PLUS: Tips on Dating, Sex, and the "M" word!
From the moment of their birth, we simply hope our kids are happy and know love. Yet we sense that our children’s warmth and needs can be accompanied by a degree of naivete that makes them vulnerable to bad elements that unfortunately exist in every community. How can we help our self-advocates know the difference?
First, let’s step back and celebrate their personality and reclassify their “naivete.” Most in the Down syndrome community are indeed less aware of their surroundings, and while that creates some vulnerabilities, it is a learning opportunity for all of us. They don’t worry about social standards – whether regarding dress, appearance, or behavior.
Especially as a kid, our daughter, Gwendolyn, always had her unique way of mixing and matching stripes and patterns. She loved her music and often danced and sang with headphones on while walking in the mall or waiting in the airport. I think this is a beautiful thing. I’ve always felt there is so much I can learn from Gwendolyn, and her disinterest in societal norms is tops on the list. True, she isn’t really aware of those norms, but that is the point. Perhaps the rest of us just spend too much time trying to be well-versed in these norms and making sure we don’t stray too far from them lest we attract unwanted attention. Most self-advocates don’t give that a second thought. What a wonderful gift they offer us in these moments.
This simple model can aid in discussions with your self-advocate about who fits in each category and what is appropriate and inappropriate regarding sharing, talking, and touching for each group.
THE SOCIAL CIRCLES MODEL
Immediate Family: By definition, these are trusted, close family members – typically parents and siblings, perhaps extending to grandparents, aunts, or uncles. These are the people who know, love, and accept your self-advocate for who they are. There is a high degree of trust and sharing of thoughts and confidential information within this group. Hugs and kisses can be appropriate. This category represents the core of the Independence Team and could be involved in their daily monitoring and support, but definitely should be part of the longer-term Independence Plan development and execution. This group may be one person, or a half dozen. Each member should know they are part of this group and enthusiastically want to participate in all that this group entails. Keywords: close, trusting, hugs with consent
Friends & Family: This group includes extended but well-known family along with close friends. They provide sounding boards, social skills development opportunities, and friendship. They may be close, but you want to know if your self-advocate is spending time with these people. Schedule the play dates and be aware of what they are doing. They certainly should care for the best interest of your child, but they are likely not as well-versed on all the nuances of Down syndrome. Family should be trained on how to support independence while also monitoring outside risks in public. Friends may include others with Down syndrome or other disabilities, as well as mainstream neurotypicals. This is their social circle of friends and is quite important. However, they are slightly removed from the most intimate levels of trust and touch. Hugs and hand-holding may be appropriate but further contact is not. Keywords: friends, sharing, playdate, hand-holding with consent
Professionals: This category includes teachers, doctors, and therapists. It is important that the parent or caregiver has established a relationship with these people. You should share expectations of service and your Person-Centered Planning approach so they may include the same in their interaction. This category should be role-appropriate. Your doctor should be trusted with information regarding your loved one’s health and wellbeing and be able to examine your self-advocate in an appropriate way. Certainly, I always want to be present at doctor’s visits. Obviously, teachers would not have that same access, but you want your self-advocate to feel comfortable talking with them about their interests and frustrations, in order to pursue an appropriate development plan. It’s important to explain these differences to your self-advocate so they know how best to engage with each professional. Some members of this group may also be part of the Independence Team, albeit perhaps as consultants. Handshakes can be appropriate for this category. Keywords: teacher, doctor, sharing information, handshakes with consent
Acquaintances: This category includes schoolmates, co-workers, and even relatives that your self-advocate has met, but does not know well. However, these are not close friends and are not considered to be in the circle of trust. It is fine to talk to these people and waves or handshakes are appropriate. These are likely not people your self-advocate would be left alone with unless within a structured group setting like school or work. People may move from this category to the Friends & Family circle and even vice-versa. This can be a confusing category because they are neither strangers nor close friends so describing the group concept and role modeling it yourself (pointing out who are in this circle for you) is helpful. Keywords: hello, cautious, buddy system, waves
Strangers: This group seems obvious. These are people who your self-advocate doesn’t know. They could be friends or acquaintances of yours but new to them, in which case you can introduce them, but they still may remain strangers to your self-advocate. Amanda’s mom, Joyce, shares, “Amanda is a magnet for strangers because they just want to come up to her and hug her and tell me how beautiful she is.” While we aspire for our loved one’s inclusion in society, generally, I would advise our kids to avoid strangers unless there is someone else with them to make introductions, in which case a handshake and general conversation may be appropriate. Otherwise, I’d rather guide our self-advocates not to talk to strangers, not to shake hands with strangers, and of course, never to walk with or get in a car with strangers. This may be a scary discussion for you and your loved one, but it is necessary to ensure they do understand the risks that are out there. It is part of a full and balanced discussion of The Social Circles Model, so they are neither too scared to talk to anyone nor too comfortable to hug everyone. Keywords: stay away, avoid, caution
Friendships
Friendships can be tricky for our self-advocates, but they are essential in building a sense of camaraderie and elevating self-esteem and mental health. Friendships help our loved ones share feelings and fears, have a trusted sounding board for ideas, and gain a sense of community. By relating to others, people don’t feel alone or wonder what is commonplace or acceptable and what might be strange. Often, our self-advocate’s friendships tend to appear superficial, filled with general chitchat and funny antics without much depth or body, yet they do provide warmth to our loved ones. It can be hard for them to establish deeper conversations on their own. Offer to host a playdate or take them out for lunch to help get the conversation going. Ask questions about their background and interests so they will recognize what they have in common. Promote follow-up conversations and ask your loved one how their friends are doing and what they are learning about their closest companions.
Katie Thune of Mad Hatter Wellness suggests good friendships involve sharing, taking turns, respecting boundaries, and compromising. However, as with any group of friends, drama can ensue. Ms. Smith of the Friends of Down Syndrome has seen feelings hurt by unintended nudges or smirks, or people not sitting next to others at lunch. She reminds her students that everyone has a bad day sometimes and not everyone will be friends with others. She tells them, “Don’t let anybody else control your day. They don’t decide what kind of day you’re gonna have. It’s gonna be a good day if you say it is. I say ‘kick rocks’ – don’t worry about it and move on. You cannot be friends with everybody all the time. Go find somebody else to be your friend today.”
Drama can go with the territory, but the value of friendships is paramount. Depression and feelings of loneliness are prevalent amongst adults with disabilities. We all need someone to share our innermost thoughts with, so they don’t just stew in our heads[AHJ2] . Help your self-advocate cultivate those relationships.
Dating & Sex
We should not be surprised that our teen self-advocates develop feelings and even urges. This is as normal for them as it is for us. They may not understand them any better than we did when we were their age.
You can help by talking about the difference between friend and boyfriend/girlfriend. As Ms. Smith of the Friends of Down Syndrome notes, “They all want to be loved and liked. Some of them don’t know the difference between the two.” I presume that most boyfriend/girlfriend relationships start as friends, and perhaps best friends, before advancing to a warmer relationship. In such bonds, they want to share secrets with each other and spend more time talking and playing together. Then you may expect the topic of “mutual attraction” to be introduced. Dating relationships are based on both people having similar interests and attractions— otherwise it’s just a crush from afar. Encourage them to talk about their feelings with you and with each other. Support and shuttle them for dinners, movies, and playdates so they can explore their relationship. Keep an eye out for hand-holding and consider providing them some private time for kissing, if/when the relationship has advanced.
Many parents are understandably nervous about this big step. I encourage you to coordinate these steps with the other person’s parents. Try having the parents and self-advocates out for dinner to talk and to observe the self-advocates at a separate table. This might help soften reluctant parents and promote a happy relationship for everyone. If they are not supportive of their loved one dating or kissing, you will need to have a conversation with your self-advocate to reframe the relationship and should encourage the other parents to do the same. Misalignment often doesn’t end well, leaving the self-advocates frustrated and confused. Discouraging or forbidding such relationships is not healthy. It’s denying your loved one their most basic instinct and desire for close friendships. It’s better to support these relationships with a dose of caution and a watchful eye.
I would also encourage you to consider a “birds-and-bees” conversation with your self-advocate. It doesn’t matter whether they are a boy or girl. It’s the same as with our other kids. It can be an awkward and uncomfortable conversation for everyone, but I’d rather them hear it from me than perhaps a distorted (or perverted) version of the truth from other “friends,” TV, the internet, or a stranger. This doesn’t have to be graphic, but having a candid, adult conversation with proper words for body parts is usually appropriate. This is a good time to reiterate the concept of consent. Both people should know that mutual respect is essential and that “no” means no…to anything. They should also understand that kissing is for girlfriends/boyfriends and touching privates is for people that are either in an advanced relationship or married, depending on your personal view. This may not be your true moral position, or mine, but given the concept and free-flowing expressions of “love,” if you just say touching is for those in love, you may introduce confusion or advanced issues much earlier than you’d like.
You may also run into the conversation of babies with your son or daughter. This is a natural ambition for adolescents, but given it is very unlikely people with Down syndrome can conceive and even more unlikely they will be in a position to care for a baby, we opted to nix this conversation early on. It can be confusing and heartbreaking, but it is better than them continuing to develop that vision in their head when it is one of the things that is just not feasible.
The "M" Word
Finally, I will gingerly approach the topic of masturbation or “self-pleasure.” Your views and openness to discussions with any of your kids is a personal choice. Specifically for your self-advocate, including this in your discussions can help them understand what otherwise may feel awkward or shameful. If you had a conversation with any of your kids, then be prepared to have a similar conversation with your self-advocate. Otherwise, at least make space for them to do their own exploring. Institute privacy rules in the house, ask them if they have any questions as their body changes, and be supportive. This is a confusing time for any teens and young adults. Let’s try not to make it more confusing by leaving our self-advocates to figure out these feelings on their own.
This article is adapted from our award-winning book, The Essential Guide for Families with Down Syndrome, which has several chapters covering all these topics in detail. Regardless of which option you choose, it's important to use available resources to find the best option for your loved one.
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