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 wiggling, 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 controversial 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-pubescent Teddy 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 occurrence.
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?