her, does she feel like she had an equal place in your home?

BERNSTEIN: Yes. So what was difficult was living in a house where parents... it was, you know, erratic. The emotional climate in the house was erratic, because there were days in which we were like a really fun, functional family, and there were days in which we were just, you know, there was one-- oh, especially during the heavy duty seizure years of before we were carrying around the rectal valium-- I mean, you know, there was a lot of drama. Just drama over her sibling. So I think those things still affected her.

WOMAN: But now is it... as an adult, there's not the resentment; there's not the


WOMAN: Just sometimes I feel like no matter how hard you try, we're going to... like, you can't not end up in

BERNSTEIN: Well, that's why I said the denim skirt was a reminder that it's not as if she didn't... she did... of course she suffered, but I know... but I think she was... and of course, she's almost 30 now, so it's much more measured than her response would have been as an adolescent. But I think she knew that she was adored, and more important, she knew that her problems-- her scratches and scrapes and problems with friends-- really mattered. And again, I don't say this because I was great parent. I wasn't a great parent. I say it because I thought... I mean, she was, like my space alone, she was just a place I liked to go, and I worked pretty hard to give her the time I wanted to.

Thank you all. You've been a very tolerant audience.