Sexuality And Disabilty: Education, Advocacy & Support
Watching Teddy Grow© 2002-2007

Teddy’s life has been an extraordinary one for a variety of reasons. Watching Teddy grow and helping him to become an adult has become the central activity to my life for the last eighteen years. His arrival in my life has caused me to reconsider and to expand nearly all my ideas about what life means. Frequently I have been asked to write a book detailing our experience as a family.

I always promised I would write our story when Teddy turned eighteen and so he has. I begin the book simply with the story of how Teddy and I became a family. In the chapters that follow I describe the struggle we faced in understanding what meaning to attribute to such basic concepts as race, culture, gender, sexuality, religion, death, community and truth - all within the context of experiencing life through a lens of disability. This is not a book about the limitations of disability, or how wonderful life can be when you overcome disability, but how living with disability expands your definition of what life is.

This book is about me when I was born and when I was a little boy. It is about how I have a good life. It is about the people who take care of me, play with me, and love me. It is about growing up, and having a good mother who always love me. It is about learning to be a good man, a happy man.

The End of Me Alone

The Beginning of Us

Brown and White Teddy Bears

When Teddy was very young, he and I often took New York City buses and subways on which he frequently became the object of conversation. It never ceased to amaze me how intimate the questions people thought they were entitled to know the answers to. One day an elderly woman irritated me to the breaking point. On a bus load of attentive listeners she asked me whether my baby's father was Chinese. I replied, “I’m not sure; I don’t know exactly who his father is.” I let this bombshell lie in the silent bus for what seemed like hours and then I said, “He’s adopted.”

This incident was a turning point in Teddy’s and my life. It was in this moment that I ceased to think of the difference between my race and Teddy’s as something of little consequence. It forced me to think about race in ways I had never thought of it before.

In my family of origin, race was a sensitive topic. My family roots are from the south where racism and prejudice are without apology spoken aloud. In my childhood I repeatedly heard my grandfather describe his business practice as hiring Jews to handle his money and Negroes to do his backbreaking work. I can recall my mother repeatedly commenting on the disgust she felt when she saw interracial kissing broadcast on TV. My parents made it very clear to me that I could not date men of different skin colors and were only marginally accepting of men from different religions. I was stunned recently when my mother casually mentioned that she never went to a grocery checkout line that had a Black woman working it.

Teddy was an unusual-looking baby. He had warm cafe au lait colored skin, a very broad nose, big brown eyes with a distinctive Asian look, and very thin straight brown hair. I, on the other hand looked typically Anglo-Saxon. No one ever questioned my race - it was obvious. His birth mother’s skin and hair were much darker than his, and she wore her hair naturally in the Afro style of the day. Her surname was Spanish, she self-identified as a Puertoricana, but spoke no Spanish and had never been to Puerto Rico. I met his birth father once, a very tall massively built man, who like his birth mother was much darker than Teddy, and had a Hispanic last name.

The first question I explored was - What is Hispanic? Is Teddy Hispanic because his mother told me she was a Puertoricana although she had never been to Puerto Rico herself? Must you speak Spanish to be Hispanic? Does the word Hispanic identify a culture, a race, or both? Does it matter that Teddy’s parent’s skin is dark and his is light? Since race is such an ambiguous notion, can you just choose what race you want to identify as?

I never completely answered those questions for myself or Teddy as what to me was a complex problem, but had one aspect of it remedied very simply by a toy. I wanted to buy Teddy a baby doll for his first Christmas. When I went to the store to buy one, I suddenly faced another problem: What color skin should the doll have? None of the “White” dolls really looked like Teddy, but then the “Black” dolls didn’t either. I finally discovered a line of dolls that included a “Brown” (Hispanic?) doll. I still was unclear what race Teddy should identify as, but I know knew the color of his skin was brown.

Further propelling me into a quandary was our trips to the sandbox as warmer weather loomed. Little children did not hesitate to ask me why Teddy’s skin was darker than mine. Telling them people come in all different colors and that he was adopted did not satisfy them. Would it satisfy Teddy?

I wanted to buy Teddy a doll house family, but was stymied by my limited choices. A catalog advertised we could have an all-White, Black, Asian, or Hispanic family of a Mom, Dad, boy child, girl child, and baby. I could have just bought two families, but I just wanted two persons. I ended up buying small jointed, flock cloth animal characters that could be bought individually. Our family was the bear family - a Mommy polar bear and a baby grizzly bear. Over time I added more animal families. Some were one-color animal families like the three hedgehogs, or three skunks; but there were also a grey mommy and red baby squirrel family; and a brown mommy, white mommy, and grey baby bunny family. All the animals were named after people we knew and were configured to be similarly diversified by color and sex.

Teddy always had a large selection of art supplies at his disposal. These included various flesh colored paints and crayons. I went to great effort to be sure Teddy’s preschool classes also had diverse flesh-colored art supplies available. Teddy invariably chose brown to color his skin, but my skin might be yellow or peach or purple. I still remember Teddy telling me, “Your skin not white Mommy, clouds white.” We had one of our first discussions that did not focus on the color of his skin, but on mine alone. He could look at his skin and see brown, but it made no sense to him that my skin was called white. He also called into question the color of other people’s skins by trying to name their skin color: black skin was not always as clear-cut to him as it often was to me.

Although I now felt comfortable with defining Teddy’s skin color as brown, I was still uncertain about his race. In a support group I attended for families with children identified as having Down syndrome there were two Black families. I asked both questions about race. They saw them selves no longer focused on issues of race: now the issue they confronted was disability. They lived in communities where they were accepted as a Black family: now they needed acceptance as a family with disability. These families were as a unit one race, and I didn’t think I could so easily dismiss race as they had. But, I also had to consider that their race was an identity they had held all their lives and the identity of disability was new to them.

I tried to imagine the impact of race upon Teddy. Did your race matter when you also had a disability? I have a friend who contends that Teddy’s disability is so predominant in his presentation to the world that his race becomes insignificant. I have considered Down syndrome to be a minority group, could it also be considered a distinct race? Merriam - Webster defines race as “a division of mankind based on hereditary traits.” Although you do not inherit Down syndrome per se, you are born with three sets of the twenty-first chromosomes that are the definitive marker for being labeled with Down syndrome. When the census expands the number of races from sixty-three to whatever in 2010, should Down syndrome be added?

Teddy and I also participated in a Latin American adoption support group. Families whose children came from Peru, Bolivia, and San Salvador got together to share adoption stories and learn about the culture their children were born into. At first, this seemed a comfortable place to be a part of, especially since I had lived in Peru as a child. (My family lived in Lima for a year as part of my father’s employment.) But, as Teddy grew older I came to realize that being born in East Harlem is very different than being born in Lima, Peru. Although in some ways we still had much in common with the other families, in the end it felt like we didn’t belong. Our adoption story did not have the same joyful aura of rescue from abandonment, excitement of a foreign culture, and mysterious intrigue that the other stories had.

I went to a few meetings of a multi-racial family support group. The goal of this group was to negate the power of racial identity: the concept being that no one is truly of only one race and so we should stop identifying ourselves with any racial identity. As much as I wanted to support this notion, I felt I still needed to know what box to click when it asked for Teddy’s race. I wanted to know what race I should try to help Teddy feel proud to be. In the group, I met a man from Puerto Rico who was very dark skinned, and I asked him about my concerns. He insisted that in Puerto Rico there is no question of race, he is a Puerto Rican. He told me to forget the racial question. I wanted to, but could not. My race to me seemed inconsequential, Teddy’s did not.

Golf professional Tiger Woods when he first took the world by storm was perceived to be a Black American. After Woods won the 1997 Master’s Tournament and was interviewed by Oprah Winfrey he said he wasn't actually Black at all-- he was Cablinasian (Caucasian-Black-Indian-Asian.) He described his father as half-Black, one-quarter American Indian, one-quarter White and his mother half-Thai and half-Chinese. Woods did not want to ignore the racial question, or become a new all encompassing racial amalgamation, but be defined by each and every race that had an impact upon his identity. Was the message I could glean from this be that Teddy was not only Black and Hispanic, but also White? Was I shortchanging Teddy by raising him to think of himself with one or no racial identity?

I considered the concept of passing. As my light brown skinned child, it can easily be assumed that Teddy is White (only well-tanned) like me. Is being a racial minority in American society like being Gay: no one would choose to be Gay if they had a choice? Does the one drop of Black blood rule still make you Black no matter how light or mixed you are? I considered what identity would give Teddy the best life. Would Teddy be able to be employed, to have a nice place to live, to be a member of his community without relevance to his race? A study that compared the rehabilitation success of various races concluded that “Blacks fared worse at every step from referral to closure” (Atkins & Wright, 1980, p. 44). In the end, I decided I wanted to raise Teddy with the truth, but I was still unsure what that was.

As Teddy grew out of infancy, he would often lay his arm next to mine and examine them. He would point out the similarities and the differences between our arms. He never asked a question, although it was obvious to me that he had one. He would point out children who looked like him in color and in disability and tell me they were like him. “Look Mom, that girl is the same color as me.” He also pointed out families where the mom was white and the children were not and tell me they were like us.

As Teddy socialized more independently of me through school, I noted a pattern when we met his Black friend’s moms. They often verbally expressed a surprise that I was White. Unless they knew me, they had assumed I was also Black. When I asked them why, they said because Teddy was obviously a Black child with his high big round butt, and his broad flat nose. When I met his friend’s moms of other races race was never brought race up. If a White mother overheard one of these conversations she might chime in with a comment that she never thought Teddy looked Black. Is your racial identity about how you look, how you live, or your genetics?

It wouldn’t be until Teddy was in third grade and had a Black male teacher that this question would become substantially resolved. This teacher had skin color only slightly darker than Teddy’s, and had a Hispanic last name. He identified himself as Black. Teddy identified himself as being like this teacher. Over the course of that year Teddy began to describe himself as Black and brown. He was very clear about being brown. “ I am brown, I have brown hair, brown eyes, and brown skin - I love brown”, but he also noted that others were “Black like me”.

For the first time he started to show a preference for “his” culture over mine. He had always been exposed to music from Hispanic and Black cultures among others, but now showed a preference for Black musicians, TV shows with Black characters, and pointed out dark skinned girls more often than light skinned girls as being pretty. The radio in the car became a source of conflict as he was drawn to rap music, and I preferred we listen to blues and classic rock.

Long before I began to seriously worry about how to support my child in his new distinct identity he seemed to settle into a much less rigid view of himself. His interests widened again. Although I still note some preferences than seem to be culture-specific, Teddy now seems very comfortable with his melting pot identity. But, skin color is still interesting to him.

Each year when a new school year begins he never fails to tell me what color skin a student has and it is always in comparison to his own or mine. “Fadi has White skin,” (He has, in fact, skin color very similar to Teddy’s, but Fadi’s family are relatively recent immigrants from the Middle East.) “Kanzi has brown skin like me,” (Her skin is much darker than Teddy’s is.) “Billy has skin like you,” (He and his family are most definitely readily identifiable as a White family.) He consistently uses skin and hair color as a reference point to describe people he meets. I find it difficult to strike a balance between supporting his interest in the outward appearance of people, and trying to help him see what is really important to know about a person is how they interact with him.

I will never know to what degree I fostered his interest in skin color through my own indecisiveness about his skin color and race. When I asked Teddy what he thinks about skin color he replied,

“I like all of them. I like being dark, I like being brown. I like Black people a lot, I like all the people a lot. I like Martin Luther King – he black like me. Oprah, too. Black people come from Africa. White people are good, all my family are white – not me. I don't want people to kill people because they have skin. I want people to hug each other and be nice to each other, not angry. People take care of each other and stop hating and be happy.”

I cannot say we have ever or will ever embrace the notion that his or my race doesn’t matter. It is clear to me that my child is entitled to know that it doesn’t matter what color your skin is - you are loved.

Gay Pride and Prejudice

It is unclear to me whether Teddy really understands the concept of gender, in part because from the beginning of his life with me he has been exposed to people who identify themselves as Gay, Lesbian, bisexual and transgendered. My circle of friends has always included many Gay men. I volunteered as a crisis intervention counselor for the Gay Men’s Health Crisis before and after Teddy’s arrival in my life, and we often went to their social functions together. Teddy would often be the only child in attendance and would be encircled by men who too rarely had the opportunity to interact with a young child. Teddy had no awareness of who had sex with whom, but loved being the center of attention. He also enjoyed that some of the men (who were still obviously men to him) dressed up as women. Even as a toddler, Teddy seemed to see the incongruity of a man dressed as a woman.

Jim and Mark were the most important men in my life before Teddy, and they became equally important to Teddy afterwards. For the first few years of Teddy’s life they acted as his fathers. Uncle Mark and Uncle Jim were lovers, and I am sure Teddy understood this on some level. Until their relationship ended, he rarely saw either of them alone. (photo of Jim, Mark, and Teddy)

Mark was a very hesitant father, mostly watching from the sidelines, but then Teddy would crawl into his lap, and he could not resist. Mark rarely initiated contact, but never refused it. Teddy always knew instinctively when to attack Mark with kisses and when to just lean on him peacefully. Mark and I often wrestled in fun, and Teddy would climb into the mix. Teddy would laugh hysterically, and Mark would let down his ever-present guard.

Mark was not much of a hands-on father, but he was always concerned about choices I made about Teddy. He supported me in my decision to offer Teddy toys designed for both boys and girls, and to dress him in clothes of both traditionally masculine and feminine colors. Teddy learned with Mark’s help that being a boy was not dependent upon what he wore or what he played with, but that he had a penis.

I always thought Mark would be a good father, and I was glad for both him and Teddy that they had this relationship. Sadly, Mark’s death from AIDS was the first death Teddy would experience. Thankfully, for Teddy’s sake, Mark and Jim had separated a few months before and Mark had moved to California. The tie that bound them together remained strong, but they no longer had a day-to-day relationship.

Teddy and Uncle Jim were always close. Jim was very demonstrative with his affection. He also was quite willing to change diapers, baby-sit, sit next to him at a restaurant, accompany us to the park, and show him off to his family. I know that many people assumed Jim was Teddy’s Dad. I was thankful that Jim showed Teddy by his actions that men could be just as good at giving care as women.

Jim was very much a part of Teddy’s daily routine when HIV began to take its toll on his life. One of the happiest days in my life and the saddest in Jim’s happened at the same time. Teddy was adopted, and Jim’s HIV status was upgraded to AIDS. Jim was too ill to be at Teddy’s adoption ceremony. Partly because with Teddy’s adoption we were finally free to live where ever we wanted, but also partly because I did not want Teddy to watch Jim slowly die, we moved to Michigan where my family lived.

Some fifteen years after the death of Uncle Mark and Uncle Jim, Teddy will sometimes start to cry without apparent cause and say “I miss Uncle Mark” or “I want my Uncle Jim.”

About the time of Jim’s death, my mother, who lived near where we had moved in Michigan, discarded a bright red flouncy square dance slip. Teddy found it and decided to wear it. Seeing a four-year-old wearing a bright red slip that encased all except his head was very amusing. Little did anyone know that his interest in wearing this petticoat would last ten years and in time require strict rules about when and where it could be worn. (insert photograph of Teddy in red slip)

Teddy seemed unable to understand that wearing the red slip could cause him to be teased. Teddy and I frequently had to argue about whether he could wear this slip outside to play or to school. “I need it!” He loved to stand and twirl in it. His interest in female attire was not limited to this red flounce, but included a desire for clothes of feminine colors and silky textures. He also held a fascination for Barbie dolls. He loved to change their clothes and twirl them about so their hair flew about.

I saw an indicator of Teddy having confusion around gender at three to fours years of age because when he saw people very obviously dressed as men or women he could not consistently interpret their clothing cues. “ Teddy views people by their role in society, rather than their sex - mommies, daddies, childen, babies. He knows he is Mommy’s boy, but does not know how this differs from being a girl”, except that he knows he has a penis (Fitzmaurice, 1988, p. 7.)

Much to my consternation, this confusion inspired Teddy to ask countless persons if they had a penis or a vagina. “You have a penis?” It is difficult to ascertain whether Teddy had a delayed ability to decipher a person’s sex, was not ruled by society’s notion of what people of a certain sex look like or was questioning the constancy of his own sex. I wondered whether he understood that all men had penises and all women had vaginas, and if this confusion had anything to do with his early exposure to transgendered and cross-dressing men. I did not observe his friends without disabilities having similar confusion, and many of them also grew up with gender-ambiguous lifestyles, single moms, and had relationships with gay men and lesbian women.

As Teddy entered middle childhood I had a growing concern that he would have life long problems with his gender identity. He had friendships primarily with girls when other boys his age were divorcing themselves from interacting with girls. “Gender segregation usually begins around age 8 and peaks at about ages 10-13 (Allgeier, p. 394),” but I saw no signs of this developing in Teddy. He still had his desire to wear the square-dancing slip and play with Barbie dolls.

I was worried that Teddy might be Gay or a lifelong cross-dresser. If he did not have disabilities, this would have been of little concern to me, but I felt sure he would have very limited access to the experiences that would bring him pleasure. People with cognitive disabilities have enough difficulty being sexual when what they want is considered mainstream heterosexual behavior. I knew too many people with cognitive disabilities who have been prevented from participating in any sexual behavior what-so-ever no matter how mainstream it was.

I asked Teddy if he remembered wearing the red slip and he responded, “I wore it when I was little. I like dancing in it. I liked wearing in. Nothing funny about it, it was just the way I dressed. I dance around and spin around. The dress moved.”

If Teddy were to be Gay, I knew I could support him in his choice of lifestyle, but I wasn’t sure the Gay community would be as supportive. In all my years of advocacy in the Gay community I have never seen anyone address the needs of people with disabilities except in the context of AIDS. Would Teddy be able to socialize in Gay-oriented venues? Would Teddy ever be able to have a fulfilling sexual relationship? If he did not have me as a conduit would he have any access to the Gay community at all?

I considered that Teddy might be developing his gender identity at a slower pace due to his disability, but when I discussed this with a number of professionals involved in his life none offered any opinion based on direct experience. Furthermore, they also discouraged me from imagining that a gender identity would be that important for Teddy to acquire. I was repeatedly told that most children with disabilities like Teddy’s were not interested in sex and if they were it was best to discourage it. Thankfully in hindsight, I took little stock in their notion of Teddy as asexual.

Until Teddy was ten, I made no determined effort to dissuade him from abandoning his beloved square-dance slip, or discourage his interest in girl’s toys or with playing largely with girls. Each Halloween I made Teddy elaborate costumes and each Halloween Teddy wanted a store bought Cinderella or Barbie costume. Finally, I discovered a possible solution - he would be Dracula and wear makeup and a long cape. This was a surprisingly effective solution. With encouragement Teddy substituted wearing the cape for the slip in his day-to-day play. It was more appropriate for a ten-year-old boy to twirl about in a Dracula cape than a square-dance slip, and yet both seemed to give him the same pleasure. And both caused the same argument about wearing it to school. “I need wear it!”

Learning to play with boy’s toys, playing boy’s games, and be interested in male peers required more effort. I enlisted the help of a young adult male with Down syndrome to spend time with Teddy. This backfired as the young adult took his cues from Teddy not me. One day I left them in K-Mart to look at sports equipment with strict instructions to stay put while I looked for another item. When I returned a few minutes later they had disappeared to the TV area and were sitting on the floor watching cartoons. It took over an hour to find them and when finally found Teddy said, “We not lost Mommy, we here.”

I also found college-aged girls with boyfriends to take Teddy to sporting events and play outdoor games. This also proved ineffective. Teddy fell in love with the girls who showered him with attention and grew jealous of the boyfriends who drew their attention away. “You no marry Jennifer, I marry Jennifer when I big.”

In conflict, I found it necessary to tell Teddy that his playing with girl toys was babyish, and refused to purchase Barbie dolls for him. I insisted he watch me play with masculine toys purchased for him, even if he chose not to join in. This increased his interest marginally. He would show cursory interest in Lego building and running train sets for a few minutes and then switch to looking at picture books or dancing to music.

Teddy’s puberty was marked by many changes in his life. We moved to England and lived with a man I met over the Internet. We had frequent visits from his two sons - one older and one younger than Teddy. Suddenly, Teddy found himself living in a male-centered household. As his stay-at-home mom he still spent an inordinate amount of time in my company, but now he had role models who turned their heads when pretty girls and fast cars passed by.

The onset of Teddy’s puberty was timely in many ways. His interest in girls as girlfriends served to ameliorate my fears that his gender identity was confused and was age-appropriate sexual interest even without taking into account his disability. Teddy began to discuss wanting to grow up and get married and have babies and be a Dad. When he discussed what work he might like to do he chose typical male professions, even when offered all kinds of opportunities. “Mommy, I want to be a fireman and have a fire dog and help people.” He began to be seriously interested for the first time in playing with cars - but as a type of role rehearsal, not just bang them into each other as he has before. Although Teddy’s androgyny still concerned me, he had begun the “primary task of adolescence....,"and began his “...development of a coherent identity as a person...recognition of himself as male or female - gender role identification (Allgeier, p. 412.)”

With the advent of the Spice Girls, Teddy showed even more telltale signs of his gender. At first, his interest was naive, but over time he would blush and get erections when he would watch a Spice Girls video on TV. He began to especially idolize one Spice Girl, Baby Spice. He told me he was in love with her and would marry her. “Mom, I am going to marry Baby Spice.” This interest in girls seemed to be mostly focused on very public figures; He was also in love with Princess Diana. None of the figures Teddy showed a romantic interest in were men, and in this I found relief.

The most recent concern regarding Teddy’s gender has been his announcement that he was Gay. He has told friends his age that he is Gay and wants to get married to his male friends. Two girls his age came to the house and told me he had repeatedly said this and it was causing some of his friends to avoid him. I was very distressed both by an announcement about which I was clueless, and that he was being avoided by friends. If he were Gay that was OK, but if he were not, I did not want him ostracized for making comments of which he did not fully understand the ramifications.

We discussed his announcement at length, and it became clear that Teddy had made this decision based on overhearing me and others when he said, “All the good [available] men are Gay,” and “I want to be like Uncle Jim. I be Gay when I am big like Uncle Jim.” I explored what it was he wanted to be like when he thought of Uncle Jim and it had nothing to do with sex. It boiled down to his simply wanting to be like Uncle Jim and Uncle Jim just so happened to be Gay. When I asked him did he want to kiss men, he said “No, I want to kiss girls.” I explained that this meant he was not gay, he was straight. In continuing discussion I realized that he had never understood the term straight as a particular sexual orientation until now.

Yet, this situation was of such concern to me that I contacted a professional counselor. This counselor suggested that I make available to my son heterosexual erotica and that we discuss explicitly what it means to say you are Gay. He suggested photos of female rock stars, more mainstream men’s magazines like the Sport’s Illustrated Swimsuit Issue, and women’s lingerie catalogs. Teddy had posters of Britney Spears and the Spice Girls we had never put up. So these were put up on his bedroom walls. In an amazingly short time, Teddy began to spend an inordinate amount of time in his room and he made a point to tell me, “Mom, I’m not Gay, I was foolin’.” ( Teddy often uses the word 'foolin’ to describe a situation he has resolved differently than how he first intended.)

One of my greatest fears for Teddy’s future has been for the moment eliminated. Teddy’s sense of himself as a male is still marked by feminine and masculine traits, but his overall presentation is most definitely a masculine one. I am heartened that he harbors no negative feelings regarding people who practice non mainstream sexual lifestyles. I no longer fear that his adult life will be lonely due to wanting to be part of the Gay community where few people with developmental disabilities find welcoming peers. I am not concerned that he will have difficulty finding a place to live or work due to his inability to appreciate the heterosexual and non cross-dressing sensibilities of our American culture.

“Some men like women. Some men like men. Like the rainbow flag. We different, we the same. Sometimes people are scared being gay. But not me. I not gay. Some people don't like gay people. I don't like that because it hurt their feelings and they are nice people – they're not strange. I like it if two men and two women get married.”

When Mark died he was far away and although Teddy was affected by my grief, I am not sure he experienced any of his own. For Teddy the day-to-day intensity of the familial relationship was gone. Mark was kept alive to Teddy through family stories and so to him not much had changed.

Not so long after Mark died, Jim died. This death was more difficult for Teddy. Teddy understood that Uncle Jim was sick and had Mark’s death to put death in context with. He was upset knowing that Jim would die. His communication skills were poor, and telephone conversations with Jim did little to prepare him for the inevitable. I found it difficult for both of us to be at a distance from Jim at this critical time in his life, but I also felt it was important to Teddy not to have his life overwhelmed with Jim’s very slow dying. I knew too that Jim’s death would be devastating for me, and I needed to allow others to take the main role as Teddy needed me as a full-time mom.

When Jim died we went to a funeral with his family and a celebration of his life with his friends. The funeral was devastating to Teddy. He saw Uncle Jim dead in a coffin and did not want to leave him there. We sat some distance from the coffin for a long time and tried to help Teddy make sense of what was happening, but as my own beliefs around death were muddled, I was not of much help to him. I was also devastated when I saw how much AIDS had changed Jim since I had last seen him and was wracked with grief. In the end, I think allowing Teddy to hug and kiss Uncle Jim goodbye was what he took the greatest comfort in.

I think the celebration of Jim’s life confused Teddy. Although Teddy knew many people there, his grief was more personal and he did not fully comprehend why all these people were talking about Jim the way they did. He was used to being center stage when Jim was around, and I don’t think he imagined Jim had a life separate from his. He could not appreciate the rational behind a celebration and death.

It was very different when “BoBo ” died. Teddy for some reason now forgotten always called my grandmother Bo Bo. When we moved to Michigan his relationship with her flowered. They shared something extraordinary. He was devastated by her death but took comfort in something so simple and so unplanned that I can’t believe she did not some how have a hand in it.

We were driving from Ann Arbor where we lived, to Livonia where all my family lived, and I had to tell Teddy that BoBo had died. Telling him this is the car under most circumstances would be a very poor choice as it allowed me no ability to comfort him, but it turned out to be critically important. After I told Teddy Bo Bo had died, he wanted to know where she was. I pointed to the clouds we saw from the car and pointed to a big fluffy cumulous cloud and said she was there in heaven.

Any day we have a bright blue sky with big fluffy clouds, Teddy is reminded of BoBo. He remembers her, expresses his love for her, remarks she “is with the angels”, and that he misses her. He is also reminded of Mark and Jim whom he also understands live there. “They live with all the angels too.” The I am so thankful it was a beautiful day the day my grandmother died for it seems to have given Teddy a positive outlook on death.

For many children the first death they experience is one of a pet. Teddy would lose many pets, but only after these three important people in his life died. Raising rabbits for us is a deadly hobby. We had a number of baby rabbits die with a too aggressive mother, and when we lived in England all our rabbits died from a common English rabbit disease. Each rabbit death would renew Teddy’s grief for everyone - person or rabbit - who had died before. In grief, Teddy found the most comfort in being told the bunnies were with BoBo and she was taking care of them. “ All the bunnies are in heaven, the ones from England, from Syracuse, from Michigan, all of them.” When Teddy’s grandparents’ cat died, she just naturally joined the bunnies in BoBo’s care.

Teddy, like many others, felt he had an intimate relationship with Diana, Princess of Wales. He and his classmates had danced with her in attendance at the Royal Norfolk Show and this had cemented a bond he felt to her. When she died, Princess Diana was the first public figure to die that he had any connection to. I kept him out of school to watch the funeral, and I encouraged him to draw pictures to describe his feelings. Not unlike, I suspect, many British children, but unusual for an American child, Teddy believed Diana to be a part of our family. Teddy drew pictures with all the living people lined along the bottom of the paper and the dead people in the sky. Mark and Jim were always drawn together, and BoBo was always surrounded by innumerable unnamed bunnies and Patty the cat, and now Princess Diana. Sometimes Diana would stand regally in all her finery in the background and other times she would be dressed more casually, be near BoBo, and holding a bunny. “ I miss Princess Diana, but I get to see her on TV and I remember when she happy, get married, and have her two sons.”

Sometime during Teddy’s early childhood, he got religion. My best friend from the time Teddy was about four until he was about ten was a devout Christian. I am sure Sue’s beliefs and practices had some effect on Teddy. A prayer before meals was never anything I taught Teddy, but he began to insist we pray before we eat by holding hands when he was about eight. This prayer was unconventional as it might include a desire for a particular video or a trip to Disneyland, but he clearly had some belief in a higher power that wielded some influence over his mother. I was very uncomfortable with these prayers and initially tried to discourage them, but eventually accepted them as just another nuance of our life together.

Teddy now practices his own brand of religion, which I call Touched by an Angel religion. There is a television show called Touched by an Angel that Teddy’s watches religiously. In it someone faces a moral dilemma generally due to a lost faith in God. The character is helped to renew their faith in God through the assistance of angels. I am reasonably sure Teddy understands these actors to be truly angels. I am embarrassed to admit that I do laugh at Teddy’s overwhelming belief that he is watching real angels do real Godly work, but he is nonplussed. I think one of the reasons Teddy finally learned to tell time was to not miss a segment of the nightly nine o’clock showing of Touched by an Angel. Over the years I have become more supportive of Teddy wanting to watch this show, and do watch it occasionally with him. He watches it and believes he is being given divine instruction about how to live his life. According to Teddy, Touched by an Angel is “about a message. The angels come down and speak. They help people know drinking beer games is bad, fighting and punching is bad, alcohol can make you sick, and Allsmoking gets you cancer. They help people know stealing is bad and you should take care of babies. Old people die and its ok. You speak to the angels and its OK. They help people talk to God. After they talk to God they stop being silly or bad and get a good attitude.” The segments I have watched with him have not taught him anything in conflict with how I believe people should interact with each other, so I try to overlook the heavy spiritual message I cannot connect to, but Teddy does.

“ God blesses you when you say help me God. God helps you in life and death. God makes me happy because he say I be his angel when I die.”

The tragedy of the World Trade Center has sparked innumerable questions and concerns for Teddy. He like most was stunned by the scenes watched on TV. He experienced grief around death, fear around safety, and confusion about who is the enemy. “ A whole lot of persons died. Black persons and White persons died. Old people, kids, and babies died. The American flag fell down. fire on the flag. Some people are still alive, but burned up. The people who died are in heaven.”

I found for the first time in Teddy’s life, there was an event that I could not control what he learned about it. Everywhere he turned he was receiving messages and there was no way I could help him filter everything he heard. We have watched wrestling, Jerry Springer, the news, toy commercials, and Ricki Lake together so I could help him to see what I saw, instill my values, and foster an ability for him to make good independent choices about what he watched and what he believed about what he watched. I could not do this with the World Trade Center situation. He received too many messages in conflict with what I wanted him to understand. He sees Osama Bin Laden with his beard, robe, and turban as an evil person in direct conflict with what I have always told him - people do bad or stupid things, but people are not bad/stupid.

I could support Teddy in feeling sorrow for what he was watching on TV. We sat on the couch together intertwined for support as we watched the horror unfold. There was no mistaking this was a tragedy and it was OK to cry, although I am not sure Teddy really understands how many people actually died. He took each death that was examined closely on TV as a personal experience. Six months later when we discussed the tragedy he could still recall specific people, their hairstyles, occupations, and other details.

More difficult was helping Teddy to understand that the tragedy was not an accident. Who and why would anyone intentionally fly an airplane into a building? From the media he came to understand that Osama Bin Laden was responsible for the event, but he knew he did not fly the airplane. Suicide is not a concept Teddy has any familiarity with and suicide bombers even less so. Teddy expressed he was never going to go on an airplane again. He was scared it would happen again. “ I don’t want to go to Disneyland now, Mom.” I decided he needed absolute reassurance that it would not happen again. I told him he was safe and it would not happen to an airplane he was in. One of the easier aspects of raising Teddy - although it does have it drawbacks - is that you can tell Teddy that things simply are the way they are and his unabiding trust doesn’t question it.

One day, Teddy was watching the news in another room and I heard him call out as if in physical pain, “Oh no, my heart in pain. Stop.” I ran to him, not knowing what to expect and found him watching a news broadcast where the American flag was being burned and trampled upon. “Mom, they are killing my heart. They can’t do that.” I tried to explain that some people hate America and this is the way they show it. “ Then, I hate them too.”

Pictures of the “bad man” were and still are six months later everywhere. Teddy recognizes Bin Laden through his clothing. All Muslims (and Jews) who dress traditionally to Teddy are now bad men. Osama Bin Laden ”has a gun. He going to kill somebody. He needs to stop killing. People say God help me when he tries to kill them. I hate the bad guy. He has mean friends and they get killed. If we catch him and kill him it is a good deal.” I don’t really want Teddy thinking that the death of anyone is a “good deal.” I especially don’t want him thinking that a man he recognizes primarily by his traditional dress is evil. I think this is one situation where I have no control and just have to accept that my son has feelings over which I have no control. His age of innocence is over.

Spare the Rod, Spoil the Child

Teddy was not allowed the same freedoms his peers were when he was very young. I vividly recall when he and I went to MacDonald’s with a group of women and children, mostly toddlers, from a Single Mothers Support Group and I was criticized for being too strict with Teddy. I insisted that he sit and eat, be polite, and ask to be excused to go to the play area. The other children were running back and forth from the play area to get a bite of food or to direct the conversation to them. I tried to explain that I felt Teddy needed to be held to a higher standard of behavior to help him have all the opportunities I wanted for him in the future.

Teddy had proven his ability to behave under pressure repeatedly before. He attended the New York Metropolitan Opera five times, tucked into a baby carrier under my coat before he was discovered during the first performance in warm weather. An usher told me Teddy would not be allowed in. I reassured them that Teddy and I had attended every subscription performance of the year so far and he had never made a sound. If he did, I would be the first to want him taken outside. We were allowed to stay, and I was apologized to during the first intermission.

Teddy had also dined with me up and down Columbus Avenue without incident. I’m sure we made a rather comic sight. Mark, Jim, and I, often with several other men would arrive at a restaurant decorated with white starched tablecloths and candles carrying in a diaper bag, a portable high chair, and a very little boy. We were never turned away, but I am sure it was often discussed where to seat the bunch of men with the baby.

Throughout Teddy’s toddlerhood he was always the perfect companion whereever we went. I was mortified when he began to start biting other children when he was four. I was almost sure I would have to withdraw him from nursery school. We discussed biting at length, and I seemed to make no headway. In anger, one day after he had yet again bitten a classmate, I bit him. I can still remember the stunned look on his face. Against all odds, this did end Teddy’s biting rampage.

Perhaps one of the most frustrating behaviors Teddy had when he was young involved control. Teddy was potty trained at twenty-three months, and never had accidents. But, he learned that he could pee in his clothes and our plans to go out would change. If Teddy did not want to go to school, or speech therapy, he knew that I would get so angry when he peed in his snowsuit or clean clothes that I would often cancel our appointments and just stay home. He continued this truly obnoxious habit until our lives became less complicated after we moved to Michigan.

In Michigan, Teddy suddenly had more freedom of movement than he had ever had before. In New York, lived on a fourth floor apartment and he considered his home to be the whole building. A very heavy locked door separated him from the rest of the world. Teddy knew all the neighbors, and he was welcome in any of their apartments.

In Ann Arbor, we lived in a housing development. The door of our house led to neighbors’ houses and streets in all directions. Teddy constantly disappeared from the house. Often, he would announce he was going next door, but change his mind and go elsewhere. I spent what seemed like endless hours yelling for him. I wanted him to be free to visit neighbors, but I worried about his safety - I just wanted to know where he was. I could not make him understand how important this was. I considered all sorts of tracking devices created for hunters.

I eventually hit upon the idea of giving him a pager. Whenever he left the house, he had to have his pager, and it had to be turned on. (I eventually taped it on semi-permanently.) Instead of yelling and worrying about him and punishing him when he wasn’t where he said he would be, I paged him. He was supposed to come straight home or get someone to call me immediately when he was paged. Other parents thought I was crazy, but it worked. In Michigan, in England, and New York Teddy would wear a pager without fail. He understood the pager to be his source of freedom; not unlike the freedom a person who uses a wheelchair feels. No pager, no access to freedom of movement.

The next behavioral issue we would confront would happen in kindergarten. Teddy would periodically just leave the classroom. The teachers did not know why he was leaving, but he never left when I was helping out in the classroom. A bell was put on the door so at least it would be known immediately when he left. I watched the classroom unobserved to see whether I could determine when he walked out. I thought the pattern I saw was when Teddy was frustrated with an activity he wanted to do, but couldn’t, he would walk out. Against the advice of his teachers, I decided Teddy needed a really powerful angry word to say to express his frustration. I taught him to say damn. His teachers were not pleased. Damn became a very commonly heard word, until I taught Teddy to say it just as loud and just as angry, but inside his head. It took awhile for the walk outs to stop, and I began to wonder which looked worse on a record - being suspended for walking out of class or for saying damn.

One foolish thing Teddy insisted on doing involved his beloved red square dance slip. He would take it to school or wear it outside our house. He had a backpack he took to school, and some days he would also take a swimming bag. He often sneaked the slip into his bag and would try to wear it at school. His classmates were surprising tolerant of Teddy wearing the slip in kindergarten and first grade, but I eventually had to create strict rules about the wearing of the square-dance slip. If Teddy took the slip to school, he lost access to it at home for a week. If he wore it outside the house, he was grounded for the rest of the day. Slowly, over time, we eventually ended the struggle over wearing the slip to school, but I am not at all sure my punishment had anything to do with it.

From first grade on, I was more worried that Teddy was too passive than about poor behavior. Teddy’s very frustrating way to refuse to participate in an activity was to tune out, or sit and refuse to be moved.

I can still remember holding an infant Teddy in my arms and thinking determinedly that he would never be institutionalized, and never be in segregated special education. When I was a teenager, I had volunteered at a large residential institution for children with disabilities and the horrors I watched inflicted upon children words cannot describe. The staff provided only essential care, and that was given as quickly and remotely as possible. These children only existed to live each day exactly as they had the day before - without dreams for any kind life among people who loved them. I had dreams for Teddy, and I wanted him to have dreams for himself.

I soon came to think Teddy would benefit from special education early intervention services. He could receive excellent play, occupational, speech, and physical therapy at a school for very young children with disabilities.

I reconciled myself to early intervention partly because this was the only way we had access to services. But, what I believed more important to Teddy’s development than early intervention was friendships with children in the neighborhood. Happily, Teddy had easy access to friends, since I had run a family day care home where I provided part time childcare. Each day a group of children settled in for a morning or afternoon of play. The Teddy I saw at school and home was similar to the one at home, but the Teddy at home was far more playfully interactive with other children.

Teddy surprised everyone by becoming potty trained by twenty-three months. Potty training was not even on the agenda for the children at Teddy’s school, but it was very much on the minds of the families whose children came to our house to play. Once the first child became potty trained, it was like a game of dominoes, with Teddy the final domino to fall. It hadn’t even occurred to me that Teddy was ready to be potty trained, but he obviously took his cues from his friends, not the special education experts.

When Teddy and I moved to Michigan, he was almost four. I did not want to run a family day care home, and hoped that Teddy might be able to go to nursery school and I could go back to work teaching. I found a cooperative nursery school that would accept Teddy in their two-year-old class on Tuesdays and Thursdays. On Monday, Wednesday, and Friday morning he could attend a class for children labeled “pre primary impaired.” This did not give me time to work, but it did allow me to spend a lot of time helping his nursery school learn that Teddy was more like the other kids than he was different. Teddy’s acceptance by his friends at school was immediate. It was amazingly easy.

Sue and her son Philip became our closest friends and allies as we took the next step in school. This friendship extended well beyond school. Teddy fondly remembers playing in the basement with “ Phili-up” and his sister Elizabeth playing card games like Go Fish and shooting baskets and I depended upon Sue for childcare.

After two years of success in preschool among kids without disabilities, I wanted Teddy to go to kindergarten. But, I did not want him to go to special kindergarten; I wanted him to go to kindergarten at the local school where Philip would go.

All summer I made preparations for Teddy to attend the local school. I could be extraordinarily assertive about what I wanted for Teddy, because whenever I would falter I had the backup of foreword thinking advocacy organization that is now called Washtenaw Association for Community Advocacy (WACA.) My commitment and understanding of inclusion magnified as each day passed. Everything seemed to be going well when I attended the Individualize Education Planning meeting that would steer the course for Teddy’s first year at school. But everything went wrong. The promises the school administration had made were empty: instead of a kindergarten class we were offered a spot in a mixed kindergarten through fourth grade class. Not only was I sure that adding a very young Teddy to such a wide age range was asking for disaster, but the teacher in this classroom was the one who seemed least pleased with the prospect of a special ed child in her regular classroom. I sobbed out of control during the meeting.

We reached a compromise; Teddy would attend the local special ed kindergarten in the morning and regular kindergarten with Philip in the afternoon. If Teddy were successful in regular kindergarten, he could continue in regular school starting in first grade.

From the start I accepted this plan under duress. Was it fair for Teddy to be evaluated on the basis of how well he did during the second half of a kindergarten day twice as long as his peers experienced? Why was success considered Teddy’s responsibility and not the responsibility of the school to ensure? Why was Teddy’s success measured against other children and not on the basis of goals that made sense for him?

Teddy began his first day of school with newspapers chronicling the event. A photograph of his friend Philip and Teddy together on a playground slide represented the first day of school in Ann Arbor that day. Little did anyone know then that what seemed such an unusual event in 1989 would become commonplace less than a decade later.

The girls in kindergarten seemed to take to Teddy the easiest. This would prove to be true every year: the girls seemed generally more willing to appreciate Teddy for his differences. Each year Teddy would establish a special friendship with a few children in class. Often it would be the girls or boys who were having the most difficulty with the academic material that took on the role of mentors: helping Teddy appeared to help them. One year Catriona’s mother made a point of telling me how much happier and more successful her child was in school now that she was helping Teddy. Cat evidently discussed every success of Teddy’s as if it were her own.

Each year Teddy also had a teachers’ aide. This person was an extra hand to help out in the classroom however needed, but was also primarily responsible for Teddy during the times he needed special assistance that his peer, or his teacher could not provide. Although Teddy’s teachers changed each year, Eric was his aide from the middle of kindergarten through fifth grade.

Having Teddy included in regular classes as he grew older worried me. I wanted to believe inclusion - as it came to be called - would work indefinitely, but I had my doubts. WACA never let my doubts become too overwhelming and was always there to point out how my fears and insecurities were groundless. I had a particular difficulty with a forth-grade world history unit and could not imagine how Teddy would participate. Teddy did not understand he lived in a country called the United States, what would he understand of world history?

Teddy surprised me by what he learned. He pointed out blue lake masses and river lines on a globe we had. He knew where the United States and Michigan was. He knew it was oceans that separated the different colored countries. He knew which way was right side up on a map and that the colored lines were roads. I am sure the other children in the class learned many more facts than this, but this was what Teddy took from these lessons as being important to him. And these were lessons he would have not been exposed for many more years, if ever, had we gone the traditional special education route.

During the summer before seventh grade Teddy and I moved to England. Living in the United Kingdom was more foreign than I ever expected it to be. While I found the community at large accepting of Teddy, the only school open to him was one that still had engraved on it in the stone “School for Imbeciles.” The classroom Teddy became a part of for a short time was for children between the ages of 10 and fifteen with disabilities. It did not matter what the disability was, or what special services the child might require, all the children stayed together in a classroom. Teddy complained each day he had a headache, and was often bruised from being hit, but enjoyed a friendship he developed with a child who had significant physical disabilities and shared with Teddy his love for computer games.

Rural England had few services for people with disabilities, but we did not need them. The small community opened their hearts to Teddy without hesitation. Teddy had his first job in Norfolk. We lived next door to a fish shop, and they asked Teddy if he would like to cut the parsley up in a blender each morning. At seven, Teddy would rise without reminder, dress in a shirt and tie and go next door to work for an hour before the shop opened. Teddy loved the notoriety of having a job. He also loved that he could shop for me. He could take the market basket and with a picture list in hand, shop for a small number of items I needed for the night’s dinner and put the charges on account. Teddy celebrated an unusual birthday party in England. We posted an announcement of his party in the town square, and I was surprised by how many people of all ages came, some of whom I had never met before. Over time it was evident to me that England was a good place to live for us, but immigration was not so simple, and we returned to the United States.

We set foot in Grand Rapids, Michigan where we would live for a year while I completed a second undergraduate degree. I presented Teddy to the local school administration to register, and we were told in no uncertain terms that inclusion was not an option. I insisted a segregated special education class was also not an option, and Teddy would attend college classes with me. Teddy loved my classes and proved the value of inclusion in the most unexpected way. One of the classes I took was statistics. Teddy could not count past ten: surely there was nothing he could learn in a statistics class. Teddy copied the board each day and would pretend to do homework with me. After awhile I realized Teddy had made sense of graphs. He would create colorful graphs and then explain to me what they meant. Although his graphs often appeared nonsensical to me, he consistently told everyone they meant the same thing. He could appreciate the idea of an x or an n as being “ a big secret, mystery you can’t tell, maybe later.“ He described the lines that went up as “more good,” down as “not so good.” and flat lines meant “ doing nothing.” Who could have imagined this child would have any understanding of statistics from a college class?

From Grand Rapids we moved to Syracuse, New York, where inclusion was the norm.

I went to the special education administration office expecting a fight about inclusion, but received none. Teddy began school the next day. Inclusion in Syracuse was not as all-inclusive as inclusion in Ann Arbor, but no less effective.

Teddy began his day and periodically returned to a special ed homeroom. He took a variety of classes and in each was welcomed by his classmates. Teddy returned home each day to regale me with stories of his friends at school. “India has a boyfriend, but I don’t know him, so I be India’s boyfriend.” “Sarah and me went to art and did drawing and coloring.” “ Emily walked with me all around the building for exercise” He showed me work he accomplished with the help of a buddy in class that amazed me: an essay about Britney Spears, a list of values important to being a good parent, an itemized healthy meal using the food pyramid, a detailed diagram of the body with each part labeled.

Summer camp was not so easy. The first year I wanted Teddy to go to summer camp I was up-front about Teddy’s disability and none of the camps I thought would meet Teddy’s needs were interested in him as a camper. The next year I was less up-front and only let the medical reports tell the story after I had already paid the fees and he had been accepted. The fees were returned with an apology that they did not have the staff available to help Teddy. The third year I was devious. I paid the fees and claimed to have mislaid the medical forms. I promised to bring replacements to the first day of camp. In line awaiting check-in, I was taken aside with concerns that Teddy was the camper being signed in. I professed some innocence regarding their concerns. It was finally agreed that Teddy could stay two days, and if he managed camp OK he could stay, but if not, he had to go home, and I forfeited the two-week camp fees.

I left Teddy at camp waving and happy to see me go. A group of young men who initially seemed a bit standoffish encircled Teddy and led him back to the campfire circle. I paused immediately after he was out of sight waiting for what I thought would be the inevitable tears and running into my arms. It didn’t happen. I walked further and found a chair near my car. I pretended I was just enjoying the scenery, but I still was not ready to leave Teddy behind. I was the last parent to leave camp that day. I drove to the exit of the camp and pulled over in the car and cried. I cried not so much because I was leaving Teddy, but because I was happy he was content, and I was sad that I had made a deal to keep him there. I was so tired of always having to make compromises and deals to give Teddy access to the same things other people took for granted.

I called two days later at the appointed time and there was no answer. I kept calling until I finally received an answer two and half hours later. I was panic-stricken thinking something had gone awry, but my call had been forgotten, and Teddy was doing fine. He was doing so fine that they unhesitatingly agreed he should stay for the full two-week period.

Two weeks passed without a panic call, and I looked forward to seeing Teddy, but Teddy did not look forward to seeing me. He was crying: he did not want to go home. I considered letting him stay, but realized that I was planning to be out of town and would not be able to pick him up on Sunday noon as woudl have been necessary. Tuesday was the earliest I could retrieve him. From a probationary two-day stay, Teddy ended up going to camp for three weeks and two days. When Teddy was finally set to go home, he had so many tearful goodbyes to make. He refused to go home with me. Fellow campers pushed Teddy into the car, and stood where he couldn’t open the door. We drove off with Teddy refusing to look at me with tears running down his face while telling me he hated me. It was a very long two and a half hour drive home. Suddenly at home the dam burst, and a flood of excited talk about camp ensued. “ Andrew helped me make a rocket and it flyed.” “Somebody put the flag up and we watch it go and cross our heart and talk and sing about the flag.” “We ate bad chicken, but the macaroni and cheese was so good.” “Boys throw the food, and I was afraid and I didn’t do it.” “ I ate marshmallows we cooked in the fire.” “Rainy and cold and I was shaking in the tent and my friends helped me get warm.” “ I got kissed by a girl while we were swimming and it felt good.” “ Sometimes I got tired and took a nap, and the big guy (camp counselor) had to blow a whistle to tell me to wake up when it was time to eat.”

Teddy has a truly exceptional ability to fit in well whereever he goes, and yet we always struggle to accomplish the first steps of joining any new community, be it school, summer camp, neighborhood, social event, or entertainment venue. Too many times I have had to cajole our way through front doors other people walk through without hesitation, like a Disneyland ride Teddy was old enough to ride, but they worried he couldn’t handle the excitiement. There have been countless ocassions when we have felt a chill in the room or seen eyes averted as we enter somewhere we have every right to be. But, it never fails, wherever we go and whatever we do, that someone takes me aside to tell me how impressed he or she is with something they observed about Teddy. I only wish we could someday seamlessly fit in without it seeming so unusual that a person with a disability like Teddy fit.

Boys will be Boys

During the first six months of his infancy, Teddy did not explore his body as most infants do. He had a flat affect, and responded very little, if at all, to being rocked, cuddled, or spoken to. He did not turn his head to avoid a cloth over his face or reach for objects or grasp fingers. He did not resolve discomfort by sucking on his fingers, a bottle, or crying. One of the very first activities Teddy seemed to take enjoyment in was wiggling. His nickname to this day is wiggle-butt. When dressed and lying on his stomach he would wiggle his body back and forth with obvious enjoyment. I even created a song about it, “ A wiggle-butt, a wiggle-butt, a teeny-tiny wiggle-butt, all he wants to play is wiggle all the day, wiggle, wiggle, wiggle”

Counter to many babies, when Teddy’s diapers were removed, he rarely reached for his genitals: he prefered to wiggle. I found this somewhat peculiar and worrisome. I decided he needed some help to discover he had a penis he could reach. Even with support,Teddy showed no interest in this activity and continued to prefer to wiggle. Wiggling continued unabated until he began elementary school, and is still engaged in occasionally now.

Little attempt was made to discourage his wigglinng, even with its obvious masturbatory affect, until he was four years old and attending a community preschool. Teddy himself did not recognize this activity as masturbation or unusual in any way as a child. He now engages in wiggling only in private, and stops if accidentally observed.

Once Teddy became potty trained, he discovered masturbation and the desire to be naked at all times. “No diapers meant freedom to Teddy - from clothing and from the padding between his legs that caused poor balance. I debated whether to dress Teddy in clothing that would enhance his ability to dress himself independently, or quite the opposite. Masturbation became a favorite activity. I did not want to discourage his self-discovery, but could not make him understand that there were places where it was appropropriate and others where it was not. I found myself praising him for doing it at after the day care kids went home, and escorting him swiftly to his room when he initiated it earlier.” (Fitzmaurice, 1988, p. 5.)

Just like people with Down syndrome are often characterized, Teddy was and is an extremely affectionate person. This was not a concern of mine until he was about four-years-old. Teddy wanted to kiss and hug everyone he met. Teddy’s hugging began to seem more and more like groping and his kissing became excessive.

“Teddy was fascinated with breasts and penises. Some people did not take offense at his occassional gropings, but others were appalled. It was difficult for everyone concerned to reconcile that this was developmentally appropriate for Teddy, even if it was no longer for his peers” ( Fitzmaurice, 1988, p. 5.) I tried to discourage the affection and groping, “without discouraging the friendliness, but he did not know how to draw the line. There were few successful attempts at modifying his behavior.” ( p. 6.) I tried to teach Teddy to greet someone with a handshake, and to ask before he kissed them, but this simply evolved into a longer handshake-hug-kiss greeting.

Throughtout Teddy’s life, but especially as a young child, I was gravely concerned with his personal and sexual safety. “His affection, naivete, and willingness to go anywhere with anyone is a source of constant anxiety for me. He could not differentiate between good and bad strangers. Teddy learned that there were people who hurt with guns, fists, and loud voices, but I have been unable to teach him that people can also be bad when they offer you candy, hugs, or motorcycle rides. The world is very black and white to Teddy and he is unable to understand the subtleties inbetween” ( p. 7.)

Teddy at 18 now understands these subleties better, but I am still certain that Teddy could easily be convinced by anyone that his first instinct that a person might harm him are wrong. When I asked Teddy if he would go in a car with a stranger who drove by on our street to the mall, he said

“ No, I don’t know them yet. “ And what if I wasn’t home, and they said they would take you to me, “ I say yes, let’s go.” Would you let someone in the house you didn’t know, “Maybe, but I be careful.”

A pivotal point to Teddy’s understanding of himself as a sexual male was Corky Thatcher. Corky was the teenage boy in a ABC Television series Life Goes On who also has Down syndrome. Teddy wanted to be like Corky. Until Corky, Teddy had rarely seen anyone like himself in typical sexual and social situations. on TV or anywhere.

“Corky a nice guy. He happy and has Down syndrome like me. Corky go on a date, and has a girlfriend. He want to take driving lessons, he gets angry at his mom and dad when they say no - maybe later. His parents are happy. He has friends at school.”

The depiction of Corky was contraversial in the parents of kids with Down syndrome community. The actor who played sixteen-year-old Corky was in his later twenties and on a continuum of function was exceptionally high. Many parents felt that this portrayal put undue stress on their children who would never be able to read or write, unable to learn how to drive, and could not communicate very articulately. I disagreed with this position most strenuously.

We idolize Michael Jordan for basketball, Chris Evert for tennis, Michelle Kwan for ice skating: most children will never achieve their success, and yet parents are excited when their children choose these professionals as idols. Why not idolize Chris Burke as Corky Thatcher and aim high to be like Corky.

Teddy was very social in his school environment, but he was the only boy with Down syndrome in his classes. As much as I tried to normalize everything about Teddy’s life, while celebrating his Down syndrome, until this point Teddy still seemed to have some underlying sense of himself as sexually androgynous. I do not know how much this was a consequence of his upbringing, or how much might have had to do with traditional notions of people with cognitive disabilities being asexual or forced into asexual behavior.

In many discussions, both online and in person, with other parents of children with Down syndrome sexuality and sexual behavior are often discussed. I find it very disturbing that parents often believe that they are able to exert control over their children’s sexuality by isolating them from particular experiences. In a recent discussion with a parent of four children, the youngest of which was 21 and had Down syndrome, she told me without hesitation that her son would never be allowed to date, because he might then get some ideas about sex, and he might want to be a part of a sexual relationship and he might get a girl pregnant. As I tried to initiate further discussion with her, she made it clear her position was incontravertible and physically moved away from me.
It is not surprising to me that this happens given what literature reagrding Down syndrome says about sexuality. XXXXXXXXX

When a pre-pubescentTeddy began to express interest in sex, I thought it would be easiest for him to understand that adults have sex, children don’t. I looked for materials he could look at as a non reader about the changes his body was about to go through and initially found few that were remotely helpful. Sexuality education books he would find interesting and understandable were designed for three to five year olds (Baird, 1990; Blank, 1983; and Mayle, 1973.) Books that discussed puberty were mostly words he could not read or understand (Bourgeois & Wolfish, 1994; Madaras, 1998; and Mayle, 1975.) I discussed with him the male role as the gentle men he saw in various movies he saw, and he took this very much to heart. Portraying an exaggerated male  gender identity he would pull out my chair, hold up my coat to put it on, and much to my chagrin kiss my hand. In a young Teddy this was cute, but it was important that he learn a more contemporary role. He is still often complimented on his Sir Galahad-like manners, but hand-kissing has become a rare, if not nonexistent occurance.

Teddy’s first sign of real interest in a person as a sex object was in the belly button of Baby Spice of the Spice Girls. Slowly Teddy’s fascination with Baby Spice’s belly button expanded to the belly buttons of his peers. Interest in girls was clearly moving into a different dimension and we began to discuss his role in a sexual relationship. Teddy quickly put together two things I had taught him in an unexpected way: when do boys become men? and when can people have sex? It seemed simple when I taught him at some young age that he would be a man when he turned 18. It seemed equally simple that children do not have sex, only adults have sex. But, Teddy now looked forward to the day he turned eighteen as the day he became a man and the day he could have sex.

Due to Teddy’s ever-expanding interests, I renewed my search for a good book to help Teddy understand the changes his body and his emotions were going through. I found It’s Perfectly Normal: Changing Bodies, Sex, and Sexual Health by Robie Harris (1996.) It’s cartoon illustrations Teddy could glean some information from independently, especially after we had read the book together and discussed it. Finding sexual education materials for people who are unable to read or read well that are not designed for institutional use continues to be nearly impossible to find.

Teddy and I often people-watched at the mall. Teddy loves babies, and especially takes interest in babies with Down syndrome. As Teddy’s interest in girls increased, he began to show comparable interest in watching pretty girls. One day I pointed out a girl to Teddy that was similar in age to him and also had Down syndrome. I was mortified at his response to my assertion that she might be girlfriend material. He completely rejected the notion, “ No way Mom, she can’t be my girlfriend.” In expectation of hearing something I really did not want to hear, I asked, “Why?” His response was that he couldn’t date her, because she can’t drive. “I need to date girls who drive.”
Driving in American society is a teenage right of passage into freedom from parental control, especially, but limited to boys. Few people with Down syndrome are able to learn to drive competently due to common characteristics including slow reaction time. Of those people with Down syndrome who do drive, all seem to have learned in their twenties.

As Teddy neared 16, I chose to tell Teddy it was his Down syndrome that prevented him from learning to drive rather than detail the specific reasons. Obviously Teddy understood that if he was going to be dating a girl without his mom as a chauffeur, she needed to be able to drive.

In part, because of his response to the young girl, I reconsidered my thoughts on why I told Teddy he could not learn to drive. I started to tell Teddy he was not ready to learn how to drive rather than he would never drive. Now, he nagged me and nagged me about when he would be ready, and finally well after his 18th birthday I relented and began to give him lessons in a parking lot. I decided I thought it was important that Teddy know how to drive - versus be a driver. He needed to be able to handle a car should an emergency ever present it where Teddy’s ability to drive or not drive would be the only was out of a crisis situation. It also became increasingly obvious to me that to Teddy being able to say, I know how to drive, meant far more than being able to move a car from point a to point b.

He took to driving like a duck to water, although he has never been out of the parking lot marked for driver’s education or allowed to go over 7 miles an hour. Unlike me, who at his age was clueless as to what to do behind the wheel of a car, Teddy required no instruction what-so-ever: he put the key in the ignition, changed gears, pulled out, signaled, turned, stopped, and parked on request. He accepts for the moment that he will probably never drive on the street, but it seems as if being able to truthfully say you can drive is an extremely affective self-esteem boost. Now I just need to figure out what to do with his desire to have a red Ferrari.

One incident stands out in my mind as being characteristic of society’s denial that people with Down syndrome are anything but asexual. I watched a video with Teddy we rented called Artemisia, (Merlet, 1998), which portrayed a female Renaissance artist as the first woman to paint nudes, It had many scenes with female and male nudity that I thought were appropriate and would allow Teddy the opportunity to examine the female body in a way I felt displayed the female form tastefully. It had one scene I thought was inappropriate and during it we removed ourselves to the kitchen to make popcorn. He told a respite care worker about watching the movie, and she reported me to Social Services. The two social workers who came to the house, suggested that I was subjecting my son to too much sexual stimulation. I eventually convinced them that this was considerably less stimulation than his peers without disabilities had access to.

Teddy, unlike his peers, cannot independently purchase sexually oriented magazines, surf the internet for porn sites, or even discuss sexual feelings and ideas fluently like boys his age often do and yet he still needed age appropriate sexual information. Artemesia provided him some of the visual information that my words could not provide and yet was viewed in the context of art.

David Hingsburger (1995 and 1996), a Canadian sex counselor has developed two videos Hand Made Love and Under Cover Dick designed primarily for men with cognitive disabilities . These two videos were only the second sex education materials I found to be really helpful to Teddy. Unlike Hingsburger’s recommendation in the accompanying manual, Teddy and I watched the videos first together. I wanted him to understand that what he saw in them was nothing he needed to feel embarrassment about and to feel comfortable talking to me about what he saw.
One is a video that teachs men how to masturbate. Teddy wanted to know whether I also masturbated and was clearly surprised. It was obvious he thought either that Moms did not masturbate, or women didn’t. He then did something very similar to when he found out I had a vagina - he started to ask name by name did this person masturbate? Clearly Teddy does not benefit by the same character of peer experiences as his peers do. Until he took sex education class last year I am not aware he has ever had the opportunity to talk openly with his friends about sexuality as it impacts on his life.

When I asked Teddy’s pediatrician about Teddy’s potential fertility, (men with Down syndrome have traditionally been thought of an infertile), he told me that the only way to know if Teddy was fertile was to test him. In order to test him he would have to ejaculate. Given I had no idea how I could make this happen with Teddy, he needed to know how to use a condom. The second video was about how to put a condom on. The pediatrician had already volunteered to help Teddy learn how to put a condom on and to discuss sex with him, and so I asked him he check out what Teddy had learned by watching the video and he gave him a supply of multi-colored condoms to take home. Teddy’s pediatrician played an important role in his developing sexuality and I will never regret my foresight in deciding as a teenager he needed a male doctor.

Teddy took enormous pride in his cache of condoms. It was with a combination of pride and embarrassment I overheard him showing a male friend his collection. It would be over a year before he used any of them, and then it was only to use when he was alone. He was, and is still is under the misapprehension that you always use a condom during sex - no matter what, no excuses - and masturbation is after all a sexual activity. I was tempted to let him know they weren’t needed when he was alone, but I decided why not leave things be, after all there was no harm being done.

I looked forward to Teddy’s birthday with a combination of dread and excitement. Teddy increasingly found himself interested in his peers as sexual partners. This interest he was keen to share with them, but also was clear that he could not have sex with them until he was 18. Teddy’s immature perception of what sex was included believing kissing to be sex. He would tell his friends he wanted to kiss them, but would have to wait until his birthday. I tried to explain to Teddy that kissing was not sex (and that he was free to kiss who he pleased within reason and mutual consent) and that sex would not magically happen on his birthday. But, try as I might he was very focused on this magical day.

I considered multiple solutions to the potential disaster of his birthday. Thankfully as luck would have it, we had the opportunity to spend his birthday week at Disneyland. This eliminated any interest in sex. The focus of his life was seeing Mickey Mouse. He was still excited to see young girls dressed in skimpy summer attire, but sex was far from his mind. This is the greatest difficulty in understanding Teddy’s sense of himself as a person, one moment Teddy interacts with his world as a typical eighteen-year old and the next more typical of a three, eight, or twelve-year old. How do I prepare Teddy to be an adult who consents to sexual activity when he is only partly able to fully comprehend the full ramifications of his activity?

Making a decision to adopt seemed pretty simple once I made the decision, but carrying it out was more difficult. After I found an adoption agency willing to work with me, the next step was to have a home-study completed. This would prove to be one of the more frustrating events of my life until then. The social worker who interviewed me seemed hell-bent on challenging everything I said. She questioned my motives to adopt, my core beliefs and values, my financial situation, my support system, and my adequate understanding of how my life would change as a single parent. From the beginning I decided to answer everything honestly, even when those answers sometimes seemed as if they would eliminate my chance to be accepted as a potential adoptive mother. I was clear about my relationship to Jim and Mark, and, how I experimented briefly with bisexuality and discovered absolutely no real in women. I explained that although I lived a very active social life, I was ready and wanted to be a stay-at-home mom. I would be questioned on these points over and over until I even wondered myself about their veracity. I vacillated between feeling myself to be incompetent and being surer than ever that I wanted to be a mom.

In all it took six months and a half a dozen interviews for the adoption agency to approve me, but it was not to be an adoptive parent as I had hoped, but as a foster parent. To say this was a disappointment to me is an understatement, but I did choose to foster parent.

My acceptance of Teddy as my first foster child came more quickly than I ever imagined it could. It took me completely by surprise, and it amazed me at what little information and agency contact I would have before he was placed with me. As an infant, Teddy was a boarder baby in a welfare hospital, and a pawn in a welfare lottery. Children who needed homes were put on a list, and the agency who first could find a place for these children to live in the community would be financially rewarded. The adoption agency forwarded my name to the hospital as I had agreed to take any infant as a foster child. When the hospital called my only real hesitation being that he was not a she, but thinking of this as a temporarily placement, I agreed.

Foster care is more stressful than anyone can possibly imagine when what you really want to be is a permanent mother. Add to that stress a baby who requires constant care and appears to have absolutely no interest in you as his mother and you have a potential disaster. I struggled each day with wanting to create a strong relationship and keeping my distance in anticipation of the day I would give him back to his mother permanently. Partly due to this stress, and our precarious beginning, Teddy and I are bonded together more closely than I thought mothers and sons could be.

When Teddy was young and we lived in New York; single mothers without a father somewhere in the picture were rare. Finding a place where we felt comfortable was difficult. Most of the families of Teddy’s friends through school had both fathers and mothers involved. The families who lived near us were the same. All of the support groups we belonged to seemed to have involved mothers and fathers. The place we felt the least like outsiders was at a Single Mothers by Choice support group. Although most of the mothers in the group adopted children from other countries or had used in vitro fertilization, and none had children with disabilities, they were alike me in that the responsibility for caring for their children lied in them alone, and like Teddy in that there was no one to call Dad. Being a part of a group of single mothers who were not constantly chastising their husbands for their lack of involvement in their children's lives was refreshing. I think it was also imperative that Teddy not be only exposed to single women who held animosity toward the men their children loved. I wanted Teddy to think of men as role models and people to love and admire.

When we moved to Michigan, we moved to a different world. Life in Ann Arbor was unlike our life in Manhattan in every way. From living on a street full of activity with opportunity for cultural experiences only a short distance away, we lived in an area of houses, houses, and more houses. In Manhattan, we spent much of our time on the stoop talking with friends, or meeting friends at events where we unexpectedly encountered even more friends. In Ann Arbor, Teddy and I had no friends when we arrived and found it difficult to break in. We established a few close friendships where we spent more time at each others homes than out and about. In New York most of our friends were single, while in Michigan they were married.

As Teddy got older, more and more of our friends became single parents families, but there remained a distinct difference between them and us. My previously married friends wanted to socialize without their kids when they were with their former spouses, while I still wanted to socialize including Teddy. The most popular topic of conversation was also the shortcomings of their Ex. This put strains on relationships that became tenuous at best. The one friendship that stayed strong was with a mom whose husband traveled. She and I socialized with her kids and mine while her husband was away. She also received a tidy income baby-sitting while I socialized without Teddy.

There was another difference between me and all of my friends with children who had once had two parents: I had a social life. Teddy was accustomed to socializing with me with both men and women, and encouraged me to date. He loved to stay at our friend’s Sue’s house while I dated single men. He enjoyed helping me choose what to dress up in, brush my hair, and bring me my make-up. I dated without negative reactions from my son, but my divorced female friends rarely dated out of concern for their children’s feelings.

The Internet expanded my dating opportunities tremendously. I could initiate a friendship with a person online, and essentially date online after Teddy went to bed. When an online relationship seemed to have more potential, I could meet face-to-face. One relationship became so promising a man in England to came to visit. This relationship promised so much that Teddy and I to move to England to continue it full-time.

Teddy and I lived in a household with another adult for the first time when we moved to England. This was the first time in his life Teddy ever had to share me, but it was not this that caused our greatest familial conflict, but differences in child rearing strategies. The very first argument I recall with my new partner John was regarding dinner. Teddy and I had eaten dinner together every night of his life and to do anything different never occurred to me, whereas John was accustomed to quite the opposite. Children were quiet and attentive during the few dinners they were invited to eat with adults. After considerable discussion we finally reached a solution that neither of us was completely happy with. Two nights a week Teddy would eat earlier alone, three nights he would eat with us, Wednesday night Teddy would eat alone with me and John would go out with friends, and the final night would depend upon circumstances. (These circumstances included that every other week John had a visitation with his two sons for two days and nights.)

These nights when Teddy was to eat alone, he did not eat alone, he ate with me sitting there with him, but it never ceased to feel quite foreign to me. These evenings did give him the opportunity to eat food combinations that only he enjoyed, and invariably he helped me cook to eventually learn to cook himself alone. I think Teddy adapted to these circumstances better than I did. Wednesday nights did become quite enjoyable as these were the nights we ate American dishes that John could not quite stomach like macaroni and cheese, corn on the cob, Jello salad, and anything with peanut butter.

Another major bone of contention became school. The first few months we lived in England school were the least of my worries. We had not yet settled to live anywhere permanent, and Teddy and I had a whole new country to explore and a new culture to learn. Both John and I were impressed at how accepting everyone one was of Teddy. John had never been around a child like Teddy, and he was really unsure how we would be received. Teddy created almost instant friendships with the children in the neighborhood where we lived. The doorbell rang constantly with kids coming in and out. Some of these kids took advantage of Teddy I have no doubt, but generally he was involved in genuine friendships. We also were never stared at in public or treated poorly: I had no expectation of people behaving badly toward us, but John did.

When we finally moved house to the country, John worried that acceptance here would not be as easily gotten as it had in the city. Again, he was wrong; the acceptance here was greater than I ever expected. I felt welcomed in a way I never could have imagined. Teddy quickly learned to navigate the small town and would spend hours each day hanging out in one store and then another talking to storekeepers and customers. He would wear out his welcome and be asked to leave, but he was never asked to never return.

Teddy would have his first job in England. It had not occurred to me that he was ready for a job, but it had occurred to the fish shop next door that he could be of some help. Each morning Teddy woke up early before the shop opened for customers, and he chopped parsley and other herbs for the fish cakes made each morning. Eventually, he also learned to handle the fish. Teddy advertised the goodness of the fish cakes far and wide and people were known to come in and ask for them by the name of “Teddy’s Fish Cakes.”

After we settled into our new house I went to the local school to enroll Teddy, and was sorely disappointed at the response I received. They were a small school and felt unable to meet Teddy’s needs and refused to enroll him. I was told he would have to be evaluated, and then he would be placed appropriately. I was asked to visit the local special school; it had smoothed over engraving in the stone above the door from years past, “School for Imbeciles.” The writing on the wall was clear to me and I would have none of it.

For many months I argued with the school administration, and it was finally resolved that if I could find a school to take Teddy, they would provide the supports he needed. I met with every school head master in the county and none would budge. I could convince no one to take Teddy on as a pupil.
This caused a massive strain in the relationship between John and me. First, John could not understand my adamant stance against the special school, and second, he believed Teddy belonged in school no matter what the school. We argued, and I cried until the choice became clear: Teddy would go to special school or we leave England. Teddy went to school.
Teddy loved school. He considered himself a teacher and caregiver. He pushed children using wheelchairs, comforted kids crying on floor mats, carried things from here to there, and thought of himself as a role model. I hated it. This was not what I wanted from school for Teddy. Over time, John came to agree with me. But, just as it is too often the case, once you accept the worst case scenario, there is no way out of it. Had I realized that the relationship I had with John would be short-lived, perhaps I would have accepted special school more graciously.

Although this relationship with John, and in time his two sons lasted only three years, it has represented more than just three years to Teddy. John came into Teddy’s life when he was entering puberty and much of how he has shaped himself as an adult I see as a reflection of John. The relationship I was in with John never ceased to be a romantic and sexually charged one: Teddy grew to appreciate his mom very differently through John’s eyes. John used a knife and fork in a typical continental style: Teddy does too even five years after leaving England. But perhaps most importantly, John has served to be that elusive father that all kids have, but as the adopted child of a single parent Teddy has never had.
Teddy tells anyone who asks him about his family that his mother is Susan, and his father is John and that he has two brothers that they live in England. Teddy to the best of my knowledge has never negated that he has a disability or any other fact of his life, but he seems to take great satisfaction in being able to have someone to call his father - even someone with whom he will likely never again have any contact with. This need definitely has to do with his public persona as he will often tell me sadly that “John not my father anymore. My brothers are not my brothers. It makes me sad.”

 

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