AIDS comes to real children. That was my thought or "leading idea" in writing this book. I felt when it was published that we had seen a considerable number of responsible books appear for children that taught "the basics," either in straightforward style of a didactic text, or in the framework of a teaching story.
I wanted this title to become part of the emotional side of AIDS education because the hardest problem for elementary age children (and older as well) is not that a classmate has a disease that is "yukky" or mysterious, but, that a classmate is slowly dying. Since the late 80s when I began working on this text, and created a character who at that time was ten, contracting AIDS from a transfusion is less common than it was prior to 1981 (the presumable birth year of a child age 10 in 1991), but even today it is not impossible, and term "blood transfusion" can, of course, mean that a mother, in her twenties, might have become HIV positive from a transfusion up to a decade prior to that, and then, transmit the HIV positive condition to her baby; aside from the simplification I chose in deciding how ALEX got AIDs, I felt the book might have a future because the US population of school age children with AIDS has grown during the 1990s and during the first decade of the 2000s. The last decade has seen so many improvements in our treatments for AIDS in very young children that children born HIV positive who once would have died within months or a couple of years are living longer -- into the upper elementary age group, where ALEX THE KID WITH AIDS is set. And, they can have years of relatively healthy living, while HIV positive and even with AIDS in active status. Some critics have said Alex should be "sicker," but that is not medically correct for the age group this is showing. This book will soon be twenty years old; I'm proud of the fact that, in showing that people can live in relative good health for a very long time while HIV positive, made it a book with a future relevance overall. A child with AIDS is not necessarily "on his death bed." That is an unnecessary stigma.
The book can be used with any situation where a child is still in school, and is dying of an incurable disease. AIDS attacks the immune system; the usual cause of death is not AIDS itself but the opportunistic diseases and infections that take hold -- so an "AIDS death" in a child often has a different immediate cause and a death certificate will not always indicate the presence of underlying HIV status. As Alex receives blood transfusions and drugs to keep him going, the book's backdrop is a long battle of doctors against immune deficiency. My goal in using the transfusion as the source of Alex's problem is that nothing he or his parents did or failed to do "caused" his condition. This clarifies and simplifies the plot so that the emotional base can be where I wanted -- on impending but not immediate, "any day now" death, and despite that shadow, not letting the opportunity for genuine friendship (rather than just pity) disappear.
Real children feel stigmatized by any condition that is not curable. They make friends differently; Michael at first knows Alex is not contagious, but he still feels aversion; both the friend and the child who is dying must come to terms with both friendship and fear or loneliness. I wanted to write a book that would touch upon these "softer" yet perhaps deeper themes, at a time when AIDS education per se (info that AIDS does not spread by ordinary contact, yet the warnings about blood contact, etc.) is the "easy part" and is probably taking place in many schools and families. Handling the children's feelings beneath that was one of my goals.
To the critic who disliked the book because she felt a teacher "should not" dismiss a poem from a contest merely because it makes fun of a teacher, I say, check it out in a real school: many will disagree! Alex makes fun of a teacher, but the book never makes fun of Alex, ever. The poem Alex writes is "out of bounds" as many people would see it. In fact, a more realistic "objection" to my plot might be that Alex's parents, if they saw the poem, would probably discourage him from submitting such an unkind poem to a school contest, since that's a form of "publication" and Mrs. Zanes is a real person with feelings. But in my plot, the parents don't see it or interfere, which is also plausible. That's why Alex writes it in class and submits it without mentioning his parents. Moral reasoning comes though when the narrator Michael asks Alex that night, "Are you sure we can put a poem about a teacher in the contest?" and Alex replies, "I told you, I can. I'm sick." In other words, this shows Alex knows a poem is "out of bounds" -- but he's counting on his condition to let him do it. I'll defend the reality of this point and so will some teachers I know. Editors at Whitman felt so, too. Of course Alex's poem is "nasty," but so are real children at times. Alex HAS developed the idea that he can get away with stuff. Thsi is not "making fun" of Alex. It moves the plot forward. By the end of the book Alex has received and extended real friendship, so he has moved away from the immature view he had. This could spark thought and discussion among readers. I disagree with authors for children who feel everything in a book must always be "nice" and kids can never make mistakes, or act from immature motives, and I disagree that a child with a serious illness should always be shown as a sweet angel, passively accepting help and friendship from others, etc. Alex is emotionally a real person, dealing with a physical problem and he's getting into mischief, thinking he's got a "pass" from, teachers and others.
I am mystified by the comment someone made that this book "makes fun of children with AIDS." The use of humor with a serious subject may be unusual in what we used to call "bibliotherapy" but, Alex is never ridiculed in any way!!! The teacher scolds him, but, for exactly the same reasons she would scold this behavior in another student, and her correction is justified, and has a good result. Alex, in his own way, and his friend Michael, the narrator, both are heroes in the book, coming to terms with his probably-fatal illness, and realizing illness should not isolate Alex in the classroom or with his peers. While he lives, he decides that he wants to be, and should be, part of the class, and not "special (exempt) character." He's not the "untouchable." Alex has no control over AIDS or his fate. But he does decide who he is, while he's alive. I like to have children who are active in all my books, who think and react and create themselves as confident, social children. In the end, he still has AIDS but is a healthier person.
While Alex is an active, alive character in the book, becoming who he wants to be, AIDS education should be multi-dimensional, in my view, not "just the facts." The model of teaching through a good plot can touch upon much more, though correct medical facts are important to convey, amidst all the misconceptions and stigmatizing continues to appear out there. It has been gratifying to me that, in over 20 years since 1991, this book not only went from hardcover to paperback, to reach a far wider audience, but, was reviewed in leading journals as "first and best a good story," (BCCB)and also "both convincing and entertaining" (Booklist), but is still out there at huge discounts today, still making a contribution to an area of need.
I have never had to deal with AIDS at first hand. I conducted a lot of research and worked with professionals in therapy and medical fields, to create the book, at a time when the average American thought there were no, or very, very few children in schools, who are HIV positive, and for those that there were, there was a civil right to secrecy. Even though an author is not the one giving "reviews" to a book, it has stayed out there, afloat, and selling to various users, for twenty plus years. Not every book is for everyone. Nonetheless I think the survival of this unusual, narrow-purpose book is testimony to the richness of our American field of books that, if they can deliver "a good story," can approach sensitive subjects and find the right audience. Today most children dying of AIDS are on other continents, not North America. Until we find a cure, however, we do not know what the future of this dilemma may be. One final note: I do not attach the stars to this review.