RETINOBLASTOMA
SUPPORT NEWS

BOOK REVIEW

In this issue we will feature two wonderful books, one for parents and one for little ones.
We could not decide between the two so we thought it best to review them both.

~ The Happiest Toddler on the Block~ by Harvey Karp, M.D.

The first book is entitled The Happiest Toddler on the Block by Harvey Karp, M.D. Someone we know described her child as "someone I live with, a 'knee-high Neanderthal. He has a strong will, is developing fine motor skills, can throw and hit with some accuracy, and is learning to use words instead of just grunting his commands'". In Harvey Karp's four overlapping phases of Prehistoric Parenting, he notes with loose interpretation "once you begin to see your child in this evolutionary light, your daily struggles and frustrations will make a lot more sense." And it really does make a lot more sense.

This book is packed with tons of practical advice. Learn about temperament and how to work with what you have, both your toddler's and your own. Learn the best way to communicate with your toddler, using the "fast-food rules," " toddler-ese," praise and side-door messages. Find out how "Time-In" and predictable routines make toddlers feel safe. Learn how to set limits that your toddler will respect and to deal with potential "boulders" like tantrums, bedtime, toilet teaching, fear, and separation anxiety. With so many helpful suggestions and easily applicable advice, this is an extremely approachable and down to earth book that speaks to the heart of parenting. Dr. Karp also wrote The Happiest Baby on the Block which we also highly recommend. Both books are available at your local bookstore for $14 or at the local library.

~ Mother, Mother, I Want Another~
by Maria Polushkin Robbins

Mother, Mother, I Want Another by Maria Polushkin Robbins is a lovely book that begins with Mrs. Mouse carrying out the bedtime routine with her baby mouse -- you know the drill: pajamas on, teeth brushed, story read, and then bedtime kiss. But as Mrs. Mouse starts to leave, baby mouse cries out, "I want another, Mother." This most hilarious story takes off from there. Thinking that her beloved baby mouse wants "another mother" she sets out to find other mothers to help put her baby to bed. She tries a duck, a frog, a pig, and even a donkey, but to no avail. After each mother tries her best to put baby mouse to bed, he cries, "Mother, Mother, I want another!" Of course, we know the little guy just wants another kiss from his own mom, but Mrs. Mouse doesn't catch on until the very end, when baby mouse has had enough and shouts, "No More Mothers! I want another Kiss!"

All ends more than well, of course, and you feel drenched in all this mother-baby love. The illustrations are lovely and add even more to this charming and heartwarming book. This book is available in hardcover only for $14.95 at your local bookstore or at the local library.

Dear Tracie,

First, let me say that I think what you are going through is normal. Some of her separation anxiety comes with her age. Children, from my experience, travel in and out of separation anxiety for several years until they are comfortable and able to trust that they are safe being away from home as well as away from a parent. My advice is to take it very slowly. You can begin, for example, going out visiting together. Walk down the street and visit the neighbor's dog. Talk with people at the store and introduce your daughter. Go to the park and talk with other parents and their children. This is a first step in learning that going outside and being with others is safe and often fun. After being in a medical setting for most of her first months of life, your daughter has learned that many people may do things to you that you do not like. Often your child did not know what to expect when a nurse or physician walked into the room, perhaps to just say "hello." Nothing felt safe except being with you, probably attached to you. It takes time to establish equilibrium and know that the world is a safe place and that you will always return. Developmentally it takes all children some time to learn this, but for children exposed to medically traumatic situations, it often takes a long time. Have patience and trust that the separation will become easier with time and experience. Speak with other parents about how they handle this problem, as it is an issue in every household at one time or another. Best of luck and keep trying as it will get better.

My experience has been that with my son, separation after his treatment was very hard at first, but in just a few months it got easier. He was a bit older when we finished with his chemo, but he bounced back quickly. I made a picture book of every family member. I put contact paper over the photos so they could all be together or he could carry one photo at a time. In some of the photos I had just the two of us together, in others I had him with his brother and in some I had his dad and grandparents. I mixed and matched the photos. He would choose which photo he wanted at a particular time. For a time he carried the one of the two of us all the time. If we went to the store together and I was checking out and he was in the cart, before he would begin crying because I was loading the groceries, I would point out the photo he was holding and talk about the two of us in the photo. We gradually separated into separate rooms with his special photo and eventually he could go and visit his grandparents for short periods of time with his photos in hand. By the time he was two and ½ years old, his anxiety had decreased dramatically. I will admit that it took a lot of patience and talking him through situations on my part, but it did work. I always explained everything that was going to happen, even fun stuff before it happened. That way he learned that he could pretty much know what to expect. If I did not know what was going to happen, I told him that and also that he would be okay no matter what. My reassurance was very helpful to him. I know all children have some separation anxiety as he is my second child and I had been through it before, of course, not with the added problem of retinoblastoma. However, I was not surprised when my second son developed this problem earlier and with more ferocity than his brother, as I expected it. Hang in there.

A long time ago, a children's singer by the name of Hap Palmer wrote a song called "My Mommy Comes Back." My daughter is now 20 years old and I still know the words. I bought the video, the tape and now have it on CD. I played it over and over and it became our theme song. The lyrics say "My mommy comes back, she always comes back, my mommy comes back to get me. My mommy comes back, my mommy comes back, she never would forget me." I sang this song or put on the video every time we were in the car, going anywhere or doing anything. It really helped develop a sense that I would always come back. I always had a specific time when I would return and I would leave something of mine with my daughter. I would leave either a scarf, my watch or even a handkerchief with my perfume on it for her to hold for me. It reinforced the idea that indeed I was coming back. I am sure you can still find this video, cassette and song in any children's section of a book or music store. It really helped. Good luck.

Many mothers I know leave their children by sneaking away when the children are busy. I think this is a bad idea and I always tell my children when I am leaving. I do not prolong saying goodbye. I tell them in the car that I am taking them to be with their babysitter while I go to work and that I will be back for them. I kiss them goodbye and even if they cry, I leave them in the hands of a babysitter I totally trust. I do not hang around to watch what happens because they know I am still there and it prolongs their crying. Often my younger daughter cries for a long time, but eventually she quiets down and gets comfortable in the babysitter's lap. I always smile as I am leaving to show that it is okay. I may cry myself in the car because I feel sad when they cry or guilty because I work, but I never show anything but a smiling face and the true trust I have in my babysitter. This really helps with separation anxiety. I hope your daughter is better very soon. Try not to worry too much as this happens to all children.

I have just read the Spring 2004 issue of this newsletter and saw a letter from a retinoblastoma survivor. I too am a retinoblastoma survivor. I am not American. I am from Venezuela, but went to an American school since we lived in an oil town and then went to undergraduate and graduate school in the United States.

Do you know that in my 55 years, I have never met another retinoblastoma adult survivor? You only hear about children. I guess adults have just moved on and not talked about it anymore. Why do you think that is?

I am glad to hear that another survivor had such a fruitful life and a full life. I am married, also to an engineer and have two grown children. They are both still single. The boy is 24 and is an electronic engineer and the girl is 22 and has finished dental school. She still has a lot of school in front of her!

How many people can say they dated a lot, had a lot of friends and several marriage proposals? I did. I also always had and have many good, good friends, and a busy social life. I was married once, and it did not last, but have now been married for 25 years.

I never thought that I had to do better at other things than anyone else. I really don't think much about having had retinoblastoma at all. I never blame any of my misfortunes on retinoblastoma except at a [sic] very low points from time to time. Once when a guy broke up with me, but even as I was pitying myself, it sounded lame even to me.

I have a family predisposition to depression so perhaps that coupled with my retinoblastoma has given me bouts of depression. It has been explained to me that whenever there is any meaningful loss in childhood there is a mourning period. That sounds logical to me.

I have a BA in Psych and an MA in special education. I prefer working with special needs children. I hope other retinoblastoma survivors will share their stories with us in the newsletter. I look forward to hearing from more people and thanks for letting me tell my story.

Before we learned that Jeffrey had retinoblastoma, we were a pretty "normal" family, whatever that means. My husband works nights and I work days so one of us is always at home with our other two daughters. They attend school most of the day so it is very doable. We had the usual spats and disagreements that any couple might have until the day Jeffrey was diagnosed.

I felt like I was all-alone in the world. My husband was very quiet, did not ask any questions and just sat there. I asked many questions about the diagnosis, what it meant for our other two girls, future children, but most importantly my fear was that Jeffrey would die. Of course, none of that happened. Jeffrey was very lucky. His retinoblastoma was in one eye and after it was removed and he got his prosthesis, he was the same little boy, only better as he did not have cancer any longer. Jeffrey is a regular kid now. He plays soccer, wears his goggles, loves performing in school plays and speaks openly about his retinoblastoma and prosthesis. He is a true blessing.

However, my husband and I have traveled a very rocky road. I still cannot understand why he won't talk about it and we have grown apart over these last five years as a result of Jeffrey's diagnosis. I know that he was very affected by the news and the surgery, but I am his wife and he will not talk to me. I have been to see a counselor who has explained the ways in which men and women handle feelings differently, but I fear our relationship will never be the same as it once was. I am resigned to live with my husband no matter what, but it is very sad and very hard.

I decided to write about this because on one of our return visits to the doctor I met another mother and we got to talking. Eventually we went out for lunch, a real treat, and she told me about what happened between her husband and herself. They are no longer married, but it was the same story. She asked questions and talked and talked about how she felt and he just seemed to go away. I know there are people out there reading this who have the same experience. I just want you to know that you are not alone and that this seems to be a normal reaction for many couples facing this problem, or maybe any serious problem with a child. Some of us can stay together and, as I have learned, some of us can't. But, there is no right or wrong. We all do the best we can. I send you all my love and my prayers for a smooth journey on the road to the cure to your child's retinoblastoma.

Where do angry feelings come from? As parents, we need to help our child express feelings effectively and learn that she can handle them herself. Most often, anger arises when our well-being appears threatened. If we feel endangered or slighted, anger is the likely result. We seem to have been designed to react in this way so that we will recognize our predicament and do something about it. In fact, anger can set off a physical response, flushing, breathing fast, etc. that pushes us toward aggressive action.

Often we misperceive a threat and overreact. Or we may have an inflated view of what we're entitled to, and become irate about something we'd do better to accept. One four-year-old, disappointed that his birthday party was winding down, stomped into the living room as the last guest left, and to his parents' amazement, mightily toppled over two heavy armchairs. He could not accept that his special day would not last forever.

Angry feelings are an internal signal to warn us of a threat, real or imagined from without or within. However, when these feelings don't help us resolve the conflict, or linger, there is a cost. Later on we may transfer our initial feelings to an unrelated situation, or turn them inward and become depressed.

Naming feelings ~ The longer anger lingers, the harder it is to shake. That's why, early in life, learning to identify and name feelings is a critical skill. Before children have words for them, they have feelings of irritation, frustration and anger, and they experience the physical sensations that go with them.

Young children are for the most part too caught up in the moment to monitor their own feelings. As a result, they are often taken by surprise, and may need our help to figure out what the feeling is, where it came from and what to do about it.

One first-grade teacher shows her students how to pay attention to angry and overexcited feelings by describing the "escalator of trouble", as she calls it. She teaches them to notice when they've stepped on the escalator and how high up they've ridden, that is, when these feelings start, and how strong they can get. Their anger seems to push them higher and higher, out of control. But, unlike any other escalator, this one they can learn to safely jump off of before they reach the top. Who knows what they'd find on the next floor?

Handling anger ~ It is important to help your child find constructive ways to handle anger. Later she will need to feel confident she can control it on her own. From the start, you need to be careful not to take this job away from your child. Sometimes kids, and adults, begin to handle an angry feeling even before being fully aware of it. You can help a child discover and strengthen these natural responses. Then you can suggest ways to take care of a distressing feeling. These depend on a child's stage of development and on just how upset a child is. Timing is critical. Most strategies can work only when a child is receptive.

Establishing safety ~ Whatever the cause, if anger is still exploding or is about to lead to a counterattack, safety comes first. Everyone must be assured that he can keep himself safe or will receive the help he needs to do so. Swoop in decisively. "Stop right now or I'll have to stop you." Show your child you mean what you say. Separating the children involved always helps. Isolation gives each a chance to calm down and regain control. After they've quieted, give each a hug. They'll need to feel they're still lovable before they'll be ready to listen.

Setting limits ~ Setting clear limits reassures your child he will not be hurt. If he is to learn to control his anger, he can't be too afraid of it to face it. For example, parents may need to say, "It doesn't matter how angry you are, you are not allowed to do that, no matter what."

Sometimes a few words that show you understand why the child is angry, even though you can't accept the behavior, you will settle him. For example, "Of course your friend made you angry when he ignored you. I don't blame you for getting mad. But that's not the way to let him know."

Soothing the self. Strong feelings like anger interfere with clear thinking. Anger brings a problem to the child's attention, but it doesn't point him toward finding a good solution. This is when time-outs can help, not as a punishment, but as a quiet time for calming down. A drink of water or a hug can help too. Once a child has settled himself, he can figure out what is bothering him and what to do about it.

Problem solving ~ When a child understands what has made him angry, you can help him plan what to do about it: Either he can influence people around him to respond in a different way, or at least agree to try, or he can adapt and respond to people in a different way himself. Often the solution involves a little of each.

A child who is raised to expect others always to adapt to his needs will be ill prepared for the world. One who feels he must always adapt or give in and never advocate for himself will fare no better. Helping an angry child problem-solve teaches him both to recognize and adapt to what he must accept, and to fight against the unacceptable.

Give a child a chance, short of injuring someone or himself, to learn from experience about how far he can go and when he's gone too far. As they get older, most kids learn to control themselves enough to find words to express their anger. Being understood is sometimes enough to settle feelings.

Conflict resolution begins with recognizing that conflict exists, and it arises from different desires and needs. Each person needs to put aside his own perspective long enough to understand the other's views. Sometimes shared goals can be found. Unreasonable expectations can be readjusted. These are complex tasks that we will help our children with over many years.